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Thelivedexperiencesofadolescentswithautismspectrumdisorder-apersonalconstructivistandfamilysystemsapproach.pdf
University of Wollongong Research Online
University of Wollongong Thesis Collection 1954-2016
University of Wollongong Thesis Collections
2014
The lived experiences of adolescents with autism spectrum disorder: a personal constructivist and family systems approach Elizabeth Kate Cridland University of Wollongong
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Recommended Citation Cridland, Elizabeth Kate, The lived experiences of adolescents with autism spectrum disorder: a personal constructivist and family systems approach, Doctor of Philosophy thesis, School of Psychology, University of Wollongong, 2014. http://ro.uow.edu.au/theses/ 4303
Faculty of Social Sciences
The Lived Experiences of
Adolescents with Autism Spectrum Disorder:
A Personal Constructivist and Family Systems Approach
Elizabeth Kate Cridland
Bachelor of Psychology (Hons)
This thesis is presented in partial fulfilment of the requirements for the award
of Doctor of Philosophy (Clinical Psychology) in the School of Psychology,
University of Wollongong
August 2014
i
CERTIFICATION
I, Elizabeth Cridland, declare that this thesis, submitted in partial fulfilment of the
requirements for the award of Doctor of Philosophy (Clinical Psychology), in the
School of Psychology, University of Wollongong, is wholly my own work unless
otherwise referenced or acknowledged. The document has not been submitted for
qualifications at any other academic institution.
Elizabeth Cridland
August 2014
ii
ABSTRACT
Individuals with Autism Spectrum Disorder (ASD) experience persistent and
significant social communicative impairments, as well as restricted and
repetitive behaviours and/or interests. There is currently a dearth of literature
investigating the experiences of adolescents with ASD, despite research
findings indicating adolescence is a particularly challenging period for these
individuals. In addition to the significant influence of ASD on the individual,
having a family member with the condition can have chronic and pervasive
effects on individual family members and the family unit as a whole.
However, research investigating the experiences of families who have an
adolescent member with ASD is scarce.
The overall aim of this thesis is to investigate the lived experiences of
adolescents with ASD and their families. More specifically, the studies
explore the positive and challenging aspects of adolescence; the coping
strategies used by family members; and the distribution of roles and
responsibilities within the family and their impact on individual and family
functioning. A qualitative approach was used to interview multiple family
members, including adolescents with ASD, mothers, fathers, and adolescent
siblings.
The thesis is informed by Family Systems and Personal Constructivist
frameworks. Chapters 2 and 3 examine these frameworks in relation to
understanding adolescents with ASD and their families. Conceptual and
methodological components of these frameworks were used to guide
subsequent qualitative investigations, which are presented in Chapters 4-7.
iii
More specifically, Chapters 4 and 5 focus on the experiences of adolescent
boys and girls with ASD, respectively; Chapter 6 investigates the
experiences of parents; and Chapter 7 identifies issues pertinent to
adolescent neurotypically developing siblings. The findings of these
qualitative investigations highlight a range of adolescent-specific issues,
covering physical, cognitive, emotional, social, and sexual domains, which
may provide guidance to clinicians, researchers, and family members
supporting adolescents with ASD and their families.
Chapter 8 utilises Personal Constructivist methodology to investigate the
dependency patterns of adolescents with ASD. Findings indicate that the
adolescents had various ways of dispersing their dependencies amongst
resources and differed in the types of support most utilised. Additionally, by
including family members, the study was able to investigate family
awareness of the adolescents’ preferences. The findings presented in this
chapter offer a novel approach to understanding the experiences of families
living with ASD, given the adoption of the combined Family Systems and
Personal Constructivist framework.
The thesis concludes with a synthesis of the key findings of the conceptual
and qualitative investigations. It considers research limitations of the studies
conducted and discusses implications for future research and clinical
practice. Overall, the thesis findings address an important gap in literature
and have the potential to make significant contributions to the field of
clinical psychology by directly informing clinical interventions for
adolescents with ASD and their families.
iv
KEY ABBREVIATIONS
Asperger’s Syndrome ….………………………………..…….………. AS
Autism Spectrum Disorder …………………………………..……… ASD
Family System ..………….………………………….…….…..……….. FS
High Functioning Autism ..……………………………...….……….. HFA
Interpretative Phenomenological Analysis ……………………………. IPA
Neurotypically developing ..…………….…………………………… NTD
Personal Construct Theory ..…………..…………….……..………… PCT
v
“Sometimes when you are in a crowded room the best way to be heard is to yell.
But the best way to be understood is to explain yourself.”
Carly Fleischmann 1
1 Fleishmann, A., & Fleishmann, C. (2012). Carly’s Voice: Breaking Through Autism. New York, Touchstone.
vi
ACKNOWLEDGEMENTS
The importance of understanding adolescents with ASD within their family system is
reverberated throughout this thesis. So too is it necessary to recognise the system within
which this thesis was grounded ~
This thesis would not have been possible without the willingness and openness of the
families who participated. Thank-you for trusting me to share your very personal stories-
your experiences have moved me both professionally and personally.
I will be forever grateful to my research supervisors - Peter, Sandra, and Chris. Thank-you
for believing in the value of this research and providing me with the support necessary to
undertake this project. I feel humbled to have worked closely with each of you; your
individual and combined knowledge and experience helped me at every stage.
Thank-you to the various individuals and organisations who assisted throughout the
development and implementation of the research. In particular, thank-you to Bruce Rowles
and Raeleigh Kerr (ASPECT South Coast School); Mark Lucas (Dapto High School), and
Ann Preston and Greg Carey (Edmund Rice College) for assisting in participant
recruitment; the Jones family for feedback during pilot testing; Tania Sterchow for
involvement in member checking; Beverly Walker and Gerard Stoyles for providing
conceptual input; and the School of Psychology administration staff for general assistance
and support.
Thank-you also to my peers; you were the perfect combination of sounding-boards,
mentors, and friends. Thank-you especially to Nat, Kye, Rach, Alisha, Laura, and Andrea.
Finally, thank-you to my family for your support in everything I do. Mitch, in particular,
thank-you for believing in me and standing by me while I signed-up for another four years
of uni! You are my rock.
vii
TABLE OF CONTENTS
Certification ............................................................................................................................ i
Abstract .................................................................................................................................. ii
Key abbreviations ................................................................................................................. iv
Acknowledgements .............................................................................................................. vi
Table of contents ................................................................................................................. vii
List of tables ......................................................................................................................... xi
List of figures ...................................................................................................................... xii
Thesis publications ............................................................................................................. xiii
Thesis manuscripts under review ....................................................................................... xiv
Statement of verification ..................................................................................................... xv
Chapter 1: Introduction
1.1 Preamble ............................................................................................................. 1
1.2 Autism Spectrum Disorder ................................................................................. 1
1.3 Conceptual framework ........................................................................................ 5
1.4 Thesis aims .......................................................................................................... 9
1.5 Thesis structure ................................................................................................. 10
1.6 Significance and originality .............................................................................. 11
1.7 References......................................................................................................... 13
Chapter 2: Family-focused autism spectrum disorder research: A review of the utility of
family systems approaches
2.1 Abstract ............................................................................................................ 24
2.2 Introduction...................................................................................................... 25
2.3 Family-focused ASD research to date and its limitations ................................ 26
2.4 Common theoretical framework ...................................................................... 29
2.5 Implications for clinical support services ........................................................ 35
2.6 Implications for future research ....................................................................... 37
2.7 Conclusion ....................................................................................................... 43
2.8 References ........................................................................................................ 45
viii
Chapter 3: Understanding high functioning autism during adolescence: A personal
construct theory approach
3.1 Abstract ............................................................................................................. 55
3.2 Introduction ....................................................................................................... 56
3.3 Overview of PCT .............................................................................................. 57
3.4 Adolescence, HFA, and PCT ............................................................................ 59
3.5 Supporting adolescents with HFA and their families ...................................... 73
3.6 Conclusion ....................................................................................................... 76
3.7 References ........................................................................................................ 78
Chapter 4: The perceptions and experiences of adolescent boys with autism spectrum
disorder: A personal construct psychology and family systems perspective
4.1 Abstract ............................................................................................................. 86
4.2 Introduction ...................................................................................................... 87
4.3 Aims ................................................................................................................. 89
4.4 Method ............................................................................................................. 90
4.5 Results .............................................................................................................. 94
4.6 Discussion ...................................................................................................... 103
4.7 Strengths and Limitations .............................................................................. 112
4.8 Clinical recommendations .............................................................................. 112
4.9 Conclusion ..................................................................................................... 115
4.10 References ...................................................................................................... 116
Chapter 5: Being a girl in a boys’ world: Investigating the experiences of girls with autism
spectrum disorders during adolescence
5.1 Abstract .......................................................................................................... 124
5.2 Introduction..................................................................................................... 125
5.3 Study Aims ..................................................................................................... 127
5.4 Method ............................................................................................................ 128
5.5 Results ............................................................................................................ 132
5.6 Discussion ....................................................................................................... 145
5.7 Limitations and Recommended Future Research ........................................... 149
5.8 Clinical Recommendations ............................................................................. 150
ix
5.9 Conclusion ...................................................................................................... 151
5.10 References....................................................................................................... 153
Chapter 6: Experiences of parents of adolescents with and without autism spectrum
disorder: Roles, responsibilities, challenges, and coping strategies
6.1 Abstract ........................................................................................................... 161
6.2 Introduction..................................................................................................... 162
6.3 Study Aims ..................................................................................................... 165
6.4 Method ............................................................................................................ 166
6.5 Results ............................................................................................................ 172
6.6 Discussion ...................................................................................................... 184
6.7 Strengths and limitations ................................................................................ 190
6.8 Conclusion ..................................................................................................... 191
6.9 References ...................................................................................................... 192
Chapter 7: Families living with autism spectrum disorder: Roles and responsibilities of
adolescent sisters
7.1 Abstract ........................................................................................................... 201
7.2 Introduction..................................................................................................... 202
7.2 Method ........................................................................................................... 205
7.4 Results ............................................................................................................ 210
7.5 Discussion ...................................................................................................... 219
7.6 Strengths and limitations ................................................................................ 223
7.7 Conclusion ..................................................................................................... 225
7.8 References ...................................................................................................... 226
Chapter 8: A personal constructivist approach for investigating the dependency patterns of
adolescents with autism spectrum disorder: Case study of three families
8.1 Abstract ........................................................................................................... 234
8.2 Introduction ..................................................................................................... 235
8.3 Study 1
8.3.1 Method. ..................................................................................................... 240
8.3.2 Results and discussion. ............................................................................. 244
x
8.4 Study 2:
8.4.1 Method. ...................................................................................................... 253
8.4.2 Results and discussion. .............................................................................. 254
8.5 General Discussion ......................................................................................... 259
8.6 Limitations ...................................................................................................... 261
8.7 Recommendations........................................................................................... 263
8.8 Conclusion ...................................................................................................... 265
8.9 References ....................................................................................................... 267
Chapter 9: Summary and conclusion ................................................................................. 276
9.1 Summary ......................................................................................................... 276
9.2 Conceptual contributions of the thesis ............................................................ 279
9.3 Clinical contributions of the thesis .................................................................. 281
9.4 Limitations and suggestions for future research ............................................. 283
9.5 Conclusion ...................................................................................................... 284
9.6 References....................................................................................................... 286
Appendices ........................................................................................................................ 289
xi
LIST OF TABLES
Table 2.1: Definitions of family systems concepts ................................................................ 31
Table 4.1: Demographic information ................................................................................... 92
Table 4.2: Thematic codes .................................................................................................... 95
Table 5.1: Demographic information ................................................................................. 130
Table 6.1: Demographic information ................................................................................. 168
Table 7.1: Demographic information ................................................................................ 207
Table 8.1: Demographic information for Study 1 and 2 .................................................... 240
Table 8.2: Summary measures of Grid 1 ............................................................................ 244
Table 8.3: Summary measures of Grid 2 ............................................................................ 249
Table 8.4: Summary measures for Family 1 ....................................................................... 255
Table 8.5: Summary measures for Family 2 ....................................................................... 256
Table 8.6: Summary measures for Family 3 ....................................................................... 258
xii
LIST OF FIGURES
Figure 8.1: The POSAC representation for Participant 1, Grid 1 ..................................... 245
Figure 8.2: The POSAC representation for Participant 2, Grid 1 ..................................... 246
Figure 8.3: The POSAC representation for Participant 3, Grid 1 ..................................... 248
Figure 8.4: The POSAC representation for Participant 1, Grid 2 ..................................... 250
Figure 8.5: The POSAC representation for Participant 2, Grid 2 ..................................... 251
Figure 8.6: The POSAC representation for Participant 3, Grid 2 ..................................... 252
xiii
THESIS PUBLICATIONS
Cridland, E.K., Caputi, P., Jones, S.C., & Magee, C.A. (2013). Understanding high
functioning autism during adolescence: A personal construct theory approach. The
Journal of Intellectual and Developmental Disability, 39(1), 108-118. DOI:
10.3109/13668250.2013.87033.
Cridland, E.K., Caputi, P., Jones, S.C., & Magee, C.A., (accepted August 2014). The
perceptions and experiences of adolescent boys with autism spectrum disorder: A
personal construct psychology and family systems perspective. Journal of
Intellectual and Developmental Disabilities.
Cridland, E.K., Jones, S.C., Caputi, P., & Magee, C.A. (2014). Being a girl in a boys’
world: Investigating the experiences of girls with autism spectrum disorders during
adolescence. Journal of Autism and Developmental Disorders, 44, 1261–1274. DOI:
10.1007/s10803-013-1985-6.
Cridland, E.K., Jones, S.C., Caputi, P., & Magee, C.A. (2014). Qualitative research with
families living with autism spectrum disorders: Recommendations for conducting
semi-structured interviews. Journal of Intellectual & Developmental Disability,
Advanced online edition. DOI: 10.3109/13668250.2014.964191. (Appendix A)
Cridland, E. K., Jones, S.C., Magee, C.A., & Caputi, P. (2013). Family focused autism
spectrum disorder research: A review of the utility of family systems approaches.
Autism, 18(3), 213-222. DOI: 10.1177/1362361312472261.
Cridland, E.K., Jones, S.C., Stoyles, G., Caputi, P., & Magee, C.A. (accepted November
2014). Families living with autism spectrum disorder: Roles and responsibilities of
adolescent sisters. Focus on Autism and Other Developmental Disabilities.
xiv
THESIS MANUSCRIPTS UNDER REVIEW
Cridland, E.K., Caputi, P., Jones, S.C., & Magee, C.A., (under review). A personal
constructivist approach for investigating the dependency patterns of adolescents
with autism spectrum disorder: Case study of three families. Journal of
Constructivist Psychology.
Cridland, E.K., Jones, S.C., Caputi, P., & Magee, C.A. (under review). Experiences of
parents of adolescents with and without autism spectrum disorder: Roles,
responsibilities, challenges, and coping strategies. Focus on Autism and Other
Developmental Disabilities.
xv
STATEMENT OF VERIFICATION
This statement verifies that the greater part of the work in the previously stated
publications/manuscripts are attributed to the candidate. Elizabeth Cridland, under the
guidance and supervision of her supervisors, took primary responsibility for the design
of each study, all data collection and analysis, prepared the first draft of each
manuscript, and prepared the papers for submission to relevant journals. Co-authors,
who were also supervisors to the candidate, contributed to the thesis by providing
guidance on the design and structure of each study, and provided editorial suggestions
for every paper.
Elizabeth Cridland (PhD Candidate)
Associate Professor Peter Caputi (Primary Supervisor)
xvi
OTHER CONTRIBUTIONS ARISING FROM THESIS
Cridland, E.K., Caputi, P., Jones, S.C., & Magee, C.A. (2013, July). Understanding high
functioning autism during adolescence: A personal construct theory approach. Paper
presented at the 20 th
International Congress on Personal Construct Psychology,
Sydney, Australia. (Appendix B)
Cridland, E.K., Caputi, P., Jones, S.C., & Magee, C.A. (2013, October). Puberty blues?
The experience of adolescence for individuals with Asperger’s syndrome and their
families. Presented at the University of Wollongong Three Minute Thesis Finals
Competition, Wollongong, Australia. (Appendix C)
Cridland, E.K., Caputi, P., Walker, B., Jones, S.C., & Magee, C.A. (2014, September). The
use of dependency grids when working clinically with families living with autism
spectrum disorder. Workshop presented at the 49th Australian Psychological Society
Annual Conference, Hobart, Australia. (Appendix D)
Cridland, E.K., Jones, S.C., Caputi, P., & Magee, C.A. (2013, December). Being a girl in a
boys’ world: Investigating the experiences of girls with autism spectrum disorders
during adolescence. Paper presented at the 22 nd
Annual PsychDD Conference,
Homebush, Australia. (Appendix E)
Chapter 1
1
CHAPTER 1: INTRODUCTION
1.1 Preamble
‘Everyone with Asperger’s Syndrome feels frustrated when people do not understand them.’
(Michael 2 , adolescent with Autism Spectrum Disorder)
There is currently a dearth of literature focusing on the lived experiences of
adolescents with Autism Spectrum Disorder (ASD) (Holiday-Willey, 2003; Jensen &
Spannagel, 2011; Levy & Perry, 2011). This thesis aims to address this significant
research gap by investigating the positive and negative experiences of adolescents with
ASD and their families. The research uses a qualitative approach, permitting unique and
detailed insights into the experiences of these individuals. The thesis is positioned in the
theoretical and methodological frameworks of Family Systems (FS) (Bowen, 1978;
1995) and Personal Constructivist (Kelly, 1955; 1966) approaches. The research
findings have the potential to directly inform evidence-based clinical interventions
targeted at adolescents with ASD and their families.
1.2 Autism Spectrum Disorder
Autism Spectrum Disorder is one of the most common neurodevelopmental
conditions, with an estimated prevalence of 1 in 1000 individuals (Duchan & Patel,
2012; Fombonne, 2003). The prevalence of ASD is comparable across most countries
for which data are available, including the United States (Centers for Disease Control
and Prevention, 2012; Duchan & Patel, 2012; Rice, 2009); England (Baron-Cohen et al.,
2009; Brugha et al., 2011; Ryszard, 2011); China (Sun & Allison,2010; Wong & Hui,
2 Participants’ names have been changed throughout thesis to preserve anonymity.
Chapter 1
2
2008); and Australia (Australian Advisory Board on Austism Spectrum Disorders
[Autism Australia], 2007; Buckley, 2013; Williams, MacDermott, Ridley, Glasson, &
Wray, 2008). In Australia, an estimated 125 000 individuals have ASD and over half a
million families are affected by the condition (Autism Australia, 2007).
The precise aetiology of ASD remains unclear, but it is generally agreed that the
condition is related to a dysfunction in the central nervous system (Kabot, Masi, &
Segal, 2003). Individuals with ASD experience persistent and significant social
communicative impairments, as well as restricted and repetitive behaviours and/or
interests (American Psychiatric Association [APA], 2013) (see Appendix F for
diagnostic criteria of ASD). In addition to these core impairments, individuals with
ASD often experience a range of sensory sensitivities, gastrointestinal issues, immune
system irregularities, and sleep disturbances (Attwood, 2007; Solomon & Chung, 2012).
These combinations of significant social impairment coupled with physical issues
exacerbate the challenging nature of this condition (Gray, 2003; Jensen & Spannagel,
2011; Seltzer et al., 2003).
Adolescents with Autism Spectrum Disorder
Adolescence is a critical period of development, involving a range of social,
emotional, physical, and cognitive changes (Damon & Hart, 1982; Erikson, 1982;
Levesque, 2011). The scope of these developmental changes often results in
adolescence being a particularly challenging period for individuals with ASD (Levy &
Perry, 2011; McGovern & Sigman, 2005; Samson, Phillips, Parker, Shah, Gross, &
Hardan, 2014; Stoddart, 1999). For example, during adolescence the complexity of
social interactions increases (Carrington, Templeton, & Papinczak, 2003; White &
Roberson-Nay, 2009), the importance of ‘fitting-in’ and conforming to social norms is
Chapter 1
3
heightened (Barnhill & Myles, 2001; Bolick, 2001; Boushey, 2007), and exposure to
and involvement in a broader range of social roles is encouraged (Levesque, 2011).
These developmental changes are coupled with heightened societal expectations
of social functioning (Barnhill & Myles, 2001). Many of the social peculiarities often
exhibited by individuals with ASD, such as unusual eye-contact, emotional bluntness,
self-centredness, and minimal reciprocity, are more likely to be viewed more negatively
during adolescence than during childhood years (Barnhill & Myles, 2001; Smith &
Simpson, 1998). Additionally, compared to younger individuals with ASD, adolescents
are likely to become aware of their social difficulties, their distinction from peers, and
the realm of interpersonal relationships they find elusive (Fullerton & Coyne, 1999;
Schroeder, Cappadocia, Bebko, Pepler, & Weiss, 2014; White & Roberson-Nay, 2009).
This growing awareness is understood to contribute to the high rates of anxiety,
depression, low self-esteem, and behavioural difficulties experienced by adolescents
with ASD (Lasgaard, Nielsen, Eriksen, & Goossens, 2010; Samson et al., 2014; White
& Roberson-Nay, 2009).
Families living with Autism Spectrum Disorders
Having a family member with a disability 3 reverberates throughout all aspects of
family life including meals, toileting, sleep, play, travel, education, and work (Solomon
& Chung, 2012). Compared to other conditions, ASD poses a range of distinct
challenges for families, such as management of inflexible daily routines, unique
intolerances, quick mood changes, and taking on unique roles such as mediator in social
3 In some contexts, ASD is considered a disability (National Disability Insurance Scheme, 2014). More
commonly, however, ASD is considered a condition (Attwood, 2007; Seligman & Darling, 2007).
Following this, and in respect for the participants involved in this research, ASD will be referred to as a
condition henceforth throughout the thesis.
Chapter 1
4
situations (Attwood, 2007; Heiman & Berger, 2007; Macks & Reeve, 2007; Pakenham,
Samios, & Sofronoff, 2005).
Adolescence is one of the most challenging developmental stages for families
living with ASD. Some key challenges during this period include management of
behavioural problems and sexual development; ongoing coping with the social and
emotional deficits inherent to the condition; managing the increased academic, social,
and cognitive demands of high school; and planning for future residential, vocational,
and leisure services (Hellemans, Colson, Verbraeken, Vermeiren, & Deboutte, 2007;
Hendricks & Wehman, 2009; Humphrey & Lewis, 2008; Kring, Greenberg, & Seltzer,
2009; Seltzer et al., 2003; Shattuck et al., 2007).
The range of distinct challenges inherent to living in a family with ASD has led
some researchers and clinicians to suggest that having a family member with ASD is a
chronically stressful experience (Carrillo, 2012; Heiman & Berger, 2007; Macks &
Reeve, 2007; Pakenham et al., 2005). However, improved understanding of the nature
of co-existing stress and enrichment has led to greater acknowledgment of the positive
effects of having a family member with ASD (Meadon & Stoner, 2010; Phelps,
McCammon, Wuensch, & Golden, 2009b; Strecker, Hazelwood, & Shakespeare-Finch,
2014; Taunt & Hastings, 2002). Such positive effects include, but are not limited to,
strengthened relationships, improved communication, and personal growth (Davis &
Gavidia-Payne, 2009; Higgins, Bailey, & Pearce, 2005; Phelps, Hodgson, McCammon,
& Lamson, 2009a; Rivers & Stoneman, 2003). This thesis aims to explore both
challenging and positive experiences of having an adolescent family member with ASD.
Chapter 1
5
1.3 Conceptual framework
This thesis is informed by two approaches; Family Systems (FS) (Bowen 1978;
1985) approaches and Personal Construct Theory (PCT) (Kelly, 1955; 1966). A brief
overview of each approach follows, including a discussion of the rationale for using the
two approaches in conjunction.
Family Systems approaches
Family Systems approaches emphasise the importance of understanding
individuals in relation to their family (Bowen, 1978, 1995; Hales & Glasscock, 1998;
Klein & White, 1996). In describing FS, Seligman and Darling (2007) proposed that
“the family is the primary and most powerful system to which a person will ever
belong” (p.18). From a FS perspective, families are considered to be distinct, interactive
social systems within which individual members have roles and responsibilities that
guide their behaviour and the functioning of the overall system (Edwards, 2011;
Seligman & Darling, 2007). Family Systems approaches consider there to be semi-
independent systems, or ‘subsystems’, operating within the FS. Traditional subsystems
include ‘parental’ (parents and child), ‘spousal’ (husband and wife), and ‘sibling’ (child
and child) (see Appendix G for further description of these subsystems).
Family functioning is a central concept in FS approaches. In this context, family
functioning is understood to involve the complex interplay of various elements, such as
emotional closeness, cognitive engagement, physical health habits, social
connectedness, communication, expectations, and interactions within a FS. Each family
has its own pattern of functioning (Carrillo, 2012). However, there are several factors
commonly used to measure family functioning, such as role dispersion and clarity,
functioning of boundaries within and outside of the FS, level of cohesion among family
Chapter 1
6
members, and adaptability of the FS. These factors are discussed in more detail in
Chapter 2.
Family Systems approaches offer a suitable conceptual framework for researching
families living with ASD given the complexity and heterogeneity of this condition and
the influences it has on all family members (Johnson, Frenn, Feetham, & Simpson,
2011; Lozzi-Toscano, 2004; Morgan, 1988; Seligman & Darling, 2007). Additionally,
the methodologies inherent to FS approaches are useful for understanding ASD as they
utilise the perspectives and experiences of various family members (Henry, Sager, &
Plunkett, 1996; Puig, Koro-Ljungberg, & Echevarria-Doan, 2008; Turnbull, Summers,
& Brotherson, 1984).
Utilising a FS approach for investigating the experiences of families living with
ASD during adolescence may be particularly efficacious considering the range of
changes in the family that generally occur during developmental transitions (Carrillo,
2012; Seligman & Darling, 2007; Turnbull, Summers, & Brotherson, 1986). That is,
whilst adolescence is traditionally considered in relation to the individual only, FS
approaches consider such developmental stages as family transition periods (Bray &
Hetherington, 1993; Fulmer, Medalie, & Lord, 1982). During such transition periods the
FS undergoes changes in structure and functioning as family members experience
adjustments to roles, boundaries, goals, level of cohesion, and expectations of one
another (Bray & Hetherington, 1993; Seligman & Darling, 2007). Family functioning
during transition periods is influenced by the management of, and adjustment to, these
changes. The functioning of families who have an adolescent family member with ASD
has not yet been adequately investigated (Dew, Balandin, & Llewellyn, 2008; Orsmond
& Seltzer, 2007).
Chapter 1
7
Personal Construct Theory
Personal Construct Theory is an approach to understanding human thought and
action that is derived from the clinical and theoretical work of George Kelly (1955).
Personal Construct Theory is grounded in the assumption that individuals construct a
subjective model of their world based on objective reality (Kelly, 1955; 1966). Referred
to as ‘personal constructs’, these individualised models of reality guide the way people
process and interpret their world.
Personal constructions are considered to develop over time from both direct and
anticipated experiences and interactions, meaning there are diverse ways in which
people can construe the world (Kelly, 1955; 1966). Furthermore, the philosophy of
constructive alternativism recognises that individuals have the capacity to change their
constructions through reconstruing processes. This capacity to change ways of viewing
the world promotes an optimistic outlook for individuals who hold ineffective or
maladaptive constructions and is the basis of PCT grounded therapy (Badzinski &
Anderson, 2012; Button, 1985; Epting & Amerikaner, 1980). Kelly (1955; 1966)
outlined the key concepts of PCT in a Fundamental Postulate and eleven corollaries (see
Appendix H).
Preliminary steps towards applying PCT and methodologies for understanding
individuals with ASD have suggested its utility for both research and clinical
interventions (Hare, Jones, & Paine, 1999; Procter, 2000, 2001; Sharma, Winter, &
McCarthy, 2012). The benefits of utilising a PCT framework with this population
include eloquent explanations about the construing processes of individuals with ASD
(Procter, 2000), and use of methodologies which suit the processing styles of
individuals with ASD (e.g., their general preference for structure, order, and sequence)
(Hare, 1997; Hare et al., 1999; Hare, Searson, & Knowles, 2011; Sharma et al., 2012).
Chapter 1
8
However, more work is needed to validate PCT with this population, especially amongst
adolescents and their families (Procter, 2001).
A combined Family Systems and Personal Construct Theory framework
There are various factors supporting the use of FS approaches and PCT in
conjunction. First, FS and PCT approaches are philosophically consistent as they are
both grounded in constructivism. This epistemological position emphasises that people
construct a subjective meaning of the world based on their experiences with objective
reality (Alexander & Neimeyer, 1989; Feixas, 1990; Giblin & Chan, 1995). When
applied to families, the constructivist position proposes that families develop shared
meanings and assumptions of the world resulting from shared experiences (Feixas,
1990; Procter, 1981; 1985; 1996).
Second, both FS and personal constructivist approaches recognise that having a
family member with ASD influences the FS, as both approaches acknowledge the
influence individual family members have on each other and on the FS in general
(Ferrari & Sussman, 1987; Procter, 2000, 2001; Seligman & Darling, 2007). Similarly,
both approaches recognise developmental periods as critical times. More specifically,
PCT considers developmental periods important due to the extensive revisions and
elaborations of personal and familial construct systems during these periods (Procter,
1985; 1996; Walker, Oades, Caputi, Stevens, & Crittenden, 2000). Family System
approaches consider developmental periods important due to the significant changes in
the organisation and functioning of the system as members adjust to alterations in roles,
boundaries, goals, and levels of cohesiveness which occur during transition periods
(Gavazzi & Sabettelli, 1990; Henry et al., 1996; Turnbull et al., 1986)
Chapter 1
9
1.4 Thesis aims
The overarching aim of this thesis is to better understand adolescents with ASD
and their families using FS and Personal Constructivist frameworks. Therefore, the
general aims of the thesis are to address the following research questions:
i. How can FS conceptual and methodological approaches help us better understand
the experiences of adolescents with ASD and their families?
ii. How can personal constructivist conceptual and methodological approaches help
us better understand the experiences of adolescents with ASD and their families?
In investigating the experiences of adolescents with ASD, the second Phase of
research uses qualitative methodology to capture the perspectives of the adolescents
themselves and family members (mothers, fathers, and adolescent siblings). More
specifically, this Phase of the research aims to answer the following research questions:
iii. What are the lived experiences of adolescents with ASD?
iv. What are the lived experiences of parents of adolescents with ASD?
v. What are the lived experiences of adolescent siblings of adolescents with ASD?
Some of the challenges experienced by adolescents with ASD highlighted by the
qualitative investigations will be used to inform the third Phase of research. More
specifically, Phase Three will investigate the ways adolescents with ASD seek help from
their family members and the types of support they prefer. Phase Three uses a combined FS
and personal constructivist approach and aims to answer the following research questions:
vi. What are the dependency patterns of adolescents with ASD? More specifically,
on whom do the adolescents rely on and what types of support do they prefer?
vii. What levels of awareness do family members have of the adolescents’
dependency patterns?
Chapter 1
10
1.5 Thesis structure
This thesis is presented as a collection of manuscripts prepared for publication;
with each chapter presenting a manuscript written for a specific journal. The structure of
each manuscript is consistent with the style used by the journal for which it is written.
References to Appendices have been included in the manuscripts for the reviewers’
convenience. In keeping with journal preferences, different terms have been used
throughout the thesis to reference ASD. This issue was compounded with the
introduction of the DSM-V (APA, 2013) mid-way through thesis production, and the
resulting elimination of diagnostic sub-categories within the autism spectrum (See
Appendices I, J, and K for DSM-IV-TR diagnostic criteria).
In addressing the thesis aims, the chapters relate to the various Phases of research.
The first two manuscripts (Chapters 2 and 3) outline the conceptual and methodological
application of FS approaches and PCT, respectively, for understanding adolescents with
ASD. The following four manuscripts (Chapters 4, 5, 6, and 7) present the qualitative
investigations of the experiences of adolescents with ASD and their family members.
Each manuscript focuses on a specific individual or subsystem within the FS, whilst
utilising the perspectives of various family members. Specifically, Chapters 4 and 5
outline the experiences of adolescent boys and girls with ASD, respectively. Chapter 6
focuses on the experiences of parents, with particular attention to the roles undertaken
and the coping strategies used when parenting an adolescent with ASD. Chapter 7
focuses on the experiences of adolescent neurotypically developing (NTD) sisters, with
particular attention to the roles and responsibilities they undertake at home and school,
and the influence this has on their wellbeing and family functioning.
Chapter 8 presents the third Phase of the thesis research, which involved a
combined personal constructivist and FS approach to investigating the dependency
Chapter 1
11
patterns of adolescents with ASD. More specifically, participants completed a series of
dependency grids which provided insights regarding whom the adolescents depended on
in a range of challenging situations and what types of support they sought. The
investigation also included family members to explore their level of awareness of the
adolescents’ dependency preferences. Findings are considered in relation to both
research and clinical implications.
Chapter 9 summarizes the findings from the three Phases of research. This chapter
also considers thesis implications and limitations, and is followed by recommendations
for future research and overall thesis conclusions.
1.6 Significance and originality
This research is novel in its conjunctive use of FS and personal constructivist
approaches for investigating the experiences of adolescents with ASD and their
families. Understanding ASD in the context of these conceptual frameworks is
significant as it offers a unique perspective into the experiences of adolescents with
ASD and their families. Such relational family research is important given the pervasive
effect this disorder has on families and the dearth of literature to date focusing on this
topic.
There is a need for evidence-based clinical approaches targeted specifically at
adolescents with ASD, given the range of new experiences and challenges these
individuals face during adolescence (Bradford, 2010; Carrillo, 2012; Griffith, Totsika,
Nash, & Hastings, 2011; Solomon & Chung, 2012). The research findings presented in
this thesis have the potential to make significant contributions to clinical psychology by
directly informing clinical interventions for adolescents with ASD and their families.
Further, by investigating the experiences of various family members, the research
Chapter 1
12
findings have the potential to inform clinical approaches targeted at systemic,
subsystemic, and individual levels within the FS.
Chapter 1
13
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CHAPTER 2: FAMILY-FOCUSED AUTISM SPECTRU M DISORDER RESEARCH:
A REVIEW OF THE UTILITY OF FAMILY SYSTEMS APPROACHES
Cridland, E.K., Jones, S.C., Magee, C.A., & Caputi, P. (2013). Family focused autism
spectrum disorder research: A review of the utility of family systems
approaches. Autism, 18(3), 213-222. DOI: 10.1177/1362361312472261.
2.1 Abstract
A family member with an autism spectrum disorder presents pervasive
and bidirectional influences on the entire family system, suggesting a need
for family-focused autism spectrum disorder research. While there has
been increasing interest in this research area, family-focused autism
spectrum disorder research can still be considered relatively recent, and
there are limitations to the existing literature. The purpose of this article is
to provide theoretical and methodological directions for future family-
focused autism spectrum disorder research. In particular, this article
proposes Family Systems approaches as a common theoretical framework
for future family-focused autism spectrum disorder research by
considering theoretical concepts such as Boundaries, Ambiguous Loss,
Resilience and Traumatic Growth. We discuss reasons why these concepts
are important to researching families living with autism spectrum disorder
and provide recommendations for future research. The potential for
research grounded in Family Systems approaches to influence clinical
support services is also discussed.
Chapter 2
25
Family focused autism spectrum disorder research:
A review of the utility of family systems approaches
2.2 Introduction
Autism spectrum disorders (ASD) describe a variety of lifelong and pervasive
developmental disorders that affect individuals and, importantly, their family in a
variety of ways (Macks & Reeve, 2007; Reichman et al., 2008). For this reason,
families who have a member with ASD can be referred to as families living with
ASD (Neely-Barnes et al., 2011). Family-focused ASD research is critical for
increasing our understanding of the impact of these disorders and informing clinical
support services for these families. Such research is becoming more common,
exploring issues such as the challenges and benefits ASD has on families, ways to
support families living with ASD and the impact of ASD on siblings. However, the
area of family-focused ASD research still remains underdeveloped as we are only
beginning to understand the intricate, reciprocal influences between an individual
with ASD and other family members (Orsmond & Seltzer, 2007).
This article briefly reviews key areas of existing family-focused ASD research
to highlight the need for a common theoretical framework in this area. We propose
that Family Systems (FS) approaches represent such a framework. Greater utilisation
of FS approaches for future research is not intended to be a solution to all limitations
of research in this area; however, these approaches could drive and inform future
research. Our call for greater utilisation of FS approaches in this area is not recent
(e.g. Trute & Hauch, 1988; Morgan, 1988) or in isolation (e.g. Jensen & Spannagel,
2011) but is necessary to bring more attention to this issue. In proposing FS
Chapter 2
26
approaches, we discuss the theoretical and methodological advantages of these
approaches and discuss research and clinical implications.
2.3 Family-focused ASD research to date and its limitations
It is recognised that having a family member with ASD poses a range of
distinct challenges on family members. Such challenges include, but are not limited
to, accommodation of inflexible daily routines, lack of spontaneity, management of
unique intolerances and sudden mood changes, and being mediators in social
interactions (Attwood, 2007; Heiman & Berger, 2007; Macks & Reeve, 2007;
Pakenham et al., 2005). Additionally, approximately one-third of individuals with
ASD require assistance with self-care, mobility, communication and cognitive or
emotional tasks on a daily basis; the majority of this care is provided by family
members (Australian Bureau of Statistics, 2011; World Health Organization, 2005).
Due to these and other issues, many families living with ASD experience more stress
than families with both neurotypically developing children and children with other
disabilities (Altiere & Von Kluge, 2009; Hastings, 2003b; Johnson et al., 2011;
Miodrag & Hodapp, 2010; Rao & Beidel, 2009). Additionally, some families living
with ASD report negative outcomes on family functioning, evidenced by higher
levels of psychological problems, greater emotion rather than problem-focused
coping strategies and higher family conflict (Meadon & Stoner, 2010; Phelps et al.,
2009b).
Many studies focus on the challenges for families living with ASD, and
although these findings are useful, they can be limited by basic research designs,
which often overlook the complexity of the FS. For example, ‘stress’ is often
Chapter 2
27
examined in a fragmented manner as studies rarely synthesise the broad range of
contributing factors, such as dispersion of responsibilities, boundaries between
family members and personal meanings of having a family member with ASD
(Lecavalier et al., 2006; Miodrag & Hodapp, 2010). Another important limitation is
that there is reliance on maternal perspectives as representative of the whole family
(Phelps et al., 2009b; Smith et al., 2010). Maternal perspectives are important but
may not necessarily reflect those of other family members (Seligman & Darling,
2007). Guite et al. (2004), for instance, compared responses of mothers and siblings
of individuals with developmental disabilities and found some discordance, with
mothers reporting more sibling adjustment problems compared to the sibling self-
reports. Available research highlights the limitations of basic research designs in
attempting to explore the complex interplay of factors contributing to the challenges
for families living with ASD.
A comprehensive understanding of the challenges for families living with ASD
also warrants investigation of coping and support mechanisms. Research in this area
highlights the importance of both formal and informal supports for providing
information: a means to communicate experiences, feelings, frustrations,
expectations and achievements and practical help such as finances and respite
(Heiman & Berger, 2007; Phelps et al., 2009b). While there has been research
interest focusing on the best types of support for families living with ASD (Hastings,
2003a; Luther et al., 2005; Müller et al., 2008), there remains minimal understanding
of the ways different family members provide support for each other (Seligman &
Darling, 2007). For example, preliminary research suggests mothers and fathers
differ in the types of support they provide for their families (emotional versus
Chapter 2
28
practical support, respectively) (Seligman & Darling, 2007). Research focusing
within families is critical for developing an understanding of how to best support
families living with ASD. Furthermore, there is limited research focusing on the
influence of support from extended family, despite preliminary research highlighting
the unique contributions of such support on family functioning (Blackledge & Hayes,
2006; Davis & Gavidia-Payne, 2009; Hastings, 2003b; Rao & Beidel, 2009). For
example, Davis and Gavidia-Payne (2009) found extended family member’s support
influenced parenting satisfaction and quality of family interactions.
Existing research also recognises the positive influences of ASD on family
functioning, including psychological and emotional strength, improved
communication skills and higher levels of empathy and patience (Bayat, 2007; Davis
& Gavidia-Payne, 2009; Pakenham et al., 2011). For example, many mothers report
various psychological benefits attributed to parenting a child with ASD including
selflessness, compassion, peace during time of uncertainty and a refocus of energy
(Bauminger, 2002; Bayat, 2007; Phelps et al., 2009b). Research into the positive
impacts of ASD on families is encouraging but is only relatively recent. Furthermore,
there are a range of areas that would benefit from further research, such as
Resilience, Traumatic Growth, family connectedness, spiritual development,
appreciation of life and enrichment of relationships (Brewin et al., 2008; Phelps et
al., 2009a). This recommendation is in line with previous calls for positive
psychology approaches within developmental disabilities research (Bayat, 2007;
Hastings & Taunt, 2002; Pakenham et al., 2011).
The impact of having a sibling with ASD on neurotypically developing
individuals has been another predominant research area. Research findings have
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indicated mixed results, with some reporting positive effects in areas such as self-
concept and self-competence (Macks & Reeve, 2007; Rao & Beidel, 2009), and
others reporting negative effects such as embarrassment (Mascha & Boucher, 2006;
Orsmond & Seltzer, 2007) and increased emotional and behavioural issues (Dew et
al., 2008; Meadon & Stoner, 2010). On the other hand, some researchers report no
differential impact in areas such as self-concept, self-efficacy and locus of control
(Meadon & Stoner, 2010; Vliem, 2009). These mixed results have been interpreted in
various ways. For example, that having a sibling with ASD has positive, neutral or
negative influences on neurotypically developing siblings. Alternatively, the mixed
findings could reflect the varied and dynamic nature of sibling relationships,
suggesting that a straightforward ‘cause–effect’ explanation is too simplistic
(Seligman & Darling, 2007). Additionally, the mixed findings can be attributed to
factors not accounted for in research designs, such as age, sex or birth order of
siblings; comparison group used (e.g. neurotypically developing dyads vs dyads with
other developmental disorders); information source; family size; parental
relationships and a range of demographic factors such as socio-economic status,
nationality and location (Ross & Cuskelly, 2006). These inconsistent findings and
interpretations continue because studies are generally interpreted in isolation
(Stoneman, 2005; Swanson, 1988).
2.4 Common theoretical framework
Although previous research addresses various important issues for families
living with ASD, the literature lacks a common theoretical framework. The benefits
of a theoretically driven body of work include utilisation of common terminology to
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improve communication of findings, research methodologies grounded in
theoretically sound concepts and greater synthesis of results from various individual
research studies allowing for detection of emerging patterns (Swanson, 1988).
Without appropriate theoretical frameworks, studies are more likely to be influenced
by extraneous factors such as social consensus, samples of convenience,
opportunities for immediate applications and researcher preferences (Siegel, 1988;
Swanson, 1988; Waterhouse, 2008).
Family System approaches
Systems theories are derived from General Systems Theory, an
interdisciplinary approach that has been conceptualised as a Weltanschauung or
‘unique worldview’ (Von Bertalanffy, 1950). General Systems Theory upholds the
importance of interpreting events, situations and people within their environment
rather than in isolation (Becvar & Becvar, 1982; Von Bertalanffy, 1950, 1974;
Whitchurch & Constantine, 1993). From this perspective, the application of General
Systems Theory to individuals involves understanding them in relation to the other
people in their life.
Applications of systems approaches to families are referred to as FS
approaches. FS approaches consider families as unique interactive and reactive units,
with their own basic social system of rules, values and goals (Edwards, 2011). There
is no single systems theory about families (Cox & Paley, 1997; Klein & White,
1996); therefore, throughout this article, the various FS theories will be referred to as
FS approaches. These approaches encompass a wide variety of concepts and
variables. Rather than discussing all of these in detail, Table 2.1 provides an
overview of some of the main FS concepts, which are relevant to family-focused
ASD research.
3 1
Table 2.1: Definitions of family systems concepts
Theoretical Concept
Definition
Family System In general, describes all individuals a family counts on over time for comfort, care, nurturance, support and emotional closeness.
Family Functioning Complex interplay of various elements, such as emotional closeness, cognitive engagement, physical health habits, social connectedness,
communication, expectations and interactions. Degree of functioning ranges from positive to negative.
Macroscopic approach A FS approach that focuses on the FS in relation to other systems.
Microscopic approach A FS approach that focuses on subsystems within the family.
Subsystem Semi-independent systems operating within the FS. Common subsystems include; ‘maternal’ (mother and child), ‘paternal’ (father and
child), ‘parental’ (both parents with child), ‘marital’ (husband and wife), and ‘sibling’ (child and child). Subsystems are also referred to as
dyads when referring to two person relationships.
Boundaries Hypothetical borders between and within a FS and its environment. The External Boundary defines the family in relation to other systems.
Internal Boundaries determine who is included and excluded in the subsystems. Individuals within a FS also have Personal Boundaries.
Permeability Degree of difficulty or ease that information and system members have in crossing the Boundaries. Ranges from open to closed. Open
systems can be ‘weak’ as boundaries are loosely defined resulting in confusion about family roles, identities and goals. Closed systems can
be rigid and restrict information permitted into system, limiting physical, psychological and social growth.
Boundary Ambiguity Confusion about roles and responsibilities experienced by family members resulting from poorly regulated boundaries.
Ambiguous Loss Complicated or unclear loss resulting from either physical loss of a person whilst retaining their psychological presence (eg; missing person)
or the physical presence of a person whilst experiencing a loss or change in their psychological state (family member with ASD).
Resilience Ability to cope with challenging life circumstances. Includes physical, psychological, emotional, and social resilience.
Traumatic Growth An extension of Resilience where coping involves positive change as a result of challenging life circumstances. Such as increases in
appreciation of life, personal strength, family solidarity, and quality of relationships.
FS: Family Systems; ASD: Autism Spectrum Disorder.
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Macroscopic and microscopic FS approaches. FS approaches vary with
regard to the scope of their focus. Macroscopic FS approaches (Table 2.1) focus
on the ways families interact with other systems, such as the community, other
families, schools and social groups (e.g. Turnbull et al., 1984, 1986). Microscopic
FS approaches (Table 2.1) examine relationships within the family, such as
maternal, marital and/or sibling subsystems (e.g. Bowen, 1995; Bowen & Kerr,
1988). Both macroscopic and microscopic approaches are important when
researching families living with ASD, as they focus on different aspects of family
functioning. For example, Brewin et al. (2008) examined parents’ perspectives
regarding factors contributing their child’s quality of school experience. Major
themes were identified across various systems including presentation of ASD in
the child, classroom factors, school factors and institutional factors in the
education system (Brewin et al., 2008). Importantly, without utilising FS
approaches, previous research has rarely explored relationships between subsys-
tems. This is important for addressing key research areas such as ways in which
the marital relationship influences the functioning of sibling relationships or the
ways in which a maternal relationship differs from a paternal relationship. This
distinction is important given that relations within and between subsystems affect
family functioning (Hastings, 2003b; Meadon & Stoner, 2010).
Boundaries. According to FS approaches, the concept of Boundaries (Table
2.1) is central to understanding family functioning (Becvar & Becvar, 1982;
Carroll et al., 2007) and is therefore relevant to researching families living with
ASD (Seligman & Darling, 2007). The functioning of Boundaries is measured by
their permeability (Table 2.1). Permeability of boundaries is necessary for
families to manage life events such as job changes and moving house (Seligman
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& Darling, 2007). Optimally functioning families develop a balance between open
and closed boundaries (Becvar & Becvar, 1982; Seligman & Darling, 2007). For
example, Bayat (2007) reported that the most resilient families living with ASD in
their study were able to be flexible in role and responsibility changes as well as
communicate with each other about personal needs.
Poorly regulated boundaries can impact family functioning in various ways.
According to FS approaches, two such ways are experiences of Boundary
Ambiguity and Ambiguous Loss (Table 2.1). These experiences may be par-
ticularly important for families living with ASD due to the range of ongoing
adjustments associated with ASD (O’Brien, 2007). For example, Boundary
Ambiguity may result when neurotypically developing siblings become involved
in some household and care-giving responsibilities usually reserved for parents
(Smith, 2000). Boundary Ambiguity can also occur when the identities of
individuals become enmeshed (Carroll et al., 2007). For instance, parents who are
preoccupied with their child’s ASD may have difficulty viewing their own life as
independent from their child’s experiences (O’Brien, 2007).
Families may also be more vulnerable to Boundary Ambiguity during
transition periods (such as developmental changes), as these periods normally
involve large adjustments of roles and expectations for all family members (Bray
& Hetherington, 1993; Seligman & Darling, 2007). When considering families
living with ASD, there are likely to be unique transition periods related to ASD
such as the period of diagnosis (Phelps et al., 2009b; Seligman & Darling, 2007).
Additionally, ‘universal’ transition periods, such as adolescence, are likely to
involve different issues for individuals with ASD and their families (Phelps et al.,
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2009b). Such transition periods have not yet been adequately mapped (Phelps et
al., 2009b).
Ambiguous Loss may be particularly relevant to families living with ASD
(Boss, 1994). For example, family members may perceive the family member
with ASD as physically present yet psychologically absent (Boss, 2004). This
experience may be particularly evident during the period of diagnosis, as it often
involves a range of emotions including uncertainty about the clarity and
repercussions of the diagnosis (O’Brien, 2007). Other factors that may contribute
to vulnerability to Ambiguous Loss in families living with ASD include the
unpredictable, heterogeneous and challenging nature of ASD, the high day-to-day
variability in functioning, wide ranging patterns of strengths and weaknesses, and
broad ranging responses to treatment (O’Brien, 2007). Furthermore, fluctuating
emotional experiences ranging from hope for improved functioning (or for some
families hope for discovery of a ‘cure’ for ASD) to feelings of hopelessness or
frustration during difficult situations, mixed with feelings of love, pride and joy,
may make some families living with ASD vulnerable to Ambiguous Loss
(O’Brien, 2007). These experiences may be further complicated by the feelings of
guilt when reflecting on the ‘negative’ emotions mentioned earlier (Boss, 1999,
2004; O’Brien, 2007).
Notably, such reactions are not necessarily long term and do not develop in
all families living with ASD. Instead, it appears that most families adapt and cope
effectively with childhood disability (Seligman & Darling, 2007).The multilevel
approaches supported by FS approaches are especially important for
understanding perceived issues like Boundary Ambiguity and Ambiguous Loss as
perceptions may vary across subsystems.
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Resilience and Traumatic Growth. Resilience and Traumatic Growth
(Table 2.1) are two positive facets of family functioning outlined in FS
approaches. In this context, Resilience is apparent in families who make active
efforts to spend time with each other, balance needs of the family member with
ASD with needs of other family members, maintain healthy routines, hold shared
values, find meaning in challenging circumstances, have flexible roles, utilise
support services, openly communicate and have proactive approaches to
challenges (Seligman & Darling, 2007).
In recognising the possibility of distress and growth coexisting, Traumatic
Growth has been considered particularly suited to the challenging yet rewarding
nature of ASDs (Heiman & Berger, 2007). Traumatic Growth is applicable for
families living with ASD in a range of ways. As discussed, initially, a diagnosis of
ASD for a family member may be perceived as a distressing loss as it involves
realisations that they will not develop typically, possible confusion around the
individual’s identity and re-evaluating expectations and responsibilities of all
family members (O’Brien, 2007). However, coupled with this may be experiences
of relief, validation and over time understanding and acceptance of having a
family member with ASD (Phelps et al., 2009a; Samios et al., 2012)
2.5 Implications for clinical support services
The importance of clinical support services on functioning for families
living with ASD has been documented (Bradford, 2010; Seligman & Darling,
2007). Clinical support services are a type of formal social support that increases
well-being, knowledge about the disorder, family functioning, Resilience and
perceived competence, and reduces subjective distress (Bagatell, 2007; Bradford,
Chapter 2
36
2010; Phelps et al., 2009b; Seligman & Darling, 2007). Therapists may also
provide informative and emotional support, help the family respond to grief or
confusion, act as role models, improve family capacity building skills (Pinkerton
& Dolan, 2007; Russo, 1999; Wetherby & Woods, 2006; Woods & Brown, 2011)
and encourage acceptance and even appreciation for an individual’s or family’s
situation (Bagatell, 2007; Bradford, 2010; Seligman & Darling, 2007).
There are several ways family-focused ASD research grounded in FS
approaches can directly inform clinical support services, as follows.
1. FS approaches encourage research to focus on various aspects of the FS (e.g.,
individual, subsystemic and macroscopic). This will result in clinical
interventions that can be targeted at individuals, subsystems and the systemic
level. Importantly, the interrelations of subsystems can also be targeted.
2. FS approaches encourage inclusive approaches to research designs.
Interventions based on such research will encourage all family members to be
involved in therapy. This may involve including people outside the traditional
scope of ‘family therapy’ such as extended family, friends or in-home
therapists.
3. The utilisation of theoretically grounded FS concepts (such as Boundaries,
Ambiguous Loss and Traumatic Growth) means clinical support services will
be both theoretically and empirically evidenced based.
4. As FS concepts cover both positive and negative aspects of family
functioning, research may inform holistic, strengths-based approaches.
Strengths-based approaches help families utilise their own resources and
recognise their own capacities for resilience (Bayat, 2007). The efficacy of
such approaches is supported in the literature for both families with young and
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adolescent children (Allison et al., 2003; Cosden et al., 2006; Early & Glen-
Maye, 2000; McGuire, 2009; Sargent, 1991).
5. FS approaches recognise the heterogeneity of families and ASD alike. This
recognition promotes individualised clinical support services for each family
living with ASD.
6. FS approaches recognise that family functioning changes across time and in
response to life events and transition periods. This recognition translates to
clinical support services that promote opportunities for improved family
functioning, regardless of current challenges.
2.6 Implications for future research
Based on the issues raised in this article, we recommend that the following
areas be considered in future research. For each of these areas, we provide
examples of research that has been conducted and requires expansion.
1. It is important to embrace flexible and inclusive approaches to researching
‘families’. Such approaches recognise the importance of involving various
system members, and in doing so, gain a rich understanding of family
functioning. For example, in comparing the efficacy of individual versus
family therapy for individuals with Asperger’s syndrome (AS), Stoddart
(1999) interviewed individuals with AS, parents and also clinicians in order
to understand the issue from all perspectives. The multidimensional
perspectives highlighted the multifaceted ways family therapy impacts the FS
at various levels (Stoddart, 1999). For example, one family reported that
knowledge gained about AS affected their interactions with their family
Chapter 2
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member with AS and also allowed them to communicate better with extended
family members about AS (Stoddart, 1999).
2. Future research would benefit from investigating both positive and negative
factors contributing to family functioning. This may include investigation of
theoretical concepts grounded in FS approaches, such as Boundaries,
Resilience, Traumatic Growth and Ambiguous Loss. For example, one study
investigating the lived experiences of mothers reported benefits associated
with living with ASD in a range of areas including social opportunities,
health, employment and strengthening of family subsystems (Markoulakis et
al., 2012).
3. There is a need to design studies targeted at various aspects of the FS
(individualistic, subsystemic and macroscopic) to explore complex issues
such as stress, coping and supports. For example, Hastings (2003b) explored
the interrelationships of psychological well-being between mothers and
fathers of children with ASD and found various ways in which the mental
health of one individual affected their partner and other family members.
4. FS approaches recognise the importance of researching families during
transition periods. Transition periods with minimal research attention include
adolescence and young adulthood (Baker et al., 2011; Gerhardt & Lainer,
2011; Griffith et al., 2011; Levy & Perry, 2011). This continues despite
preliminary research indicating a range of important issues for families and
individuals with ASD during these periods. For example, the transition from
primary school to high school requires management of large amounts of
unstructured activities (bus rides, changing classes and study periods)
(Adreon & Stella, 2001). A common theoretical framework for family-
Chapter 2
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focused ASD research may help identify transition periods warranting greater
research attention.
5. It is important to consider the impact of living with ASD (on individuals and
families) across all developmental stages. The predominant focus of research
has been childhood (for both individuals with ASD and siblings), with little
research focusing on young adulthood and beyond (Baker et al., 2011).
Research focusing on ‘childhood’ may also be too broad to identify factors
most influential during specific developmental periods (Bauminger et al.,
2003; Orsmond & Seltzer, 2007). For example, a meta-analysis of the sibling
ASD literature published from 1970 to 2005 indicated that 17 of the 21
studies had participants ranging from age 2 to 18 years (Dew et al., 2008). In
recognising the importance of developmental stage, research utilising FS
approaches may avoid this limitation.
6. The inclusive nature of FS approaches recognises the importance of involving
individuals with ASD (Bayat, 2007). This suggestion may seem self-evident;
however, numerous studies examining families living with ASD do not
include the perspectives of the individual with ASD (Brewin et al., 2008;
Dew et al., 2008; Rao & Beidel, 2009). This trend seems well ingrained in
disability research. For example, a review of sibling research identified that
the individual with a developmental disability was included in only 2 out of
21 studies (Dew et al., 2008).
7. As FS approaches recognise the fluctuating nature of family functioning over
time, research grounded in these approaches may utilise longitudinal designs.
Preliminary research suggests that the meaning of having a family member
with ASD may change over time; however, the nature of such change and the
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40
ways the FS and other systems influence change remain unclear. For
example, Altiere and Von Kluge (2009) interviewed parents about their
families’ meaning-making of living with ASD and found that various changes
were reported to have occurred over time such as questioning, devastation,
personal struggles, as well as personal, family and child benefits. To date,
such research usually relies on recall of experiences rather than tracking
participants over time, which may limit the validity of responses.
Longitudinal research grounded in FS approaches could be one way of
addressing this limitation.
Methodological implications
There are a range of methodological considerations when designing and
conducting research with individuals with ASD and their families. Consideration
of the range of potential difficulties in conducting research with individuals with
ASD and their families is likely to have deterred some researchers from pursuing
research in this field. Yet, importantly, the potential difficulty of conducting
research in this area does not decrease the need for research with families living
with ASD. FS approaches not only provide a theoretically sound framework for
conducting research in this area, but also address many of the methodological
challenges associated with research in this area.
We propose that the following issues may be considered when conducting
research with families living with ASD:
1. Wording of instructions and questions should suit the processing styles of
children and individuals with ASD (e.g. concrete and single-faceted
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41
sentences). This may involve including step-by-step, written instructions,
rather than complicated verbal instructions.
2. Consider using alternative methodologies to verbal conversations, such as
drawings or photographs (Ravenette, 1997, 2005) or multimedia (Wyn &
Harris, 2004).
3. Be aware of the potential for linguistic confusions. Misinterpretations may be
from the individual with ASD (e.g. literal interpretations of phrases,
misunderstanding words with double meanings or difficulty articulating
experiences) or the researcher (e.g. misunderstanding an individual’s specific
meaning of a particular word). To avoid misinterpretations, researchers can
involve participants in interpretation of findings (Dockett et al., 2009).
4. Ensure participation of all family members is based on voluntary and informed
consent. This may involve asking children and individuals with ASD to
describe their understanding of the study’s aims and procedures and what they
will be asked to do.
5. Attempt to prepare participants for the range of personal experiences that may
be focused on during the study. This may also involve managing unexpected
or negative reactions related to issues focused on during the study.
6. Consider using qualitative approaches that are supported by FS approaches.
Such approaches provide opportunities to capture subjective experiences and
understand complex patterns of relationships between individuals and
subsystems (Carrington & Graham, 2001). Furthermore, qualitative
approaches have the potential to capture idiographic, multifaceted issues often
present in the families by avoiding predetermined and sometimes restrictive
response options of quantitative approaches. Furthermore, qualitative
Chapter 2
42
approaches are useful for conducting research with children (Dockett et al.,
2009; Mishna et al., 2004). Notably, there are justifiable reasons for utilisation
of quantitative approaches (i.e. standardised measurements and greater
opportunity for generalisation). However, these approaches may benefit from
being complemented with qualitative sections (i.e. mixed methods
approaches) in FS research.
Statistical analysis recommendations
An array of statistical techniques is available to researchers applying FS
approaches to individuals with ASD and their families. A comprehensive review
of available strategies is beyond the scope of this article. Instead, we briefly com-
ment on some analytic techniques that can be used in future family-focused ASD
research utilising FS approaches.
1. It is important to note that FS data are inherently interdependent. For instance,
while interested in how a child’s characteristics influence his or her behaviour,
we may also be interested in how characteristics of a parent influence the
child’s behaviour. It is appropriate then that the interdependence in dyadic
relationships, such as that between parent and child, is modelled and tested
using appropriate strategies. Cook and Kenny’s (2005) actor–partner
interdependence model is an illustration of modelling the concept of
interdependence using appropriate techniques. This approach highlights the
application of structural equation modelling and multilevel modelling to
longitudinal dyadic data (Cook & Kenny, 2005). Campbell and Kashy (2002)
provide a more comprehensive review of the actor–partner interdependence
model. This approach was used to examine the degree of non-independence in
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43
sense-making and benefit finding between mothers and fathers of children
with AS (Samios et al., 2012). Results indicated that overall meaning-making
was interrelated between partners (Samios et al., 2012), highlighting the
importance of adopting an interpersonal approach to analyse family data.
2. Data from FS research have certain characteristics that need to be considered
during analysis. Data are usually nested or hierarchical in nature. For instance,
children are members of families – they are nested within families. Studies
may also collect inter-generational data. Multilevel models can account for the
interdependence inherent in nested data structures evident in FS approaches. It
is recommended that researchers use, where appropriate, analytical techniques
that model the characteristics of FS data. Examples of applications of
multilevel models in family research include Snijders and Kenny (1999) and
Jenkins et al. (2005).
3. It is important to consider the ways in which family dynamics may influence
the analysis and interpretation of findings. Such considerations may include
family size (e.g. number of siblings), sibling ages and genders and blended
families.
2.7 Conclusion
There remains limited research focusing on families living with ASD (Orsmond &
Seltzer, 2007). This is of concern given the diverse and pervasive impacts these
conditions have on families. Of the research that is available, it can be difficult to
synthesise findings due to limited use of a common theoretical direction. This article
highlights some of the limitations in the existing literature and proposes the efficacy of
FS approaches as a guiding framework for future family-focused ASD research. The
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benefits of FS approaches involve the inclusion of theoretically sound concepts,
balanced focus of both positive and negative factors involved in family functioning and
inclusion of all family members in research methodologies. If future family-focused
ASD research utilises a common framework, such as FS approaches, then the research
findings of individual studies may be synthesised and emerging patterns made more
salient. Furthermore, reviewing the findings of past research through a FS lens may lead
to further insights and alternate interpretations of some existing research findings.
Together, this will result in a deeper understanding of research findings, which will
potentially inform evidence-based clinical support services for families living with
ASD. All these benefits contribute to our overall goal of learning about the best ways to
support families living with ASD.
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45
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CHAPTER 3: UNDERSTANDING HIGH FUNCTIONING AUTISM DURING
ADOLESCENCE: A PERSONAL CONSTRUCT THEORY APPROACH
Cridland, E.K., Caputi, P. Jones, S.C., & Magee, C.A. (2014). Understanding high
functioning autism during adolescence: A personal construct theory approach.
Journal of Intellectual and Developmental Disability, 39(1), 108-118. DOI
10.3109/13668250.2013.87033
3.1 Abstract
Background: Personal construct theory (PCT) is a constructivist approach to
understanding human thought and action. Preliminary research focusing on
applying PCT concepts and methodologies to understanding individuals
with high functioning autism (HFA) has suggested its utility for both
research and clinical interventions. The developmental period of
adolescence has also been outlined according to PCT. However, PCT has
not been applied to the more specific subgroup of adolescents with HFA,
despite various theoretical tenets suggesting its utility. Conclusions: In
addressing this research gap, we considered the following adolescent
developmental tasks with particular reference to adolescents with HFA: (a)
functioning within the increasingly complex world of adulthood, (b) identity
development, and (c) development of higher order processing styles
(including abstract thinking and flexible processing). These issues were
described using PCT concepts. Finally, we considered ways to support
individuals and families living with adolescents with HFA.
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Understanding high functioning autism during adolescence:
A personal construct theory approach
3.2 Introduction
Adolescence is a time of many maturational changes, including a range of physical,
social, emotional, and cognitive developments, as well as transitions into high school and
increasing expectations, roles, and responsibilities. Adjusting to these changes can result
in vulnerabilities to stress, anxiety, and other emotional issues (Myles & Simpson, 1998).
Adolescents with high-functioning autism (HFA) are not immune to these challenges.
Rather, research suggests that adolescents with HFA may be more susceptible to these
issues than neurotypically developing (NTD) teens (Barnhill & Myles, 2001; Lasgaard,
Nielsen, Eriksen, & Goossens, 2010; Myles & Simpson, 1998; White & Roberson-Nay,
2009). Although some adolescents with HFA move through this period easily, for the
majority, adolescence is a difficult time (Stoddart, 1999; Willey, 2003). For this reason,
understanding the experience of adolescence for individuals with HFA is of high
importance for the individuals themselves, their families, and clinicians (Levy & Perry,
2011).
In this paper, we describe how Personal Construct Theory ([PCT]; Kelly, 1955)
can be used to understand the experience of HFA during adolescence. PCT has previously
been applied to HFA (Procter, 2001) and adolescence (Truneckova & Viney, 2006, 2007,
2012) separately. However, it has not been applied to these subgroups in combination. The
rationale for focusing on adolescents with HFA is the dearth of literature attempting to
understand the experiences of this subgroup grounded in any theoretical approach
(Carrington, Templeton, & Papinczak, 2003; Cridland, Jones, Magee, & Caputi, 2013;
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Layne, Wilgosh, & Sobsey, 1993; Vliem, 2009). This lack of research remains despite the
range of challenges adolescents with HFA face.
We begin this paper by providing a broad overview of PCT, and then apply some
of the key PCT concepts to understanding adolescents with HFA. More specifically, we
consider (a) functioning within the increasingly complex world of adulthood, (b) identity
development, and (c) development of higher order processing styles (including abstract
thinking and flexible processing). These issues are described using the following PCT
concepts: fragmentation corollary, individuality corollary, organisation corollary,
experience corollary, sociality corollary, and the communality corollary. Throughout the
paper the advantages of understanding adolescents with HFA through the lens of PCT and
central elements of clinician support for both individuals and their families are discussed.
The research in this area is also reviewed and potential areas for future research are
outlined.
The term HFA is used in this paper to refer to all individuals at the high-
functioning end of the autism spectrum. Consequently, the term HFA is used to refer to
individuals who experience the following symptoms: significant social reciprocity
difficulties and behaviours and/or interests that are considered unusual and/or repetitive,
coupled with no significant impairments in cognitive functioning (American Psychiatric
Association, 2013; Jensen & Spannagel, 2011).
3.3 Overview of PCT
PCT derives from the clinical and theoretical work of George Kelly and is a
constructivist approach to understanding human thought and action (Kelly, 1955). It
assumes that objective reality is not directly accessible; rather, each individual actively
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processes or constructs a unique model of her or his world that is based on reality (Fromm,
1995; Steinfeld, 2000).
The central tenet of PCT is that people process and make sense of their world
according to “personal constructs.” Kelly (1955) defined personal constructs as “a way in
which some things are construed as alike and yet different from others” (p. 105). Personal
constructs act as models of a person’s world, guiding perceptions and behaviours, and help
to make sense of their experiences. In describing the nature of personal constructs, Kelly
posited that “man looks at his world through transparent patterns or templates which he
creates and then attempts to fit over the realities of which the world is composed” (p. 7).
Personal constructs refer to all distinctions a person makes, and although we generally
refer to constructs at a verbal level (such as my construct about teachers who are either
“fair” or “unfair”), not all constructs operate at this level.
According to Kelly (1955, 2003), people build up their constructions of the world
by functioning like a naïve scientist. That is, like scientists, people build complex
networks of hierarchically organised theories that they use to help make sense of the
world. If a person’s constructions about a situation do not lead to accurate or helpful
interpretation, then they will be motivated to adjust their constructions to more accurate
theories (Kelly, 1955). This metaphor of “person as naïve scientist” depicts people as
agents who are active in making meaning of a relatively passive world. In this way, Kelly
theorised that people do not react to events but to the way events are construed (Feixas,
Erazo-Caicedo, Harter, & Bach, 2008).
Constructive alternativism posits that there are diverse ways in which people can
construe the world (Kelly, 1955). Such flexibility permits people the freedom to change
their constructions; “…all our present perceptions are open to question and
reconsideration, and…even the most obvious occurrences of everyday life might appear
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utterly transformed if we were inventive enough to construe them differently” (Kelly,
2003, p. 1). The capacity to change ways of viewing the world promotes an optimistic
outlook for individuals with ineffective or maladaptive constructions of the world and is
the basis of therapy in personal construct psychology (Badzinski & Anderson, 2012).
3.4 Adolescence, HFA, and PCT
Kelly (1955) did not directly address developmental periods in his work (Fransella
& Neimeyer, 2005; Vaughn & Pfenninger, 1994). Moreover, Kelly considered people to
be forms in motion who are continually developing throughout life (Fransella &
Neimeyer, 2005; Walker, 2009). Kelly also posited PCT as a “working” theory, with the
aim that it would continually be extended upon and applied to a range of areas and client
groups (Winter, 2013). Here, we apply PCT concepts to better understand adolescents with
ASD.
Increasing complexity of the social realm
A key developmental task of adolescence is adjusting to dramatic changes in social
functioning. Social situations become more complex during this period as adolescents
transition from childhood roles, competencies, and responsibilities into those required
during adulthood (Levesque, 2011). Associated with this increasing complexity are
heightened societal expectations of functioning (Henry, 1994; Levesque, 2011). That is,
social competencies acquired in childhood are no longer sufficient during adolescence.
This increasing complexity of social interactions, coupled with heightened expectations
for social functioning, results in a challenging world for adolescents with HFA (Barnhill &
Myles, 2001; Carrington et al., 2003; Harter, 1999; Henry, 1994; Layne et al., 1993; White
& Roberson-Nay, 2009). More specifically, social deviances, such as unusual eye contact,
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emotional bluntness, self-centredness, and lack of reciprocity, which may be considered
curious or unusual in childhood, are more likely to be viewed negatively in adolescence as
they do not meet the social expectations now required (Barnhill & Myles, 2001).
From a PCT perspective, these social deviances may be understood as attempts to
cope with feeling anxious (Myles & Simpson, 1998; Stanghellini, 2001). According to
PCT, anxiety may be experienced when an individual is attempting to make sense of a
situation that seems alien and uninterpretable within his or her current construct system
(such situations are referred to as “beyond the range of convenience” of the construct
system; Katz, 1984; Kelly, 1955; McCoy, 1977; McWilliams, 1979). In an extension of
Kelly’s original work, McCoy (1977) proposed several emotion-focused PCT concepts,
including the anxiety hypothesis. The anxiety hypothesis states that “a person experiences
anxiety to the extent that he perceives a loss of ability to structure his perceptual field. Or
equivalently, anxiety is the recognition that the events with which one is confronted lie
outside the range of convenience of one’s construct system” (McCoy, 1977, p. 101).
With this interpretation, experiencing anxiety in “unknown” situations is
evolutionarily functional, as these situations may be dangerous (Katz, 1984). Although the
potential for danger in most social situations is generally minimal, it is an individual’s
interpretation of the situation that is of importance in PCT. Given that a central feature of
HFA is difficulty understanding social situations, it is reasonable to assume that
individuals with HFA would interpret social situations as beyond the range of convenience
of their construct systems (thus potentially dangerous), therefore leading to the experience
of anxiety. For adolescents with HFA, the increasing complexity of social situations
increases the likelihood that they will be beyond the range of personal construct systems,
thus leading to an increased likelihood of experiencing anxiety. Truneckova and Viney
(2012) applied this conceptualisation of anxiety in their work with troubled NTD
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adolescents. Additionally, they perceived anxiety as a precondition necessary for
psychological change; that is, it serves as a trigger to facilitate revisions to construction
systems (Truneckova & Viney, 2012).
Individuals with HFA may also perceive social situations as alien (and thus anxiety
evoking) because of their difficulty understanding that other peoples’ experiences of the
world may differ from their own. For example, an individual with HFA may find it
difficult to recognise that others do not hold the same amount of importance in his or her
personal interests as they do. Without this knowledge, individuals with HFA can have
difficulty regulating the amount of information they share with others about topics they are
interested in. Associated with difficulty understanding how other people feel are
challenges in appreciating the ways their own behaviour affects others.
According to PCT, the ability to appreciate that other people’s experiences of the
world may vary from one’s own is a major component of social functioning “…because
only through construing another’s construings can one have a truly social interaction”
(Kelly, 1955, p. 18). The sociality corollary describes this process of relating to and
understanding others. According to PCT, people do this by developing constructions about
how another person may construe the world. In other words, “to the extent that one person
construes the construction processes of another, he may play a role in a social process
involving the other person” (Kelly, 1955, p. 66). Essentially, this ability unlocks the social
world and permits meaningful relationships to develop. Yet it is precisely this skill of role-
taking that individuals with HFA find challenging.
During adolescence, social functioning and “fitting in” attain heightened importance
(Barnhill & Myles, 2001; Levesque, 2011). Adolescents with HFA may become
increasingly aware of their social difficulties, their distinction from peers, and the realm of
peer interpersonal relationships they find challenging (Frith, 1991; Fullerton & Coyne,
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1999; Stoddart, 1999). Such awareness has been associated with various psychological
problems, including internalising difficulties, such as anxiety and depression, and
externalising symptoms, such as aggressive behaviour (Barnhill & Myles, 2001; Levesque,
2011; Levy & Perry, 2011; Myles & Simpson, 1998). As a result, it is not unusual for
adolescents with HFA to become emotionally sensitive, have low self-esteem, and become
easily stressed (Myles & Simpson, 1998). This relationship is likely to be bidirectional.
That is, awareness of inadequate social skills, misinterpretation of social subtleties,
isolation, or expectations of social failure may lead to anxiety or depression (Lasgaard et
al., 2010; White & Roberson-Nay, 2009), and mental health problems may exacerbate
social deficits, which could lead to avoidance of social interactions thereby limiting
opportunities to practise social skills (Stoddart, 1999; White & Roberson-Nay, 2009).
Associated with the increasingly complex social world of adolescence is exposure
to, and participation in, a broader range of social roles. Employee, drivers licence holder,
and partner are examples of some roles commonly adopted during adolescence. The
uptake of a new role requires learning the rules, responsibilities, and social etiquette
associated with each specific role. Adolescents with HFA may find accommodation of
new roles to be confusing as their learning style generally requires “manual learning,”
whereas their NTD counterparts rely more on “social learning” (Chan & John, 2012).
Social learning allows NTD adolescents to form loosely developed constructs about roles
they have observed but not personally been involved in (Chan & John, 2012). For
example, a NTD adolescent would have constructs about the role of a waiter (i.e., take
orders, clean tables, bring out food, handle money). Although adolescents with HFA may
have similar constructs, their ability to apply these constructs to themselves is likely to be
limited as they rely on manual learning of how roles apply to them personally. This
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conceptualisation highlights the importance of manually teaching adolescents with HFA
about the specific tasks a particular social role may involve.
The range of social deficits described above are challenging for family members of
adolescents with HFA, as it can be particularly difficult for them to understand the unique
presentation of HFA exhibited by their family member. Such behaviour may include
inflexible daily routines, lack of spontaneity, unique intolerances, quick mood changes,
and difficulty coping in social interactions (Attwood, 2007; Heiman & Berger, 2008;
Macks & Reeve, 2007; Pakenham, Samios, & Sofronoff, 2005; Procter, 2001; Vliem,
2009). The personal constructivist interpretation offered in this paper may facilitate
understanding as to why their adolescent family member with HFA finds social situations
and relationships difficult. Clinicians may also benefit from understanding such behaviour
according to the PCT lens in their provision of support to families.
Sense-making in complex social situations
Adolescent involvement in the complex social world of adulthood requires efficient
interpretation of multifaceted, complicated social situations. For example, a room where
two conversations are occurring at the same time, a television show is on, and someone is
preparing a meal, is a standard situation interpreted by NTD adults. The interpretation of
such a situation requires simultaneous processing of the various elements that are
subsumed under a broader picture, in addition to the ability to select out and attend to the
most relevant aspects of the situation as a priority (Deruelle, Rondan, Gepner, & Fagot,
2006; Procter, 2001). Such skills in efficiently and coherently synthesising complex
situations are not well suited to the processing style of individuals with HFA (Deruelle et
al., 2006; Procter, 2001). More specifically, research indicates that when individuals with
HFA process complex objects or scenes, they process the various parts (or subordinate
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components) of an item as a priority (Deruelle et al., 2006). This processing style is
different to the NTD controls, who process the overall objects first (superordinate
components) before focusing on the more detailed, subordinate elements (Deruelle et al.,
2006). This latter style of processing is considered more efficient as it permits the “big
picture” to be realised, decreasing opportunity for misinterpretation.
According to a personal constructivist interpretation, the differing processing styles
of NTD individuals and individuals with HFA can be attributed to the organisation of
personal constructs. A personal constructivist framework posits the importance of
hierarchically organised networks of constructs for effective construing. Such hierarchical
organisation of constructions allows us to interpret, understand, and anticipate situations
more easily than if each situation was interpreted by its various, individual components.
To describe the organisation of personal constructs, Kelly (1955) formulated the
organisation corollary. This corollary states: “Each person characteristically evolves, for
his convenience in anticipating events, a construction system embracing ordinal
relationships between constructs” (Kelly, 1955, p. 39). Ordinal relationships between
constructs occur when some constructs become subordinate to, or “under,” other
constructs. For example, a construct about seagulls may be considered subordinate to the
higher order (or superordinate) construct of birds. In this way superordinate constructs are
considered to be more abstract because they incorporate more rules and exceptions to rules
(e.g., penguins are still classified as birds despite the fact that most birds fly) than
subordinate constructs.
Continuing with the example of entering the busy room, the hierarchically organised
constructions utilised by a NTD individual may include consideration of the time of day to
anticipate the program playing on the television, knowledge about body language to
anticipate the types of mood the people are in and importance of what they are saying, and
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past experiences with food to anticipate what meal is being prepared. Conversely, the
construct system of an individual with HFA, dominated by a network of isolated,
subordinate constructs, will require “manual” interpretation of the numerous “separate”
components of the situation from a bottom-up approach.
For adolescents with HFA, development of efficiently organised construct systems
may be even more challenging. First, processing superordinate constructs requires abstract
thinking skills. Abstract thinking skills facilitate problem-solving abilities, regulation of
coping responses, and aptitude to anticipate future events and implications of decisions
(Inhelder & Piaget, 1958). Such abstract thinking skills, or formal operations, are still
developing throughout adolescence and it is not until late adolescence that these skills
become fully developed (Inhelder & Piaget, 1958). Therefore, with the combined effects
of underdeveloped abstract thinking skills, and construct systems less efficiently organised
than those of NTD adolescents, adolescents with HFA are likely to experience difficulties
making sense of complex situations.
Kelly (1955) described that such hierarchical organisation of constructs results from
ongoing revision of constructs through validation and invalidation processes. Validation is
defined as “compatibility between one’s predictions and the outcome he observes” (Kelly,
1955, p. 158), which Kelly contrasts with invalidation, the “incompatibility between one’s
predictions and the outcome he observes” (p. 158). Although Kelly theorised that the
validation–invalidation process occurs through the person-as-scientist process of
interacting with the world (discussed in Overview of PCT), he also recognised that people
may not always engage in the validation cycle effectively. Consequently, people
sometimes retain constructs despite invalidation and vice versa (Kelly, 1955). Kelly
(1955) proposed that this can occur on varying levels from deliberate ignorance to
inadvertent overlooking of facts. In addition, Walker (2002) proposed three conceptual
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aspects involved in the validation cycle: the content of construing, the process of
construing, and the structure of constructs. She posits that errors in the validation–
invalidation process can occur at any of these stages (Walker, 2002). Together, this means
there are various ways that people may not engage in effective validation–invalidation
processes (Walker, 2002; Walker, Oades, Caputi, Stevens, & Crittenden, 2000).
Mason (2008) used repertory grids (a PCT methodology) to measure psychological
change with offenders who have intellectual disability. The repertory grid proved sensitive
to measure the impact of psychological treatment in a client group who often make only
small gains, and flexible enough to effectively measure idiosyncratic changes over
treatment (Mason, 2003, 2008). A key way this was achieved was by showing a general
“loosening of construing” (Kelly, 1955) over time, which, according to PCT, is evidence
of a general increase in readiness to change. This approach may also be efficacious for
working with adolescents with HFA, as it may help others understand the content, process,
and structure of their constructions.
Identity development
Identity development, or forming a sense of self, is a central component of
adolescence. According to PCT, a person’s identity consists predominantly of higher order
constructs called core constructs (Butler, 2006; Kelly, 1955). Kelly (1955) defined core
constructs as those that “govern people’s maintenance processes—that is, those by which
they maintain their identities and existence” (p. 482). Core constructs, like all others, are
understood to be the result of construing and are developed to help us anticipate a
particularly important set of events—ourselves (Kelly, 1955). Core constructs are
considered to be the most complex superordinate constructs in a person’s personal
construct system (Butler, 2006). This complexity arises because core constructs are
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developed and influenced by all other lower order construct systems, meaning the precise
content of core constructs is usually beyond conscious awareness (Butler, 2006).
Individuals with HFA may have difficulty developing superordinate constructs due
to the organisation of their personal construct systems (i.e., minimal use of hierarchical
organisation of constructs). For this reason, Procter (2001) theorised that individuals with
HFA may experience a poor sense of identity. Given that adolescence is a key period of
identity development, it may be assumed that adolescents with HFA will find this period
demanding (Cottenceau et al., 2012).
Another reason contributing to difficulties in identity development for individuals
with HFA is that it is considered to be a largely social process (Levesque, 2011; Neimeyer
& Neimeyer, 1985). More specifically, the social components of identity development
involve exposure, experimentation, and sense making of different social roles (Levesque,
2011). Although the specific content of core constructs is considered to vary from person
to person, socially dependent common factors underlying core constructs have been
theoretically (Rowe, 2003) and empirically (Butler, 2006) proposed. More specifically,
Rowe (2003) proposed the common dimension of core constructs of “self-liking” whereby
a person’s perception of self is developed from the reactions of others. Similarly, Butler
(2006) posited that a common factor of core constructs is “relatedness,” which describes
the ways in which our core constructs are embedded in relationships with others.
In support of the social nature of identity development, Walker (1996) proposed that
implicit and explicit feedback received by other people is critical for identity development.
Family and peers are the two main social groups of people who provide feedback to
adolescents, and identity development requires interaction and feedback from both these
social groups in a particular manner. That is, as adolescents experiment with different
social roles, peers serve as “social stepping stones” for the adolescent to transition from
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complete dependence (physical, emotional, and psychological) upon family toward
autonomous functioning as an adult (Levesque, 2011). The family’s role is to provide a
secure support base during this role experimentation. Given that identity development is a
highly social process, and that the social world can be challenging for individuals with
HFA, identity development is likely to be a challenging process for adolescents with HFA
(Artar, 2007; Henry, 1994; Willey, 2003; Ybrant, 2008).
Another factor that contributes to the challenging nature of identity development is
experiencing conflict between the various roles the adolescent is attempting to assimilate.
Some roles may be seemingly incompatible with, or even in opposition to, other roles. For
example, most adolescents experience a degree of tension between their role as a
dependent child and as an emerging, independent adult. If these different roles remain
separate they are unlikely to create conflict for the individual. However, the roles may
become conflicting if they increasingly interfere with each other. In PCT, the
fragmentation corollary acknowledges that people can be, and in fact often are,
inconsistent within themselves. In explaining this corollary, Kelly (1955) wrote, “a person
may successively employ a variety of construction subsystems which are inferentially
incompatible with each other” (p. 58). During adolescence, the issue of multiple,
fragmented selves becomes more prominent than during childhood due to an expansion of
roles and the increasing complexity of newly adopted roles, both of which heighten
opportunity for incompatibilities to surface.
The issue of identity development and sense making of fragmented selves has not
been examined with adolescents with HFA (Bagatell, 2007; Stocker, 2001). Such
approaches, however, are emerging in related fields. For example, Thomas, Butler, Hare,
and Green (2011) utilised personal constructivist approaches to explore self-image and
identity construction in adolescents with learning disability. Findings indicated these
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adolescents construed their self-image hierarchically using psychological constructs over
nine different dimensions of self. It remains unclear whether adolescents with HFA have
similar multifaceted, hierarchically organised constructions of self or how they perceive
the experience of having fragmented, sometimes contradictory, selves. This research gap
remains despite this developmental issue being highly relevant to this subgroup.
Individuation of the self develops as a result of adolescent identity formation
(Erikson, 1982) and involves development of a strong recognition of one’s uniqueness,
authenticity, and personal moral and ethical values (Levesque, 2011). These complexities
develop in the adolescent from a dynamic interplay of personalised past experiences,
opinions, attitudes, and predictions of the future. In PCT, the individuality corollary
acknowledges that each individual is unique due to his or her personal construction of
reality. Kelly (1955) theorised that people each have individualised constructions because
their interpretations of current situations are influenced by their unique past experiences.
The importance of individuality may be particularly relevant to adolescents with HFA
given both the complex nature of the condition and the complex nature of adolescent
development.
Coupled with the sense of individuality is the importance of recognising the
commonalities these individuals have with all other people (Procter, 2001). In PCT, this
concept is described in the commonality corollary, which acknowledges that, in addition
to a person’s individualised way of perceiving the world, they also share common
constructs with others. This corollary states that “to the extent that one person employs a
construction of experience which is similar to that employed by another, his psychological
processes are similar to the other person” (Kelly, 1955, p. 63). Essentially this corollary
reminds us that despite the different way individuals with HFA perceive and experience
the world, they have the same desire for acceptance as everybody else.
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Recognising this commonality is critical during potentially challenging periods such
as adolescence. Simultaneously, recognising that every adolescent with HFA has a unique
way of making sense of the world may allow family members and clinicians to be more
understanding of these individuals. Hare and colleagues (Hare, 1997; Hare, Searson, &
Knowles, 2011) applied PCT methodologies when working with adolescents and adults
with intellectual disability. Their work demonstrated how PCT-based approaches
effectively capture the rich and idiosyncratic ways individuals with intellectual disability
make sense of their world in a nonthreatening, person-centred way (Hare, 1997; Hare et
al., 2011). Such approaches are likely to also be efficacious when working with
adolescents with HFA, and their families.
Developing flexible processing styles
Sense-making of an increasingly complex social world is a critical task during
adolescent development. A facilitating factor for processing complex, social information is
flexible, reflexive processing. This style of processing allows for reflection, revision, and
elaboration of constructions through validation and invalidation of the construal process.
Kelly (1955) considered such “trial and error” learning as central to the development of
coherent personal constructs and described it in PCT via the experience corollary. This
corollary posits that “a person’s construction system varies as he successively construes
the replication of events” (Kelly, 1955, p. 50). For example, if the garbage is collected
every Monday morning we expect it to continue to be collected on Monday mornings.
Importantly, when things do not happen the way they have in the past, we learn to adapt or
re-construe the situation. In this way, constructs are continually revised and elaborated.
Therefore, new experiences alter our future anticipations. Continuing with the
example, if one day the garbage is not collected until midday we learn that the garbage is
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usually collected on Monday mornings but sometimes it is collected later in the day. Kelly
(1955) considered it was the succession of events over time that continually subjects a
person’s construction system to a validation process:
“The constructions one places upon events are working hypotheses, which are
about to be put to the test of experience. As one’s anticipations or hypotheses
are successively revised in the light of the unfolding sequence of events, the
construction system undergoes a progressive evolution.” (p. 51)
This style of reflexive processing is likely to be difficult for adolescents with HFA.
A central characteristic of HFA is a tendency for rigid thought processing styles.
Individuals, including adolescents with HFA, can become upset when situations do not
follow preconceived constructions. For example, having lunch inside rather than outside
the classroom because of rainy weather may invalidate their constructions about lunch at
school. This process of making sense of new or varied situations can be very upsetting to
individuals with HFA due to inflexibility in re-construing. For an adolescent with HFA,
the potential to experience distress due to invalidation of constructions may be increased
due to the variety of new situations that they are exposed to during this period. For
example, the transition from primary school into high school requires exposure to a variety
of new situations. Whereas NTD adolescents generally assimilate such changes into their
constructions of school, an adolescent with HFA may find this adaptation more
challenging.
Expecting events to occur in the same way in the future as in the past is not
considered to be unhealthy from a personal constructivist position. Moreover, Kelly
(1955) considered this anticipation through replication to be in line with the rational nature
of people. He also considered such anticipation to help protect people from the uncertainty
of the future. Yet importantly, Kelly highlighted the value of balancing anticipation of
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replication with a flexibility in expectations, since retaining constructions in spite of
invalidation is considered maladaptive. In this way, rigid thought processing styles that
retain constructs despite invalidation are considered to be less efficient than flexible,
reflexive processing styles because the individual may uphold constructs that have not
evolved through the validation and invalidation processes.
Individuals with HFA may be particularly prone to retaining invalidated constructs
as a result of their rigid processing styles. To illustrate, consider the tendency of an
individual with HFA to adhere to self-imposed strict rules, and uphold expectations that
other people will adhere to these rules as well. For example, an individual with HFA may
learn the “rule” that if you tell someone “thank you,” he or she will respond with “you’re
welcome,” and expect that this sequence will be followed in every circumstance. This
individual may become distressed if someone does not respond, or responds differently,
when he or she expresses gratitude. Using a PCT framework, such rule-governed
behaviour can be accounted for in an understanding and empathetic way. First, strict
adherence to “one-size-fits-all” rules may be the result of relying on subordinate
constructs, rather than superordinate constructs that more easily permit “exceptions to the
rule.” Second, strict adherence to rules, and the associated preference for routine,
familiarity, and order, may be understood as an attempt to reduce uncertainty in the future
(which is anxiety provoking).
Another reason for the increased rigidity exhibited during adolescence by some
individuals with HFA is their tendency to develop negative attribution styles (Barnhill &
Myles, 2001). Adolescents with HFA often have a tendency to attribute errors (such as
misunderstandings in social situations) to some stable, internal inadequacy (Barnhill &
Myles, 2001). This way of thinking is in comparison to a more functional attribution style
that would be to attribute errors to an external factor or to reframe a challenging situation
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as a learning opportunity. Further, adolescents with HFA are more likely to generalise
negatively beyond a current situation and perceive that they are unable to master a
situation rather than make adjustments to their construing of the situation (Barnhill &
Myles, 2001). This tendency to internalise, rather than externalise, blame further accounts
for why adolescents with HFA tend to be self-critical and have low self-esteem concerning
social situations (Myles & Simpson, 1998).
Understanding these negative attribution styles according to PCT may foster more
empathetic understandings of adolescents with HFA as it interprets such behaviour as
coping mechanisms rather than inflexibility. Further, given the increasingly complex, and
therefore anxiety-provoking, world of adolescence, it is understandable that these
behaviours sometimes increase in frequency or intensity during this period. It is important
for family members and clinicians to keep an open mind when considering individuals
with HFA. For example, Hare and colleagues (Hare, 1997; Hare et al., 2011) used PCT
methodologies to explore the reasons behind “negative” behaviour exhibited by
individuals with intellectual disability. The outcome of this work helped families and
clinicians take the perspective of the individual and understand the complex reasons for
the behaviour, where they had previously attributed it solely to the individuals’
“diagnoses” (Hare, 1997; Hare et al., 2011). Similarly, the application of PCT approaches
for adolescents with HFA will help family members and clinicians understand the
individual as a whole rather than based solely on their disability.
3.5 Supporting adolescents with HFA and their families
Helping adolescents with HFA learn about their condition through the lens of PCT
concepts may result in greater awareness of variations in the way people experience the
world (Carrington et al., 2003; Procter, 2001; Stoddart, 1999). Such awareness is likely to
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be particularly beneficial during adolescence due the heightened importance of social
functioning and the vulnerabilities often associated with adolescence. Helping families of
adolescents with HFA understand the condition according to PCT concepts may increase
their understanding of their family member. Understanding and acceptance from family
members is likely to protect the adolescent with HFA from the often harsh world of
adolescence and help them embrace the fact that they are different not defective.
The provision of clinical support services to individuals with HFA is essential, and
of particular importance during adolescence (Carrington et al., 2003; Layne et al., 1993;
Myers & Johnson, 2007). Central elements of clinician support for adolescents with HFA
involve helping make sense of one’s thoughts, feelings, and perceptions; facilitating
awareness of the impact of one’s behaviours on others; providing support during unique
life-stage issues (such as identity development issues); and attempting to understanding
the individual’s worldview (McGorry, 2007; Stoddart, 1999). In addition, the efficacy of
clinical support services involving whole families living with HFA has been well
documented (Beresford, 1994; Bradford, 2010; Davis & Gavidia-Payne, 2009; Seligman
& Darling, 2007). Family-focused support has been shown to increase wellbeing,
knowledge about HFA, family functioning, resilience, and perceived competence, and to
reduce subjective distress (Bagatell, 2007; Bradford, 2010; Phelps, McCammon,
Wuensch, & Golden, 2009; Seligman & Darling, 2007). The use of family-focused
support is in line with the call for more research utilising family systems approaches
(Cridland et al., 2013; Jensen & Spannagel, 2011; Seligman & Darling, 2007). Therapists
may also provide informative and emotional support, help the family respond to grief or
confusion, act as role models, and encourage acceptance and even appreciation of having a
family member with HFA (Bagatell, 2007; Beresford, 1994; Bradford, 2010; Seligman &
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Darling, 2007). Support during developmental periods, such as adolescence, may be
particularly important (Layne et al., 1993; Myers & Johnson, 2007).
Further, support utilising a PCT approach is likely to be beneficial both for
adolescents with HFA and for their families. For example, Ijaz and Mahmood (2012) used
repertory grids with adolescents with low reading ability to depict their “mental map” of
family relationships. The method proved a sensitive means of exploring these individuals’
perceptions about psychological closeness and distance of relationships within the family
(Ijaz & Mahmood, 2012). Additionally, Hare and colleagues (Hare, 1997; Hare et al.,
2011) found sharing grids developed by individuals with intellectual disability in a clinical
setting with their families to be highly beneficial. More specifically, they found it
facilitated understanding of the individual’s actions and fostered empathy and tolerance, as
well as understanding the person as a whole rather than based solely on their disability
(Hare, 1997; Hare et al., 2011). The PCT methodology of repertory grids may be
particularly efficacious for individuals, including adolescents, with HFA given their
flexibility within a set structure and reliance on number, order, and sequence (Hare et al.,
1999).
The application of PCT to understanding and working with adolescents with HFA
needs further empirical research. Areas of research may include PCT-orientated
psychotherapy with adolescents with HFA and their families and the application of PCT
methodologies (such as repertory grids) with this group of people. Not only will such
research validate the use of PCT approaches with adolescents with HFA, but also help
advance our understanding of HFA in general.
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3.6 Conclusion
This paper provides preliminary steps toward the application of concepts from PCT
toward understanding the experience of HFA during adolescence. In applying these
concepts to adolescents with HFA, we considered several developmental tasks associated
with adolescence, including (a) functioning within the increasingly complex world of
adulthood, (b) identity development, and (c) development of higher order processing
styles. We propose that PCT provides an eloquent and in-depth account of developmental
issues for adolescents with HFA. However, there are a range of other developmental tasks
inherent to adolescence that would be worthy of consideration according to PCT, such as
involvement in intimate relationships and individuation from the family.
Understanding adolescents with HFA within a personal constructivist framework
may be helpful for adolescents with HFA themselves, their family members, and
clinicians. It may facilitate greater awareness of the ways in which their behaviour
influences others, the ways that other people’s experiences vary from their own, and
reasons why they may find social situations challenging. This understanding may
encourage increased self-acceptance, which is critical (although often lacking) during
adolescence. Understanding HFA according to PCT concepts may help families
acknowledge the challenges their adolescent family member faces in areas such as the
social realm and identity development. With this understanding, family members may be
better equipped to provide safe and accepting home environments. It may also help family
members to understand and manage some of the behaviours and reactions exhibited from
adolescents with HFA, such as increased rigidity in thinking, anxiety, or social
withdrawal. Further, understanding HFA through a personal constructivist framework may
help family members become aware of the commonalities between themselves and their
family member with HFA. For clinicians, understanding adolescent clients with HFA
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through personal constructivism may help their attempts to understand the individual’s
worldview and from there develop appropriate intervention strategies (Truneckova &
Viney, 2006).
Essentially, adolescents with HFA remain authentic individuals with the right to be
acknowledged, understood, and respected (Procter, 2001). The authors propose PCT as
efficacious in doing justice to the complexity of this condition during the particularly
challenging period of adolescence. Understanding these individuals according to PCT
approaches may help family members and clinicians to recognise that adolescents with
HFA may differ in their constructions of their world, themselves, and others (Truneckova
& Viney, 2012). Further, it may facilitate sensitivity to the possible ways in which these
differences in meaning-making may affect individuals’ mental health and wellbeing.
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presented at the XV11th International congress on Personal Construct Psychology,
Venice, Italy.
Walker, B.M., Oades, L.G., Caputi, P., Stevens, C.D., & Crittenden, N. (2000). Going
beyond the scientist metaphor: From validation to experience cycles. In J.W. Scheer
(ed.), The Person in Society: Challenges to a Constructivist Theory (pp. 100–113).
Giessen: Psychosozial-Verlag.
White, S.W., & Roberson-Nay, R. (2009). Anxiety, social deficits, and loneliness in youth
with autism spectrum disorders. Journal of Autism and Developmental Disorders,
39, 1006–1013.
Willey, L.H. (2003). Asperger Syndrome in Adolescence: Living with the Ups, the Downs
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Ybrant, H. (2008). The relation between self-concept and social functioning in
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CHAPTER 4: THE PERCEPTIONS AND EXPERIENCES OF ADOLESCENT
BOYS WITH AUTISM SPECTRUM DISORDER: A PERSONAL CONSTRUCT
PSYCHOLOGY AND FAMILY SYSTEMS PERSPECTIVE.
Cridland, E.K., Caputi, P., Jones, S.C., & Magee, C.A., (accepted August 2014). The
perceptions and experiences of adolescent boys with autism spectrum disorder: A
personal construct psychology and family systems perspective. Journal of
Intellectual and Developmental Disabilities.
4.1 Abstract
Background: This study applies Personal Construct Psychology for
understanding the experiences of adolescents with Autism Spectrum
Disorder (ASD). Method: Semi-structured interviews were conducted with
26 participants from eight families, including adolescent males with ASD,
mothers, fathers, and adolescent neurotypically developing siblings.
Analysis of interview data was structured according to themes presented in
previous theoretical application of Personal Construct Theory (PCT) for
understanding adolescents with ASD. Results: Themes included complexity
of the adolescent social realm, sense-making in multifaceted situations,
identity development, development of flexible processing styles, and
understanding and managing physical and emotional changes associated
with puberty. Conclusions: The study provides support for the application of
PCT for understanding adolescents with ASD. The insights provided by the
participants may be helpful for adolescents with ASD, family members, and
clinicians.
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The perceptions and experiences of adolescent boys with an autism spectrum disorder:
A personal construct psychology and family systems perspective
4.2 Introduction
Adolescent development involves a range of physical, social, emotional, and
cognitive changes (Levesque, 2011). Transitioning to secondary school is another
significant change for adolescents involving management of complex routines, increased
student population, increased academic workload and expectations, more varied and
complex subjects and assignments, and exposure to a greater number of teachers (Adreon
& Stella, 2001; Carrington & Graham, 2001; Poon et al., 2012). Adjusting to these broad
ranging changes can result in vulnerability to stress, anxiety, and other emotional issues for
many adolescents (Myles & Simpson, 2003).
A subgroup of adolescents reported to be particularly vulnerable to the negative
effects of these developmental changes are those with Autism Spectrum Disorder (ASD)
(Barnhill & Myles, 2001; Lasgaard, Nielsen, Eriksen, & Goossens, 2010; White &
Roberson-Nay, 2009). Individuals with ASD experience persistent and significant social
communicative impairments, as well as restricted and repetitive behaviours and/or interests
(American Psychiatric Association [APA], 2013). Whilst several studies report that some
individuals with ASD experience improvements during adolescence (in areas such as
communication, social interaction, restrictive and repetitive behaviours, and daily living
skills) (McGovern & Sigman, 2005; Smith, Maenner, & Seltzer, 2012), other research
indicates that many adolescents with ASD experience symptom deterioration in areas such
as frequency and intensity of sensory abnormalities, compulsions, self-injurious behaviour
and aggression, cognitive rigidity, and inappropriate sexualised behaviour (Kring,
Greenberg, & Seltzer, 2009; Levy & Perry, 2011; Seltzer, Shattuck, Abbeduto, &
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Greenberg, 2004). For this reason, understanding the experience of adolescence for
individuals with ASD is of high importance for the individuals themselves, their families,
and clinicians (Levy & Perry, 2011).
Personal Construct Theory
In this study, we apply Personal Construct Psychology (Kelly, 1955, 1966) for
understanding the experiences of adolescents with ASD. Personal Construct Theory (PCT)
is a constructivist approach to understanding human thought and action, derived from the
clinical and theoretical work of George Kelly (1955). Personal Construct Theory is
grounded in the assumption that individuals construct a subjective model of their world
based on reality (Kelly, 1955, 1966). Referred to as ‘personal constructs’, these
individualised models of reality guide the way people process and interpret their world.
Personal constructions are considered to develop over time from both direct and
anticipated experiences and interactions (Kelly, 1955, 1966). Moreover, a personal
constructivist framework posits that individuals develop hierarchically organised networks
of constructs. Such hierarchical organisation of constructions allows us to interpret,
understand, and anticipate situations more easily than if each situation was interpreted by
its various, individual (lower-order or subordinate) constructs.
As construct systems are developed from personal experiences, there are diverse
ways in which people can construe the world (Kelly, 1955). Coupled with this perspective,
however, is recognition that people with mutual experiences, such as members of a family,
often develop some shared constructs (Procter, 2001). Constructive alternativism also
recognises that individuals have the capacity to change their constructions through
reconstruing processes. This capacity to change ways of viewing the world promotes an
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optimistic outlook for individuals who hold ineffective or maladaptive constructions and is
the basis of PCT grounded therapy (Badzinski & Anderson, 2012).
The benefits of utilising a PCT framework with this population include eloquent
explanations about the construing processes of individuals with ASD (Cridland, Caputi,
Jones, & Magee, 2013a; Procter, 2000). From this, understanding the experiences of
adolescents with ASD within a personal constructivist framework may be helpful for
family members and clinicians to recognise that adolescents with ASD may differ in their
constructions of their world, themselves, and others (Cridland et al, 2013a; Truneckova &
Viney, 2012). Further, it may facilitate sensitivity to the possible ways in which these
constructions may affect individuals’ mental health and wellbeing (Cridland et al, 2013a).
The application of PCT for understanding the experiences of adolescents with ASD
was previously outlined by Cridland et al (2013a). The aforementioned paper considered
various adolescent development tasks using a PCT framework, including, functioning
within the increasingly complex world of adulthood; sense-making in complex situations;
identity development; and development of flexible processing styles. Cridland et al
(2013a) discussed the advantages of understanding adolescents with ASD through the lens
of PCT, however, it also highlighted the need for empirical research to validate the
application of PCT to this subgroup of individuals. The present study aims to address this
recommendation and extend on the areas to which PCT was theoretically applied.
4.3 Aims
The overarching aim of this study was to understand the perceptions and experiences
of adolescents with ASD from a personal construct psychology perspective 4 . Qualitative
4 The research aims are elaborated in Appendix V, Section 1.
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data collection methods and analyses were used to gain detailed perspectives of the lived
experiences of adolescents with ASD and their families.
Based on existing literature and the first author’s clinical experience, it was
hypothesised that the issues highlighted in previous application of PCT for understanding
adolescents with ASD (see Table 4.2) would be relevant to the issues discussed by
adolescents with ASD and their families. The nature of additional issues raised by
participants pertinent to their experience of being an adolescent/having an adolescent
family member with ASD was unknown.
4.4 Method
Sample
The sample consisted of 26 participants from eight families. Specifically, the sample
included mothers (n=8), fathers (n=7), adolescent neurotypically developing (NTD)
siblings (n=4), and adolescents with ASD 5 (n=7). Eligibility criteria for the families
included having two parents who identify as the primary caregivers with at least two
adolescent children (one NTD individual 6 and one son with ASD
7 ); all family members
living at home a minimum of 5 days per week; only one family member formally
diagnosed with an ASD; and all family members having knowledge of the ASD diagnosis.
Additional sample demographic information is presented in Table 4.1. The rationale for
focusing on adolescent males with ASD was based on the current predominance of males
5 All participants with ASD were formally diagnosed with Asperger’s Syndrome (AS),
which according to the DSM-IV (APA, 2000), is a high functioning form of ASD. The
term ASD rather than AS is used throughout the paper in order to be consistent with the
DSM-V (APA, 2013). However, terms associated with AS (e.g., Asperger’s, Aspie) have
been retained in direct quotations from participants in order to accurately portray their
comments. 6 The NTD individuals could be either male or female
7 From hereon, the male adolescent participants with ASD will be referred to as
‘adolescents’ and the NTD adolescent siblings as ‘siblings’/‘brother’/‘sister’.
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diagnosed with ASD (Holtmann, Bölte, & Poustka, 2007; Krahn & Fenton, 2012) and
previous recommendations to acknowledge the influence of gender on research findings
(Card, Stucky, Sawalani, & Little, 2008; Cridland, Jones, Caputi, & Magee, 2014a; Hsiao,
Tseng, Huang, & Gau, 2013).
9 2
Table 4.1: Demographic information
Family
identifier
Participating family members Adolescent
age
Adolescent
school level
Sibling gender
(age)
Estimated annual
household income Mother Father Adolescent Sibling
Family 1 Yes Yes Yes Yes 13 Year 8
mainstream
school
Female
(12)
$80000
Family 2 Yes Yes Yes Yes 14 Year 8
mainstream
school
Male
(17)
>$100000
Family 3 Yes Yes Yes No 16 Year 10
mainstream
school
Male
(18)
$80000
Family 4 Yes No Yes Yes 13 Year 7
mainstream
school with
ASD unit
Female
(16)
$40000
Family 5 Yes Yes Yes Yes 15 Year 9
mainstream
school with
ASD unit
Female
(17)
$60000
Family 6 Yes Yes Yes No 12 Year 7
mainstream
school
Male
(19)
$90000
Family 7 Yes Yes Yes No 15 Year 9
mainstream
school
Female
(16)
$50000
Family 8 Yes Yes No No 14 Year 8
mainstream
school
Male
(12)
$70000
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Procedure
Ethical approval was granted by the University’s Human Research Ethics Committee
(see Appendix L) prior to commencing the participant recruitment process. Research aims
were explained by a participant information sheet (see Appendix M) and an introductory
meeting with the first author. Following ethical standards for research with children, written
consent was obtained from the participants and parents (see Appendix N).
An interview guide was developed based on a review of relevant interview guides
(Benderix & Sivberg, 2007; Carrington & Graham, 2001; Mascha & Boucher, 2006; Vliem,
2009) and through multiple discussions amongst the research team. Based on research
recommendations (Cridland, Jones, Caputi, & Magee, 2014b), the interview guide was pilot
tested on one family with an adolescent family member with ASD. Minor wording changes to
questions resulted from pilot testing.
Interview questions were generally related to experiences of being an
adolescent/having a family member with ASD. There was scope for flexibility in topics
discussed as well as follow-up questions to encourage elaboration. A copy of the interview
guide is available from the corresponding author (see Appendix O).
Interviews were conducted based on recommendations outlined in Cridland et al
(2014b) (see Appendix A), including conducting interviews with individual participants in a
private space within the family home (e.g., study or quiet living area); conducting interviews
at a preferred time for participants; and conducting interviews at an appropriate pace to
facilitate accurate interpretation of interview questions. Interviews lasted for an average of
approximately 60 minutes (range 40-150 minutes). Interviews were audio recorded for
transcription.
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Data Analysis
NVivo10 (QSR International, 2012), a qualitative data management program, was
used to manage and analyse the data. Data were initially coded based on the themes
discussed in Cridland et al (2013a), with additional themes generated from remaining
data 8 . A formal measure of inter-rater agreement was not employed. Rather the process
involved one of the co-authors and one independent checker reading all transcripts with the
potential themes identified by the first author. No major changes to the themes identified
by the first author were identified as being necessary by either check. Following the
analysis procedure outlined by Braun and Clarke (2006), a final consultation with the
authors followed to discuss specific theme descriptions and selection of most relevant
quotes.
4.5 Results
Table 4.2 presents the themes and subthemes presented in the current investigation.
Specifically, the first four themes are based on themes presented in Cridland et al (2013a),
with one additional theme, describing the challenges of puberty, emerging from remaining
data.
Direct quotations are presented in indented paragraphs, in which square brackets
([ ]) indicate information added by the authors for clarity and ellipses (...) indicate material
omitted for conciseness. All names have been changed for anonymity.
8 Additional information outlining data analysis procedures including thematic coding procedures and data
integrity and credibility strategies employed are elaborated in Appendix V, Section 2.
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Table 4.2: Thematic codes
Themes presented in Cridland et al (2013a) Themes and subthemes
presented in the current investigation
Increasing complexity of the social realm Increasing complexity of the adolescent social
realm
- Developing and maintaining friendships
- Interacting with girls
- Experiences of bullying
- Limited social opportunities with peers
Sense-making in complex social
situations
Sense-making in complex social situations
- Processing and functioning within
multifaceted situations
- Unique perception of the world
Identity development
Identity development
- Self description
- Impact of ASD on identity
Developing flexible processing styles Developing flexible processing styles
Challenges of puberty
- Understanding and managing physical changes
- Understanding and managing emotions
Increasing complexity of the adolescent social realm.
Developing and maintaining friendships. All participants (n=26/26 described
difficulties that they/their family member experienced developing and maintaining
friendships during adolescence. Reasons for these difficulties included trouble
understanding perspectives of others, difficulty conversing effectively, and challenges
understanding the more subtle and complex functioning of adolescent relationships.
“Their [people with ASD] brain is different so they have to learn how
to read other peoples’ emotions… I can’t read other people…”
(Adolescent, Family 1)
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“…he finds it hard to mix with kids who don’t have ASD… And now
that he’s a teenager he has less friends than in primary. He still has a
few friends but not many close friendships... I think the friendships just
become more complicated.” (Mother, Family 3)
“I know that he has trouble making friends… like making
conversation… I think he likes talking but… when he is around
people, especially when he gets excited, weird things blurt out...”
(Brother, Family 2)
Difficulty discerning between acquaintances and close friendships was another challenge
for the adolescents. More specifically, whilst the majority of adolescents (n=6/7) described
having close friends and/or being part of a friendship group, the majority of family
members (n=15/19) considered these relationships to be acquaintances rather than close
friendships. Interviews indicated that the adolescents’ awareness about these relationship
differences ranged from ignorance to a desire to form closer connections with their peers.
“At school I generally hang around with my mates… We always joke
around… [we] play soccer on the field and sometimes talk…”
(Adolescent, Family 2)
“…he thinks he has got kids at school that he can hang around with
and they are ‘friends’ [but] they are people he hangs around with and
they are not actually there to care about him… I think in general he is
pretty well liked but the other kids don’t really interact with him.”
(Father, Family 2)
“…if you ask him if he has friends he will say yes but… he doesn’t
actually interact with them he just watches them from the side lines…
he thinks that is friendship.” (Mother, Family 7)
Interacting with girls. Some participants discussed the challenges faced by the
adolescents regarding interacting with adolescent girls. Such issues included feeling
uncomfortable talking with girls, and uncertainty regarding the concept of a ‘girlfriend’.
“He doesn’t mix with girls, like when he’s around girls he kind of just
gets a bit bashful and steps back a bit. Like he doesn’t have that kind
of confidence with talking to girls… I think he’s interested… But only
with the girls that are like him, not the other girls in his grade.”
(Sister, Family 5)
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“He struggles with this idea about having a girlfriend. We have been
very lucky because [his brother] has described him some boundaries
[such as] that you probably don’t want a girlfriend before you are 16,
when you chose a girlfriend this is the type of person you look for, this
is how you behave around a girlfriend… But I haven’t quite gotten to
the part about the other person needing to choose you too!” (Mother,
Family 2)
Experiences of bullying. At least one participant from each family described
experiences where their family member with ASD had been bullied as an adolescent.
Various reasons for the bullying were discussed, including the adolescent’s limited
understanding of NTD adolescent behaviour, naivety, and/or social awkwardness.
“He has been bullied a lot… Little things like [someone] tapping a
pen in the class would drive him mad and… of course kids being kids
they would do it more just to annoy him so that would make him
snap… then of course the teacher would send him out.” (Mother,
Family 8)
“…he was getting bullied by this one guy… [who] was saying to him,
‘Give me $10 and I’ll give you an i-phone’ and my brother would
believe it and would give him the money and wouldn’t get anything
from it… he just doesn’t understand that they are lying… I think it
makes him feel vulnerable.” (Sister, Family 4)
Limited social opportunities with peers. The majority of participants (n=17/26)
made reference to the adolescents’ limited involvement in social outings. These
comments were generally made in comparison to the siblings’ social patterns. Reasons
for the limited social outings included minimal invitations from peers, social anxieties,
and difficulties managing social events.
“[NTD teenagers] get out more and do stuff… [I don’t go out much
but] it’s not that I don’t want to do it; it’s that they don’t want me to…
[Also] I don’t like getting out that much but I want to.” (Adolescent,
Family 4)
“I can’t remember the last time he went to a birthday and that was the
sort of thing I was doing at his age…” (Brother, Family 2)
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“A lot of kids don’t want to play with him and they don’t invite him to
birthday parties and they don’t invite him over to their place because
with the behavioural issues it just turns them off.” (Father, Family 6)
Sense-making in complex social situations.
Processing and functioning within multifaceted situations. Family members
discussed various challenges the adolescents faced when processing and functioning within
multifaceted situations. Some of these challenges included processing multiple
instructions, planning steps necessary to complete an activity, and simultaneous processing
of sensory information and body movements to engage in daily activities such as sports or
cooking.
“You can’t give him directions; if you give him more than two things
in an instruction to do, he gets confused… [Also] he really struggles
with school, it’s all too much of a sensory onslaught for him; …the
bells go and kids are running everywhere... [or when the teacher is]
standing in front of the classroom talking, he just gets information
overload and he just can’t absorb it… [Also] he can’t play sport…
everyone gets angry at him because he can’t kick the ball and they get
frustrated at him…” (Mother, Family 7)
“His learning style is very sequential and the pace of learning is a lot
slower… He has a lot of difficulty in seeing clear steps that you take
and manually being able to carry it out and having the dexterity to
carry it out, he gets frustrated with himself because he can’t get things
to work but he doesn’t seem to see the easy way to get it to work…”
(Mother, Family 2)
Ability to focus. Many family members (n=14/19) discussed the adolescents’
ability to intensely focus on topics of interest. The ability to focus on topics of interest was
contrasted with general focusing ability, which was considered to be comparatively poor.
“When he gets into something, he really gets into it. Like if we’re
talking about a book that we have both read he will remember it in
immense detail… I admire that, I really like it. [But it’s] so funny
because he never remembers where his lunch box is or his socks!”
(Mother, Family 1)
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“Some people [with ASD] are focused on one thing… I like to play
computer games and board games. They are my main hobbies and
favourite things to do.” (Adolescent, Family 1)
“He’s incredibly focused on things, whether it is a good thing to be
focused on or not! Like he was incredibly focused on guns and stuff,
which Mum didn’t like so much, but he knew every gun!” (Brother,
Family 2)
The ability to focus intensely also resulted in strong memory skills for topics of interest. In
particular, some family members (n=12/19) commented on the adolescents’ ability to
remember detailed information.
“I like the way he can read a book and remember lots of information
out of it without even really thinking about it... he might not be able to
concentrate on his school work but when he is doing different things
like that, like even watching the History Channel he can concentrate
fully and take it all in.” (Father, Family 7)
“He’s got a good memory, like he can remember things from years
ago that you don’t even know about and even though he is not looking
at you or even in the room he is still listening to what is being around
the surrounding environment and what is going on. He’s a cluey kid.”
(Father, Family 6)
Unique perception of the world. The adolescents’ way of making sense of complex
situations often resulted in a unique way of perceiving the world. In particular, some
family members (n=9/19) discussed their adolescent’s ability to observe the world in its
simplicity.
“His understanding of the world is brilliant… He has this ability to
boil it down to the essence… he will say something really, really
profound and it changes the way you see the world. He is just
amazing.” (Mother, Family 2)
“…just the way he just sees things… He just sees things in their
simplicity really. Nothing is too complicated…” (Father, Family 7)
Identity Development.
Self-description. In order to investigate personality development, the adolescents
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were asked to describe themselves. The majority of adolescents (n=6/7) were able to
provide self-descriptors to varying extents, despite the fact that some were only able to
provide minimal elaboration and/or focused on activities they liked rather than personality
characteristics. Some self-descriptions described core characteristics of ASD, such as
difficulty connecting with people.
“I can be dogged… [and] it takes me a while to connect with people
and I read books a lot.” (Adolescent, Family 1)
“I don’t even know if I even have a personality… I’m not very
describable...” (Adolescent, Family 3)
“I don’t really know if I can describe myself because… That is
difficult… [I am] a smart person and quiet person… those are
actually two traits of my personality… [Another] would be the things I
do like most of the time I’m typing away on my lap top…”
(Adolescent, Family 5)
Difficulties describing identity/personality characteristics were echoed by some family
members (n=3/19).
“I imagine he might have trouble describing himself. He loves gaming
and stuff so whether he would take that as part of [his identity]? He
might say that he is friendly in his own little way… I don’t really
know.” (Mother, Family 7)
When family members were asked to describe their adolescent’s identity/personality,
various participants described ways in which it had developed over time. The
predominant personality characteristics developing during adolescence included self-
confidence, social skills, affectionate nature, and sense-of-humour.
“He’s just lovely… he’s a bit of a joker, which came with age. He
hated dressing up and pretend-play, he hated that as a little boy but he
sort of grew into jokes and stuff.” (Mother, Family 5)
“He is really affectionate and has remained more affectionate at an
older age than Rick [my NTD son] did.” (Mother, Family 2)
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Impact of ASD on identity. The majority of adolescents (n=4/7) conveyed
uncertainty around the ways ASD impacted their identity and/or stated that ASD had no
impact on their sense of self.
“It’s okay that I have AS, otherwise I wouldn’t be who I am, so it’s ok
but it’s not good but it’s also not bad…It doesn’t really matter that I
have AS… It doesn’t really affect me… You are born with AS so I have
always had it and have never had a problem with it… I mean it’s a
brain thing so that is going to make you different, but I don’t know
what ways.” (Adolescent, Family 1)
“I don’t really know what AS does [to me]… It’s not a good thing or a
bad thing, it’s just a thing!... Some people say that I don’t look people
in the eyes when I talk or that I don’t talk really at all, so that might
be something?” (Adolescent, Family 7)
The other adolescents (n=3/7) reflected that having ASD influenced them in both positive
and negative ways. The main positive aspect of having ASD they identified was feeling
special or unique. Negative aspects of having ASD included feeling different and/or
misunderstood, and having social difficulties.
“I actually really like having this disability because it actually makes
me feel a bit special... [but] everyone with AS feels frustrated when
people do not understand them….” (Adolescent, Family 5)
“Sometimes it’s like I’m an alien…. [but] at least I’ve got something
in my life that happens, like at least I’ve got something positive in my
life that will stick with me forever.” (Adolescent, Family 4)
“I don’t mind [having ASD] but I just wish I was more social… [It
would feel] nice for someone to at least comprehend the problems I go
through every day.” (Adolescent, Family 2)
Developing flexible processing styles.
The majority of family members (n=15/19) discussed the adolescents tendency to
have rigid thought processing styles rather than developing flexible processing. Common
areas of rigidity included retaining an opinion despite conflicting evidence, following rules
without exception, difficulty accommodating change, and perfectionism.
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“He gets very fixed on an idea. It can be very frustrating at times but
it can be good at other times… If he has an idea on something… he
will stick to that even if you tell him it is wrong…” (Brother, Family 2)
“[He] thinks he is right all of the time and that is his downfall…He
sort of contradicts everything you say. He’s a real challenger; he will
challenge you on everything.” (Father, Family 6)
Challenges of puberty.
Understanding and managing physical changes. Family members described
various attitudes exhibited by their family member with ASD regarding the physical
changes they were experiencing associated with adolescence. These attitudes ranged from
disgust to confusion to a logical and mature outlook.
“[He didn’t like] being at school for sex education and personal
development and things like that. He was horrified… he was just like,
‘Oh my God! This is gross’.” (Mother, Family 8)
“Curtis didn’t have many questions [about puberty]… he knows all
the factual stuff but I don’t know if he knows the romantic side of it
all. They all are mature like that… it’s all just a body thing… He
didn’t particularly get embarrassed.” (Mother, Family 3)
Difficulty managing the bodily changes associated with puberty was discussed by the
majority of family members (n=14/19). Areas of difficulty included adjusting to the
heightened hygiene routines of adolescence, and understanding appropriate versus
inappropriate public behaviours.
“He also doesn’t always realise when his feet and armpits smell. He
doesn’t pick up on the social things with that.” (Mother, Family 1)
“He’ll just strip off wherever! …And now that he has hit puberty it
has gotten worse… I just constantly tell him that he is developing now
and he can’t do it anymore because he is not a little kid. But he keeps
doing it! It’s scary sometimes.” (Mother, Family 8)
Understanding and managing emotions. All but one family member (n=18/19)
discussed the challenges experienced by adolescents regarding understanding emotions. In
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particular, participants described their adolescent’s difficulty understanding degrees of
negative emotion expressed by others.
“You’ve got to try and not get cranky with him because when you get
cranky with him he actually gets quite upset and really takes it to
heart… he just doesn’t understand the extent of how cranky you are.
Even if you yell because he’s downstairs, so you yell out, ‘Where’s
your clothes?’ He thinks that’s really cranky and upset… he doesn’t
see you as being a little but upset.” (Father, Family 7)
“He gets very moody and thinks I’m cranky at him whenever I say
‘No’… He just doesn’t understand that sometimes I have to say no and
I’m not doing it to be angry or mean, but it’s for a reason.” (Mother,
Family 4)
Management of emotions was considered a challenge for adolescents by all family
members who discussed this issue. These participants indicated the most challenging
emotion to be managed was anger. More specifically, it was identified that the adolescents
struggled with controlling their emotions, and sometimes expressed their emotions in a
socially inappropriate way.
“I get angry easy… A lot of things [make me angry], probably people
saying stuff about me… like, ‘Aw look at that retarded kid’… I usually
just swear at them and sometimes hit them… I know it’s bad.”
(Adolescent, Family 6)
“His anger is a big part of his challenges… He waits until he gets
home, like into a safe environment where he knows he can ‘go-off’…
[He has] trouble controlling his emotions and what’s going on for him
inside”… He’ll get violent if any of us is in his way or trying to help
and he doesn’t want it…” (Sister, Family 4)
4.6 Discussion
This study applied PCT for understanding the experiences of adolescents with
ASD. Analysis of interview data was structured according to themes presented in previous
theoretical application of PCT for understanding adolescents with ASD (Cridland et al,
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2013a). Further consideration of the themes based on a PCT perspective and general
research literature is considered below.
Increasing complexity of the adolescent social realm
Family member interviews indicated that all adolescents had experienced significant
difficulties developing and maintaining friendships with their NTD peers. Such difficulties
included confusion differentiating between friends and acquaintances, difficulties
interacting with girls, experiences of bullying, and having limited social outings with
peers. Many of these difficulties were related to the core social deficits inherent to ASD,
such as difficulties with perspective taking and conversing with others, and/or were
compounded by the increasing complexity of adolescent relationships. Importantly, some
of the perceptions expressed by the adolescents differed from those of their family
members. For example, the majority of adolescents reported having close friends and/or
being part of a friendship group, whilst the majority of family members disagreed. This
disparity may reflect an underestimation of friendship quality by family members or may
reflect the adolescents’ misunderstanding of social interactions.
These findings that adolescents had difficulties interacting with NTD peers is in line
with research which indicates that many adolescents with ASD experience social
difficulties given the increasing complexity of adolescent relationships coupled with the
heightened societal expectations of functioning that occur during adolescence (Adreon &
Stella, 2001; Howard, Cohn, & Orsmond, 2006; Templeton, Papinczak, & Carrington,
2003; White & Roberson-Nay, 2009). These findings also support a PCT perspective, in
which adolescents with ASD find complex social situations challenging, and thus anxiety
provoking, if they do not have well developed constructs about the social situation
(Cridland et al, 2013a; Kelly, 1955; McCoy, 1977). A PCT perspective also posits that
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adolescents’ with ASD have difficulty understanding that other people’s constructs about
the world may differ from their own (i.e., Theory of Mind deficit), which can compound
their social difficulties (Cridland et al, 2013a).
The social isolation reported by the majority of adolescents, resulting from difficulty
developing and maintaining friendships, has also been echoed in the literature. For
example, Müller (2008) found adults with ASD reported that intense and chronic isolation
was a defining feature of their experience of ASD, despite their longing for social
connectedness. Similarly, a diary study tracking how adolescents with ASD spent their free
time indicated these individuals spend relatively more time engaged in solitary activities
compared to their NTD peers due to the unavailability of others’ company rather than
choice (Orsmond & Kuo, 2011). The present findings, along with existing research,
indicate that adolescents with ASD have a strong desire for meaningful peer relationships
and enjoy positive social interactions with peers, but often have difficulty successfully
achieving this (Bauminger, Shulman, & Agam, 2003; Howard et al., 2006; Lasgaard,
Nielsen, Eriksen, & Goossens, 2010; McGuire, 2009; Müller et al., 2008; Orsmond & Kuo,
2011). This suggests it would be important for families and clinicians to facilitate
organisation of social activities for adolescents with ASD.
Peer relationships are of increased importance during adolescence and protective
against mental health issues such as depression and anxiety (Pinkerton & Dolan, 2007;
Schuntermann, 2007). Conversely, difficulties experienced with peer relationships, and the
social isolation often associated with this, can contribute to and/or exacerbate mental
health problems (Barnhill & Myles, 2001; Koning & Magill-Evans, 2001; Müller et al.,
2008). Given the difficulties adolescents with ASD have in developing and maintaining
friendships, they are particularly vulnerable for experiencing emotional problems. For
example, research indicates that levels of co-morbid mental health issues in adolescents
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with ASD may be as high as 81% (Barnhill & Myles, 2001; Lasgaard et al., 2010; Levy &
Perry, 2011; White & Roberson-Nay, 2009).
Sense making in complex situations
The adolescents in this study experienced various challenges processing and
functioning within multifaceted situations. Such challenges included difficulties processing
instructions and planning steps needed to enable them to undertake daily tasks, and difficulty
co-ordinating bodily movements with sensory input needed for daily tasks typically expected
of adolescents. Importantly, the reporting of these difficulties was from family members,
rather than the adolescents themselves. This may indicate the adolescents did not perceive
they had difficulty interpreting complex situations. Alternatively, the adolescents may have
had difficulty expressing these difficulties and therefore chose not to discuss these issues.
Another reason why they may not have discussed difficulties making sense of complex social
situations is that they were not explicitly asked about such issues.
Utilising a personal constructivist position, these difficulties can be attributed to the
processing style of adolescents with ASD. That is, adolescents with ASD may underutilise
hierarchically organised construct systems leading to construct systems dominated by
isolated, subordinate constructs that require ‘manual’ interpretation of the numerous
‘separate’ components of the situation (Cridland et al, 2013a). The drawback of such
processing is that the ‘big picture’ of a situation may not be realised; increasing opportunity
for misinterpretation and placing greater cognitive demand on the individual. This processing
style, coupled with underdeveloped abstract thinking skills, accounts for the difficulties
adolescents with ASD experience making sense of complex situations.
Discussion of the adolescents’ ability to focus and remember immense detail about
topics of interest, and comparatively poor ability to focus on other everyday tasks, can be
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taken as evidence for their underutilisation of hierarchically organised constructs.
Additionally, discussion about the adolescents’ unique way of perceiving the world,
especially in regards to their ability to ‘boil a situation down to its essence’, may be
considered evidence of a ‘subordinate processing’ style. Whilst some participants recognised
positive aspects of this style of processing (e.g., ability to focus, memory for detail, unique
perception of the world), drawbacks were also acknowledged (i.e., difficulty processing
complex situations, poor general memory, and difficulty focusing on meaningful aspects of a
situation).
Identity development
Identity development, or forming a sense of self, is a central component of adolescence
(Artar, 2007). According to PCT, a person forms a sense of identity with the development of
highly complex constructs, referred to as core constructs (Butler, 2006; Kelly, 1955). Given
the reliance of individuals with ASD on subordinate constructs, it has been theorised that
adolescents with ASD may experience a poorly developed sense of identity (Cottenceau et
al., 2012; Cridland et al, 2013a; Procter, 2001).
Additionally, identity development is considered a largely social process as it involves
interpretation of implicit and explicit feedback from others (Artar, 2007; Butler, 2006; Rowe,
2003; Walker, 1996; Willey, 2003; Ybrant, 2008), which adolescents with ASD typically find
difficult. Together, these factors have resulted in the prediction that adolescents with ASD
will have difficulty developing a sense of identity (Cottenceau et al., 2012; Cridland et al,
2013a; Procter, 2001).
The results of the current investigation both substantiate and contradict the hypothesis
that adolescents with ASD have a poorly developed sense of identity. First, the majority of
adolescents showed evidence of a developing sense of self, as they were able to provide self-
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descriptions. However, some adolescents provided basic self-descriptions and/or described
their hobbies or interests rather than their identity. Further, several family members predicted
that the adolescents would have difficulty describing themselves. Together, these findings
suggest some of the adolescents may experience difficulty developing a sense of identity.
Regarding the social process of identity development, some comments from the
adolescents indicated reflection on feedback from others (e.g., ‘Some people say I don’t look
people in the eyes when I talk…’). However, it remains unclear the extent to which this
feedback impacted on their sense of self. The nature of identity development in adolescents
with ASD needs to be further investigated (Cridland et al, 2013a; Pakenham, Sofronoff, &
Samios, 2004).
The adolescents were also asked to discuss the impact of ASD on their identity. The
majority of adolescents were unaware or unsure of the influence of ASD on their sense of
self. However, some described core characteristics of ASD in their self-descriptions (e.g.,
difficulty connecting with people), as did various various family members (e.g., genuine and
affectionate nature, and resistant to change). Denial that ASD had any impact on their identity
may also be associated with uncertainty about the nature of ASD itself.
Among those adolescents who did acknowledge an impact of ASD, both positive and
negative impacts were discussed. This finding is consistent with previous research which
found adolescents with ASD described both positive and negative aspects of their condition,
with many expressing both views (Poon et al., 2012). Common to both the positive and
negative influences of ASD was a sense of feeling different; with some adolescents
construing this as being unique or special, and others construing this as feeling isolated and
misunderstood. The adolescents’ sense of feeling ‘different’ is echoed in the literature, as
research indicates that adolescents with ASD can become increasingly aware of their social
difficulties, their trouble ‘fitting in’, and their general distinction from peers (Fullerton &
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Coyne, 1999; Stoddart, 1999). Such awareness has been associated with mental health issues,
including depression and anxiety, and externalising behaviour, including aggression (Barnhill
& Myles, 2001; Levesque, 2011; Myles & Simpson, 2003).
Developing flexible processing styles
The current findings indicated the majority of adolescents utilised rigid thought
processing styles rather than more flexible processing. Common areas of rigidity included
retaining an opinion despite conflicting evidence, following rules without exception,
difficulty accommodating change, and perfectionism. As with sense making of complex
situations, the difficulties experienced by the adolescents were reported by family members
rather than the adolescents themselves. Reasons for this lack of discussion may include
minimal awareness of their rigid processing styles, difficulty expressing their challenges with
flexible processing, and/or may be reflective of the interview guide which did not ask directly
about processing styles.
From a PCT perspective, rigid thought processing styles inhibit reflection, revision, and
elaboration of personal constructs (Kelly, 1955). During adolescence, inflexible processing
may be particularly ineffective given the increased variety of new and complex situations
individuals are exposed to, such as high school, and the physical and emotional changes
associated with puberty (Cridland et al, 2013a). Along with increasingly complex social
interactions and expectations for functioning, adolescents with ASD are vulnerable to finding
everyday situations challenging. This was evident throughout the interviews. Understanding
the reasons why adolescents with ASD have rigid processing styles, within a PCT
framework, may foster more empathetic and understanding attitudes.
Co-morbid mental health issues can also influence the cognitive functioning of
adolescents with ASD. Research indicates areas of particular vulnerability include cognitive
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flexibility, perspective taking, and abstract thinking (Barnhill & Myles, 2001). Given the
susceptibility of adolescents with ASD to mental health issues, and their cognitive processing
styles, their experience of adolescence as challenging comes as no surprise.
Challenges of puberty
Participants described a range of physical and emotional changes experienced by the
adolescents. Whilst these changes may be considered common to all adolescents (e.g., growth
spurts, sexual development, need for increased hygiene routines, emotional sensitivity,
management of strong emotions) (Levesque, 2011), of particular interest here was the
adolescents’ understanding and management of the changes. The adolescents’ perceptions
about puberty varied from confusion to disgust to a mature level of understanding. Regarding
management of pubescent changes, responses ranged from ignorance to curiosity to feeling
overwhelmed.
From a PCT perspective, the varying perceptions about puberty may be reflective of the
individuals’ different construct systems; with negative perceptions reflective of negative
constructions about pubertal changes. Alternatively, the differing perception may be
understood as a reflection of differing degrees of construct elaboration. That is, individuals
with well-developed constructs about pubertal changes may be more likely to have a mature
response to adolescent development as opposed to those with poorly developed constructs
about puberty. For parents and clinicians, this means adolescents with ASD may adjust more
easily to developmental changes with greater knowledge about puberty.
Many family members discussed their adolescent family members’ difficulties in
recognising degrees of emotion, especially anger, expressed by others as a key challenge
during this period. Interestingly, none of the adolescents discussed this reported difficulty as
a challenge for them, which may indicate their minimal awareness of their troubles
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identifying negative emotions. Research in this area supports these findings, as it indicates
individuals with ASD process negative facial expressions differently, and less efficiently,
than NTD controls (Farran, Branson, & King, 2011; Isomura, Ogawa, Yamada, Shibasaki, &
Masataka, 2014; Pelphrey, Sasson, Reznick, Paul, Goldman, & Piven, 2002). Such
processing differences have been understood to reflect the deficits in facial affect recognition,
particularly of negative expressions, evident in some individuals with ASD (Farren et al.,
2011; Pelphrey et al., 2002). According to a personal constructivist interpretation, the
differing processing styles of NTD individuals and individuals with HFA can be attributed to
the organisation of personal constructs, as discussed previously.
In addition to difficulties identifying and understanding emotions expressed by others,
participants discussed the adolescents’ difficulties managing their experiences of anger.
Although not inherent to the condition, anger is a clinically significant issue for many
individuals with ASD and their families, with research indicating it is particularly
problematic for adolescent males with ASD (Hodgetts, Nicholas, & Zwaigenbaum, 2013;
Kane & Mazurek, 2011; Mazurek, Kanne, & Woodka, 2013). For example, two large-scale
studies investigating the experiences of anger in children and adolescents with ASD have
found over half display significant physical aggression (Kane & Mazurek, 2011; Mazurek et
al., 2013). Whilst the predictors of anger in individuals with ASD are not well understood, it
has been suggested it may stem from the frustration of feeling different and isolated from
their peers (Barnhill & Myles, 2001; Levesque, 2011; Nasir & Tahir, 2012), their difficulties
with communication (Simpson & Myles, 1998), and from coping with a range of often co-
occurring challenges such as sleep problems and sensory abnormalities (Mazurek et al.,
2013). Aggressive behavior can also limit access to treatment, and impede social
opportunities and involvement in everyday activities for both the individual and their family
(Hodgetts et al., 2013). Additionally, the implications for family members of adolescents with
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ASD who display physical aggression are serious given the size and strength of these
individuals (Mazurek et al., 2013)
4.7 Strengths and Limitations
A primary strength of this study was utilisation of a PCT framework. The PCT
perspective offered a detailed and helpful view for understanding a range of issues
experienced by the adolescents with ASD and their families. The use of a qualitative
methodology is also a strength of this study, as there is currently a dearth of literature
incorporating the direct perspectives of individuals with ASD and their families (Carrington,
Templeton, & Papinczak, 2003; Cridland et al., 2013b; Fong, Wilgosh, & Sobsey, 1993;
Vliem, 2009).
However, it is necessary to interpret the findings with caution due to the relatively
small and specific sample, as the findings may not be representative of all adolescents with
ASD. The results nevertheless may be reflective of other adolescents’ experiences, especially
as the issues discussed were largely consistent with available literature. Further, these
preliminary findings may be useful for informing further research and clinical interventions.
For example, the nature of identity development in adolescents with ASD, and the most
suitable method of investigating this issue, remains unclear. Further research is recommended
to investigate these, and other, issues raised in this study.
4.8 Clinical recommendations
This investigation raises the need to address a range of social, emotional, cognitive,
and physical issues faced by adolescents with ASD. The following points outline
recommendations for parents, clinicians, and teachers.
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1. Interviews indicated that many of the adolescents would benefit from more
information about ASD. Information may have been provided to these individuals as
children; however, given the range of new issues faced by adolescents, it is necessary
to provide them with age specific information. There are a range of resources targeted
at this age group (e.g., books, DVDs, websites, chat-rooms, and blogs) that
adolescents with ASD and their families may benefit from.
2. Providing adolescents with developmentally appropriate information about puberty is
recommended (Chan & John, 2012; Sullivan & Caterino, 2008). The most efficacious
strategies are likely to be those provided collaboratively between parents, clinicians,
and teachers (Klett & Turan, 2012; Nichols & Blakeley-Smith, 2010; Travers &
Tincani, 2010). Critical information about puberty includes age specific physical and
emotional changes, healthy strategies for expressing emotions and sexuality, and
socially appropriate versus inappropriate behaviour (as well as the rationale underlying
these social ‘rules’) (Klett & Turan, 2012; Tarnai & Wolfe, 2008). The context for
puberty education should also be considered, as some of the adolescents conveyed
embarrassment about having puberty lessons within a general class environment.
3. Clinical support is generally recommended for all individuals with ASD; however it
may be especially important for adolescents and their families, given the range of
challenges inherent to this period (Carrington et al., 2003; McGorry, 2007; Stoddart,
1999). Crucial elements of clinical support include understanding the adolescent’s
worldview, facilitating awareness of the impact of oneself on others, issues of identity
development, and managing day-to-day challenges (Cottenceau et al., 2012; McGorry,
2007; Stoddart, 1999).
Monitoring, and where necessary intervention, for mental health issues is also
imperative for adolescents with ASD (Kim, Szatmari, Bryson, Streiner, & Wilson,
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2000). Early warning signs for anxious or depressive symptomology in adolescents
with ASD may include disorganization, inattentiveness, decreased stress threshold,
fatigue, and disinterest in hobbies and pleasurable activities (Carrington & Graham,
2001).
4. The influence of the school environment on the wellbeing of adolescents with ASD
must not be underestimated. Strategies to promote a positive high school experience
for adolescents with ASD may include the following:
Staged transition from primary to high school with multiple orientation events and
activities (Adreon & Stella, 2001).
Ongoing meetings between teachers and the family to ensure a collaborative
approach to learning (Brewin, Renwick, & Fudge Schormans, 2008).
Teachers who have a general understanding of ASD and how it affects learning, as
well as a detailed understanding about individual students with ASD and their
unique sensitivities and interests.
Suitable classroom support such as preferential seating arrangements,
individualised learning plans, and assistance for assignments and exams (Adreon &
Stella, 2001).
Peer education and coaching programs for increasing peer acceptance and
understanding about ASD (Chan et al., 2009; Cridland et al., 2014a; Humphrey,
2008; Humphrey & Symes, 2010).
5. The present findings indicate that the adolescents’ minimal involvement in social
activities with peers did not equate to a lack of interest. Families would benefit from
facilitating social interactions with both NTD and ASD peers, as both groups satisfy
different social needs; including exposure to normative social interactions and the
need to feel belonging (Bauminger et al., 2003). Interaction with peers is also
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important for identity development (Bauminger, Shulman, & Agam, 2004).
Additionally, families, clinicians, and teachers should be wary of focusing discussions
with adolescents on the difficulties they may have in making friends, as the
adolescents may internalise such statements and limit their attempts to develop
friendships (Lasgaard et al., 2010).
4.9 Conclusion
The present study provides preliminary support for the application of PCT for
understanding adolescents with ASD. More specifically, findings indicated that PCT can
provide an eloquent and empathetic approach for understanding a range of issues for
adolescents with ASD, including interacting in the complex adolescent social realm, sense-
making of multifaceted situations, identity development, development of flexible processing
styles, and understanding and managing physical and emotional changes associated with
puberty. Further research investigating the application of PCT for understanding adolescents
with ASD is warranted in order to increase our understanding of ASD in general and provide
these individuals, and their families, with appropriate support.
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CHAPTER 5: BEING A GIRL IN A BOYS’ WORLD: INVESTIGATING THE
EXPERIENCES OF GIRLS WITH AUTISM SPECTRUM DISORDERS DURING
ADOLESCENCE
Cridland, E.K., Jones, S.C., Caputi, P., & Magee, C.A. (2014). Being a girl in a boys’ world:
Investigating the experiences of girls with autism spectrum disorders during
adolescence. Journal of Autism and Developmental Disorders, 44, 1261-1274. DOI
10.1007/s10803-013-1985-6.
5.1 Abstract
This study investigates the experiences of adolescent girls with autism
spectrum disorders (ASD) during adolescence. Semi-structured interviews
were conducted with three mother–daughter dyads and two additional
mothers. A range of issues were highlighted covering physical, emotional,
social and sexual domains. Some of these issues were similar to those
experienced by boys with ASD during adolescence, such as negative
implications of late diagnosis, challenges of transitioning to and coping with
high school, ‘hands-on’ role of parents into adolescence, difficulties
adjusting to the increased demands of adolescent hygiene routines, and the
importance of learning personal boundaries in interactions with others.
Other issues discussed were of particular relevance to adolescent girls with
ASD, such as difficulties socialising with neurotypically developing girls,
sex-specific puberty issues, and sexual vulnerabilities. This study highlights
an important research area and is a preliminary step towards understanding
the experiences of adolescent girls with ASD and their families.
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Being a girl in a boys’ world: Investigating the experiences of girls with
autism spectrum disorders during adolescence
5.2 Introduction
The aim of this paper is to investigate the experiences of adolescent girls with an
Autism Spectrum Disorder (ASD). Studies investigating the experiences of adolescents with
ASD have largely focused on males (Hellemans, Colson, Verbraeken, Vermeiren, &
Deboutte, 2007) and those studies that have included females have involved mixed sex
samples, preventing detailed exploration of female specific issues (Nichols & Blakeley-
Smith, 2010; Stokes, & Kaur, 2005). Consequently, this research area has been highlighted as
a significant gap in the literature (Hsiao, Tseng, Huang, & Gau, 2013; Nichols, Moravcik,
Tetenbaum, & Ebrary, 2009; Stokes & Kaur, 2005).
The focus on males with ASD in research to date is attributed to the consistent
predominance of males diagnosed with ASD (Holtmann, Bölte, & Poustka, 2007; Krahn &
Fenton, 2012). The most commonly reported male:female ratio of ASD diagnoses is 4:1; but
there is some disparity, with other estimates as high as 16:1 (Fombonne, 2002, 2003). A wide
range of hypotheses regarding the aetiology of the sex differences have been proposed
including genetics, lateralisation of brain function, imprinting, and low validity of current
assessment tools in detecting the disorder in girls (for a review see Rivet & Matson, 2011b).
Difficulty detecting ASD in girls has been attributed to various factors. Firstly, some
research indicates a larger proportion of girls with ASD have lower IQ ranges (Nichols et al.,
2009; Rivet & Matson, 2011a, 2011b; Volkmar, Szatmari, & Sparrow, 1993). This can result
in females being diagnosed with Learning Disorders (Rivet & Matson, 2011b; Volkmar et al.,
1993) or vague diagnoses such as Pervasive Developmental Disorder- Not Otherwise
Specified (PDD-NOS) (American Psychiatric Association [APA], 2000; Attwood, 2012,
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2013). However, other research reports more even sex-ratios for individuals with ASD with
IQ levels in the normal or subnormal range (Mattila et al., 2007)
A second factor contributing to difficulties detecting ASD in girls is their relatively
‘strong’ social skills, including pretend play (Attwood, 2012, 2013; Solomon, Miller, Taylor,
Hinshaw, & Carter, 2012), communication (Nichols et al., 2009), social imitation (Baron-
Cohen et al., 2011; Hsiao et al., 2013; Rivet & Matson, 2011b), and ability to focus (Nichols
et al., 2009). Additionally, girls with ASD generally have fewer behavioural problems
compared to their male counterparts (William et al., 2012).
These ‘strengths’ can mask underlying social impairments and contribute to delayed
diagnosis (Attwood, 2012, 2013; Baron-Cohen et al., 2011; Nichols et al., 2009; Solomon et
al., 2012). Consequently, many girls with ASD are not diagnosed until they have entered
adolescence (Begeer et al., 2013; Bolick, 2001; Willey, 2003). For example, the imitation of
social interactions is often adequate to maintain friendships during childhood, but it is not
sufficient during adolescence as the complexity of social relationships increase (Bauminger et
al., 2008; Carrington, Templeton, & Papinczak, 2003), and it is at this time that their
significant social impairments become more evident.
The complexities of adolescent relationships are particularly apparent in adolescent
female relationships as they rely primarily on intimate social communication (McLennan,
Lord, & Schopler, 1993; Nichols et al., 2009; Solomon et al., 2012). That is, adolescent
female relationships require more complex skills such as reciprocal sharing, emotional
support, and social problem-solving. In contrast, adolescent male relationships tend to be
based on ‘doing’ rather than ‘talking’ (Nichols et al., 2009). Generally, adolescent girls with
ASD also need extended time to process and then respond to information (Nichols et al.,
2009), which adds to their difficulties following and contributing to fast-paced conversations
with their peers. These issues highlight the ways adolescent girls with ASD are more
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disadvantaged in relation to the development and maintenance of friendships compared to
their male counterparts (Hsiao et al., 2013; McLennan et al., 1993; Nichols et al., 2009; Rivet
& Matson, 2011b).
Additionally, research focusing on neurotypically developing (NTD) adolescent
relationships has indicated that males and females differ in relation to conflict management
(Card, Stucky, Sawalani, & Little, 2008). Whilst boys tend to display overt aggression, girls
display anger in more subtle and indirect ways such as spreading rumours, gossiping,
exclusion, ignoring, and other non-verbal behaviours like giggling and eye-rolling (Card et
al., 2008; Nichols et al., 2009). These latter behaviours have been termed ‘relational
aggression’ as they typically involve a third-party in order to be hurtful to another individual
(Nichols et al., 2009). This style of aggression is more socially complex, meaning girls with
ASD are likely to have difficulty acknowledging and understanding this behaviour.
These differences in relationship styles may be a primary factor contributing to the
higher rates of social isolation (Solomon et al., 2012; Sullivan & Caterino, 2008) and mental
health problems (such as depression, anxiety, eating disorders and poor self-image)
(Cottenceau et al., 2012; Rivet & Matson, 2011b; Seltzer, Shattuck, Abbeduto, & Greenberg,
2004; Solomon et al., 2012; William et al., 2012) identified in adolescent girls with ASD,
compared both to adolescent boys with ASD and to NTD adolescent girls. Together, the
literature in this area highlights that adolescence is a critical period for girls with ASD.
5.3 Study Aims
There is a need for research focusing on the experiences of adolescent girls with ASD
and their families. This point is highlighted both in the research literature and by families
themselves. Consequently, this study investigates the experiences of girls with ASD during
adolescence, from the perspectives of the individuals themselves and their mothers. By
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interviewing the individuals with ASD and their mothers, we aimed to gain a multifaceted
understanding of their experiences. We chose to focus solely on mothers, rather than all
family members, as this is a preliminary investigation. Additionally, by focusing specifically
on mother-daughter dyads we were able to conduct an in-depth investigation of the nature of
these relationships during adolescence.
5.4 Method
Methodological approach
Interpretative Phenomenological Analysis (IPA) (Smith, 1996; Smith, Jarman, &
Osborn, 1999) was used as a guiding approach for data collection and analysis. The aim of
IPA is to explore participants’ views and personal meanings of an issue, rather than provide
objective accounts or explanations (Oliver, 1992). In doing so, the researcher aims to get
close to each participant’s psychological world, while recognising one can at best do this
indirectly (Smith et al., 1999). The benefits of this approach include acknowledgement of
each participant being the expert of their personal experiences, recognition of both the
commonalities and diversities of participants’ experiences, and awareness of the
investigators’ influence during interpretation of interview data. Further, IPA is suitable for
clinical psychological research and has been used to inform similar research in this field
(Carrington, & Graham, 2001; Petalas, Hastings, Nash, Dowey, & Reilly, 2009a; Petalas,
Hastings, Nash, Reilly, & Dowey, 2012).
Sample
A multiple-case study approach was employed to collect data from three mother-
daughter dyads and two additional mothers 9 . This sample is consistent with IPA methodology
9 The daughters were not able to be interviewed as one did not have knowledge of her ASD diagnosis and
parental consent was not provided for the other.
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which typically involves small and homogenous samples, allowing for in-depth investigation
of a specific issue (Smith, 1996; Smith et al., 1999). The participants with ASD were all
female, adolescent (age range 12-17 years), and had a formal diagnosis of ASD based on the
Diagnostic and Statistical Manual of Mental Disorders (DSM ) 4th edition (American
Psychiatric Association [APA], 2000) (which includes conditions within the Autism
spectrum such as Pervasive Developmental Disability- Not Otherwise Specified (PDD-NOS),
Autistic Disorder, and Asperger’s Syndrome [AS]). The annual household income of
participants ranged from AUD$20,000 to AUD$200,000 (M = AUD$84,000). Participants
with ASD and their biological parents were all born in Australia. More detailed demographic
information is presented in Table 5.1
1 3 0
Table 5.1: Demographic information
Daughter
with ASD a
pseudonym
(age)
ASD
Diagnosis
Additional Diagnoses Age at ASD
Diagnosis
Diagnostic
pathway
Current education or
employment
Mother’s
pseudonym
(age)
Family dynamics
(age)
Kasey
(16)
Autistic
Disorder
-Epilepsy (treated
with left temporal
lobectomy)
-Scoliosis
-GORD c
12 Clinical
psychologist
Year 9, mainstream
school with ASD
support unit
Tina
(47)
-Father (53)
-Brother (23), not
living at home
-Sisters (12 and 9)
Erin b
(12)
Asperger’s
Syndrome
Nil 6 Paediatrician
and clinical
psychologist
Year 6 equivalent,
specialised ASD unit
Sharon
(50)
-Father (50)
-No siblings
Bec
(16)
PDD-NOS d
Learning Disorder
(estimated at Year 6
equivalent)
12 Paediatric
psychiatrist
Year 11, mainstream
school with ASD
support unit
Valerie
(50)
-Father not present
-Sisters (19 and 20)
Hannah
(17)
Asperger’s
Syndrome
Epilepsy 14 Paediatrician
and school
counsellor
Supported
Employment Program
Dianne
(51)
-Stepfather
-Brother (35), not
living at home
-Sister (23)
Sally b
(14)
Asperger’s
Syndrome
Nil 9 Psychiatrist Year 9, mainstream
school
Lisa
(54)
-Father not present
-Brother (12),
diagnosed with
ASD a Autism Spectrum Disorder
b Individual with ASD not interviewed
c Gastro-Oesophageal Reflux Disease
d Pervasive Developmental Disorder- Not Otherwise Specified
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Procedure
Ethical approval was granted by the University’s Human Research Ethics
Committee (Appendix L) prior to commencing the participant recruitment process.
Participants were recruited through local schools and community groups via personal
communications from staff at these sites who were informed about the study. Interested
participants were then provided contact details of the research team.
Research aims and potential discussion topics were outlined with participants as
part of the informed consent process (Appendix M). Following ethical standards for
research with children, written consent was obtained from the participants and their
parents (Appendix N) before commencement of the interviews. The interviews were
conducted face-to-face in the participants’ homes to promote familiarity and comfort as
well as avoid connotations of a clinical interview or school related assessment (Mascha,
& Boucher, 2006). On average, interviews lasted for 60 minutes (range 20-120
minutes 10
). Interviews were recorded for later transcription.
The interviews followed an in-depth, semi-structured format. Interviews began
with an open-ended statement (‘What have been your experiences of being an
adolescent girl with ASD/having an adolescent daughter with ASD?’), allowing
participants to lead the discussion. General facilitation was provided to all participants
by suggesting topics of discussion (e.g., school, friendships, family, and developmental
changes), and asking clarifying questions. This format allowed participants to speak
freely and at length about their experiences, minimized researcher control over the
discussion, and facilitated rapport building (Barbour, 2000). Such interview approaches
are consistent with IPA because the researcher is trying to enter the psychological and
10 The shortest interview was with a participant with ASD and was cut short because the participant was
feeling sick and an alternate time to complete the interview was not available. The interview was
included in data analysis because useful information was obtained.
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social world of the participant as she is seen as the expert (Smith, 1996; Smith, et al.,
1999).
Data Analysis
NVivo10 (QSR International, 2012), a qualitative data management program, was
used to manage and analyse the data. Data analysis followed the inductive coding
process outlined by Braun and Clarke (2006), which involves familiarization with the
data (the primary researcher conducted and transcribed all interviews), generation of
initial codes, collation of codes into potential themes with corresponding quotes, review
of themes with credibility checks, and final definition of themes (Braun & Clarke,
2006) 11
. Credibility of data analysis was facilitated by a systematic record of how data
were collected, maintained, and prepared for analysis. Credibility checks involved the
research team reviewing all transcripts together with the potential themes identified by
the first author. Consultation amongst the research team followed and refinement of
themes was undertaken. This consultation process is recognised as an important process
in IPA, given that the analysis of the interview material is inevitably influenced by the
researchers’ characteristics. The research team consisted of four researchers with
various backgrounds of involvement with adolescents with ASD including research,
clinical, and familial experiences.
5.5 Results
Seven key themes emerged from data analysis. The themes are reflected in bold
subheadings. Direct quotations are presented in indented paragraphs, in which square
11 Additional information outlining data analysis procedures including thematic coding procedures and
data integrity and credibility strategies employed are elaborated in Appendix V, Section 3.
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brackets ([ ]) indicate information added for clarity and ellipses (…) indicate material
omitted for conciseness. For purposes of anonymity, all names have been changed.
Diagnostic Issues
All mothers described the process of obtaining an ASD diagnosis as challenging.
Reasons for this included presentation of symptoms, imitation of social behaviour,
higher incidence of ASD in boys, misdiagnosis, and reluctance from health
professionals (e.g., paediatricians, psychologists, psychiatrists, etc) to provide a formal
diagnosis. Four of the five mothers considered the diagnostic process to be more
difficult for girls, when comparing their personal experiences with those of friends who
have boys on the spectrum:
“A lot of the parents in our group have boys on the spectrum and they got
their diagnosis quite early, as early as two years old. We knew there was
problems around that age but we didn’t know enough about Autism to
pursue it… I think Autism is a male thing, I mean more boys get diagnosed
but I think also that a lot of girls with Autism sort of slip through the
cracks because their behaviour gets put down to something else... I think
there is a lot of wrong diagnoses.” (Tina, mother)
“We took her to a psychologist and he said she was showing some features
but he didn’t want to give her a firm diagnosis… she was ‘ghosting of
AS’… Basically it was hard at the beginning because she had some
atypical symptoms…. she wasn’t suffering any anxieties, she wasn’t acting
up, she wasn’t deficient in anything other than social interaction, she
hadn’t chosen an obsessive subject (she still hasn’t, she has multiple) and
those things are normally present in boys.” (Sharon, mother)
“I didn’t really realise there was an issue with her until probably about
Year 4… I think because people look for it more in boys and often it stands
out more. They say that sometimes the girls copy behaviour and that they
can hide it. And Hannah did maintain friendships… That’s why I get
annoyed when people say to me, ‘How did you not know?’.” (Dianne,
mother)
“I always knew there was a problem but nobody wanted to put a diagnosis
on it… no one was willing to put their name down and say that she had it.
It was only when I really started pushing that there was a problem… that
we got the diagnosis.” (Valerie, mother)
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The mothers discussed a range of negative implications related to obtaining a delayed
diagnosis. These implications included inability to access early intervention and support
services, and negative judgement from others:
“I find the late intervention is a huge problem, whereas if we had had
things earlier we could have taught her a lot more things. Like, I still need
to teach her about facial expressions because she still doesn’t know how to
read people at all.” (Dianne, mother)
“Before we had the diagnosis our life was hell… we knew that there was
problems but we didn’t have a diagnosis and that was really hard to work
with the teachers. We changed her schools because they just seemed to
think that she was a bad kid… We were so isolated from the whole
community because people just looked at us as bad people and looked at
her as a bad child.” (Tina, mother)
Contributing to the challenges of obtaining and coping with a diagnosis was the limited
follow-up support received from health practitioners:
“It was like, ‘Well there’s your diagnosis, see ya later.’ We were left on
our own to work through all this information and because you’re going
through that grieving process you can’t think clearly. You don’t know
where to start. You actually need someone to come in and go through it
with you and say, ‘Well what do you think about this? Maybe we can try
that?’ You can’t process it on your own because your brain is so
scrambled with dealing with what you have just been diagnosed… it was
overwhelming.” (Tina, mother)
“…it was hard to link in with services. Nobody made us aware of what
services were available so I have had to do that… [Health practitioners]
don’t link you in with services they just give you a label and leave you in
the dark.” (Valerie, mother)
Being Surrounded by Boys
Participants discussed the experience of living with a disorder primarily
associated with boys. Discussion from the girls and their mothers indicated mixed
opinions. The following quote illustrates the feeling of ‘being different’ that many of the
girls and their mothers described:
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“It’s also hard because she’s different from the students in mainstream
but being a girl makes her different from the kids in the Autism Unit too,
she doesn’t fit in anywhere.” (Valerie, mother)
The difficulties of fitting in were felt most by the girls who did not have interest in
traditionally ‘boys’ activities such as sports. For example:
“Many of the services aren’t catered for the girls, so it can be hard to get
support. Many of the times boys get preference for using the service and
sometimes the activities are geared towards the boys. It makes it hard
because Bec doesn’t like to do sports and I have to force her to do it.”
(Valerie, mother)
Despite the drawbacks, many of the participants discussed positive aspects of ‘being
surrounded by boys’. These positive aspects included the perception that adolescent
boys were easier to get along with than adolescent girls and that gender may not be
important for the girls with ASD as their relationships were primarily built on common
interests. For example:
“It’s good. I get along better with boys than the girls because I’m like
more of a tom-boy, like I’m into boys stuff like soccer and skateboarding so
me and all the boys have lots in common so I have gotten along well with
them. I’ve got a group of friends with them.” (Kasey)
“I was the only girl in the [electronics] class… at first it was really weird
but then I got used to it and I got to know them… I have noticed that I get
along with boys better than girls… I’m not sure [why].” (Hannah)
“When I saw the Autism Unit was all boys I thought it was going to be
really hard for her… but I must say that she has fitted in and I think it’s
because they are boys because girls are bitchy and they get jealous and
they try to bring you down whereas boys aren’t like that and like they’ll go
play soccer and she’ll join in… I think the fact that there are not a lot of
girls there makes her feel a bit more secure because when she has been
around girls they have really bullied her.” (Tina, mother)
“She knows everyone in her class so I don’t think she’s worried about
being the only girl in the class. I think it’s not a problem because she’s
more likely to like some of the subjects they like, they all like space and
animals and the detail of things. She’s more like a boy in that sense. I don’t
think it worries her that you’re a boy and I’m a girl.” (Karen, mother)
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Experiences of High School
Experiences at high school were discussed by all participants. Mixed experiences
and opinions were discussed both by girls with ASD and by the mothers. Positive
aspects of high school included being exposed to a broader range of subjects and
students, and the more structured environment:
“It was ok changing classes and having lots of teachers was different but it
was ok. It didn’t bother me having to pack up my bag and move classes...”
(Bec)
“I think she’s coping with [high school] ok, I didn’t think she would but
she organises herself well with her diary. And I’ve seen her write little
notes on her school bag going, ‘remember to take sports uniform’. So she’s
actually quite organised… The thing with high school is that even though
they are going to different classes with different teachers, I think because
they get a diary and a timetable they’re ok because it’s probably structured
more than what primary school is.” (Tina, mother)
“I think the high school environment is more academic and there is a
bigger range of people, she’s not with the same 25 kids day in, day out. She
will be changing subjects, so she has a chance to meet people with her
interests and they also have social clubs and groups so she can join one
that suits her interests. So I think that is a friendlier environment than
primary school which can be really nasty if you don’t fit in.” (Sharon,
mother)
Negative aspects of high school raised by girls with ASD included finding the class
work difficult and/or uninteresting, challenges making friends, and managing the larger
school environment:
“[High school is] boring... It’s not interesting, it’s boring [and it’s hard]
trying to keep up with the work... both [class work and homework], it’s too
hard.” (Bec)
“High school was harder because I had friends in primary... [Going to a
larger school] was hard sometimes. It was different.” (Hannah)
Negative aspects raised by mothers involved mainstream teachers’ limited knowledge of
ASD symptomology in girls:
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“School has been one of the biggest struggles that we have had... the
teachers just didn’t have an understanding about Autism and they were
sending her home from school for doing things that were clearly autistic…
We got the spot at [School X, a high school with an Autism unit and]... she
absolutely loves it and they totally get her. Her behaviours have settled
down, her marks are improving. It is just sad because it took so long
because you’re dealing with people that don’t understand the disability...”
(Tina, mother)
“The problem I found with the schooling system when she was in
mainstream was that the teachers didn’t always understand the problem.
They didn’t always acknowledge that there was a problem there at all and
if they did they didn’t always know how to deal with it. The ones that knew
about Autism knew more about what it was like in boys like the stereotype
things like hitting their head against the wall. And the issue was that a lot
of those ‘bad’ behaviours she doesn’t display.” (Valerie, mother)
The transition from primary to high school was discussed by all mothers, with the
general consensus that this transition was a difficult period. The main challenges
involved adjusting to new routines such as having multiple teachers:
“[The transition from primary to high school] was a nightmare... She
struggled with all the different classes, the physical stuff of having to carry
a bag... she didn’t like most of her teachers, she didn’t like the different
buses... The first two years of high school she didn’t use her diary and she
was carrying the wrong books every day... This year when I ask her how it
is going she says, ‘Aw good’.” (Lisa, mother)
“The transition from primary to high school was difficult, even the change
from one teacher to another at the beginning of the year at primary was
always difficult for her so going from primary to high school was
extremely difficult for her. I was constantly up at the school talking to her
year advisor and discussing issues with teachers... She didn’t cope at all,
then when she finally got into the Autism Unit in year 8 it made it a lot
easier.” (Valerie, mother)
Complexity of Adolescent Female Relationships
A participant with ASD eloquently described her negative experiences of trying to
develop friendships with her NTD peers:
“Because I have a disability, they ignore me or pick on me and bully me
just because of that. It’s hard, especially with like the really popular girls,
they won’t even listen to me; as soon as they hear that I have a disability
they just won’t even listen to me and what I have to say.” (Kasey)
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Similarly, all five mothers described the difficulties their daughters experienced
developing and maintaining friendships with NTD adolescent girls. Topics discussed
included; the increasing complexity of adolescent female friendships, experiences of
relational aggression, and, for some, an apparent disinterest in relationships:
“She had friendships but then they all just fell apart… [When she was
younger] she could play with others, I don’t know if she learnt it from
watching others, like she would do the ‘Barbie thing’ with the other girls
and she had sleepovers and all that…. but between Year 4 and Year 6 they
just went downhill dramatically, she could not read what people expected
of her, she didn’t know how to do the conversation thing of I talk then you
talk….” (Dianne, mother)
“As far as friends-wise she has to rely on the mainstream kids to become
friends with [but] I’ve noticed that other teenage girls are a lot more
social than she is. She tends to be more of a loner, so that whole thing of
being a teenager and being off with your friends all the time hasn’t
happened yet.” (Valerie, mother)
“…[adolescent girls with ASD] get shunned by the others and they get left
on their own and they get picked on because adolescence is so much about
fitting in for girls.” (Tina, mother)
“Girls are so nasty. I took her to the movies a couple of months ago and…
these girls just stood there laughing at her and Hannah didn’t realise what
was going on but I certainly did… I think girls have such high expectations
within their own little social groups… Like, you know how they all kiss
and cuddle and that? Hannah can’t do those things, like she would know
when she is supposed to… So if you don’t know the rules, how are you
going to survive in a little pod like that?” (Diane, mother)
Three of the five mothers felt that the difficulties experienced by their daughters in
connecting with their NTD peers were greater than those experienced by boys they
knew with ASD. The main reason proposed was the tendency for male relationships to
be based on hobbies:
“… [Boys with ASD] sort of fit in so they don’t have the problems at
school like the girls have… like if you’re a bit of a geek these days it
doesn’t matter, it can even be a cool thing! But it’s not cool for a girl… I
can see the difference in the boys who can just slide under the radar but
the girls stick out like a sore thumb… I think the girls do want it more
whereas I think the boys don’t care. And if they’re into their video games
well that is normal for a boy!” (Tina, mother)
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“The Autism boys tend to like sports and that makes them more socially
acceptable… [the ones] who don’t fit in aren’t terribly sporty and they
like more intellectual things.” (Sharon, mother)
All mothers discussed their daughters’ limited interest in fashion in comparison to NTD
adolescent girls in a Western culture. Reasons for this disinterest included preference
for practical clothes and difficulty understanding of the social aspects of fashion, such
as ‘dressing-up’ for certain occasions, and dressing to impress others or portray
femininity:
“Hannah has always liked pretty plain, more like boys, clothes. I think it’s
because they are easy and practical. And she’s never really understood the
thing of clothes for going out and clothes for just day time stuff. Like I
might say, ‘Go and put something nice on because we are going out’ and
she’d say, ‘But I don’t know what you mean! What do you mean?’”
(Dianne, mother)
“If I tell her that something is the sort of thing you wear to a party then she
will wear it and look the part but she’s not a ‘girly’ girl… I don’t know
how many ‘girly’ girls there are on the spectrum. I have never met one…
Their Mums’ might be teaching them how to look nice but I don’t think it’s
innately in them….” (Sharon, mother)
The mothers described the ways their daughters’ disinterest in fashion had impacted
negatively on their opportunity to fit in with NTD peers:
“I think being a girl and having to go through all those girly stages like
having the nice hair and the trendy clothes [must be hard]. And I think
sometimes the girls [with ASD] will wear something that is just not right
and they think it looks great but it’s so hard to actually say, ‘Look don’t
wear that because you’ll get bullied.’” (Tina, mother)
Puberty and its related issues
Puberty was a major issue of discussion in all interviews with the mothers. Onset
of menstruation was by far the greatest puberty-related concern for the mothers.
However, of those whose daughters had begun their periods (4/5), all described surprise
at how well their daughters had managed. Factors contributing to this positive coping
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included the logical and factual attitude their daughters showed towards periods, and
their daughters’ willingness to discuss issues:
“I was dreading her getting her periods because I didn’t know how she
was going to cope but I think she might be better than my NTD children! …
she’s always prepared and if there’s any problems she will come and talk
to me about it. So she’s open about it, she doesn’t try to hide it, she’s not
embarrassed… I find that quite refreshing actually; I like that she is open
and feels she can talk to me about things.” (Tina, mother)
“When I talked to Erin [about puberty]… she was very factual about it…
for her this was a whole bunch of facts about her body and it wasn’t
emotional… for the girl on the spectrum… it is pretty black and white. So it
is easy to tell them facts.” (Sharon, mother)
The mothers also highlighted various challenges associated with the logical attitude
towards puberty described previously in this section. The main challenge was their
daughters’ having little discretion about usually private matters:
“…the concept I had to get my head around was how she does everything
literally, like I would say, ‘Ok, when you’re finished with your pads you
need to put them in the bin’ so Hannah would walk through the house with
them in her hand. My son was like, ‘Argh!’ because they weren’t wrapped
up or anything. So then you have to go, ‘Ok, I need to think how Hannah
needs to hear this.’ …Even now she will put it in the bin… [but] she
wouldn’t think that she should hide it or anything…” (Dianne, mother)
“When she’s got her periods we all know about it! Whereas a NTD child
would probably be a bit shy and quiet and not say anything about it….
she’s not discrete and I guess that’s part of the Autism.” (Tina, mother)
Hygiene routines was another issue discussed by all mothers, with four of the five
saying they continued, from childhood, to be involved in a ‘hands-on’ role with their
adolescent daughters. The main issues discussed involved their daughters’ difficulties
adjusting to the increased demands of hygiene practices (e.g., use of deodorant and need
for daily showering), and the impact these hygiene practices had on themselves as
mothers of an adolescent girl with ASD:
“I have to remind her to have a shower every day… And she’ll get in the
shower and she’ll stand there and play with the water if I don’t remind her
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to put her shampoo in her hair and rinse it... She’ll be in the shower for
half an hour and do nothing! After years of having showers and baths
she’s not bothering to learn and yet she can learn really complicated
things. It’s typical of AS girls that that sort of thing isn’t important to them.
So yeah I would like to stop doing that... And I do see my friends and their
[NTD] girls seem to take all that responsibility onto themselves and it
would be nice not to have to do it but it’s the way it is.” (Sharon, mother)
“I have to take more responsibility for her in terms of hygiene and making
sure she has a shower everyday [and] getting her to use deodorant and
basic hygiene stuff.” (Valerie, mother)
Sexual relationships and concerns
Increasing exposure to sexual issues and romantic relationships was another issue
discussed by the mothers. Three of the five mothers felt that their daughters were less
involved in these issues than their NTD peers. Reasons for this included showing little
interest romantically in boys, knowing personal boundaries and rules, and willingness to
talk to parents about issues:
“She’s not interested in the whole boy issue or the sexuality stuff. In that
sense I’m kind of happy because I was always worried about what my
other [NTD] girls were getting up to!” (Valerie, mother)
“[Regarding sex] I think she understands it and knows about it but I think
she is not interested at this stage… she actually has a boyfriend… but
because they are all on the spectrum they sort of know their boundaries,
like they know that there are things they shouldn’t do before they get
married… I have to kind of trust her. And because she will come and talk
to me about anything I think that if anything happens she will come and
talk to me more than my other kids might!” (Tina, mother)
One mother also discussed how she thinks puberty is different for adolescent boys with
ASD compared to girls because she speculated that the boys may have more sexual
urges that need to be managed:
“…I think as the boys [with ASD] mature it may be harder for them to
deal with those urges then what it might be for a girl… so I think the boys
are probably more involved in the sex stuff than the girls.” (Tina, mother)
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All mothers agreed that their daughters faced unique challenges related to sexuality and
romantic relationships due to their ASD. Such challenges included their propensity to
become fixated on particular issues, possible confusion about personal boundaries, and
misunderstandings over typical adolescent behaviour such as flirting:
“Sometimes I have thought she is gay… or that she’s asexual. It’s nearly
like she doesn’t want anyone to touch her because she never gets that close
to anybody. But then if the physical gratification makes her feel that
somebody likes her then she might become really into sex. I think it could
go either way, either totally into sex or totally not.” (Lisa, mother)
“[Romantic relationships are] not as factual and not as scientific. It’s so
much more judgemental- ‘How do I know that when he’s touching me, he’s
just touching me in an ok way?’ How exact can you be? It’s so grey.”
(Sharon, mother)
“She doesn’t understand it, like my niece is 15 tomorrow and she’s all over
boys and Hannah just says, ‘What is she doing Mum? Why does she act
like that? Why does she wear those short shorts?’ She doesn’t understand
any of it. She doesn’t understand how other girls are wearing revealing
clothes to attract men or boys or whatever, she doesn’t understand it… and
the whole sex thing- she gets all that, but her difficulty is that she doesn’t
understand why, she’s always like, ‘Yeah, but why?’.” (Dianne, mother)
Related to this issue was concern that their daughters with ASD may be vulnerable to
being exploited by others. The primary concern related to this issue was that their
daughters can be overly trusting of others:
“One of the parents I know, who also has AS, has told me that when she
was young she slept with lots of boys because they told her that they loved
her. So I do worry that she doesn’t have a deep understanding of these
issues and I don’t worry that Hannah would do something, it’s the case of
somebody taking advantage of her.” (Dianne, mother)
“…it is a worry that she may meet someone who is NTD and knows that
she is not NTD and takes advantage of her, so there is always that worry.
And the fact that she is very trustworthy, like if somebody says something
she believes that to be true… But that worry will become bigger when she
gets older and leaves school and starts working and starts going out of a
night… because there are people out there that would take advantage of
her and to fit in she would probably do things to fit in.” (Tina, mother)
“…it’s coming to that point where I am going to have to have very specific
conversations with her... to make sure we have the same understanding
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around who can do what and who can touch what… I know she won’t like
it because she will think she knows the answers. But I will have to because
a couple of boys are paying attention to her… you do worry what would
happen if they were in a room alone together, like whether he would take
advantage of her.” (Sharon, mother)
Impact of having an adolescent daughter with ASD
Throughout the interviews mothers discussed various ways having an adolescent
daughter with ASD impacted them. The predominant theme was that they remained
very involved in their daughters’ lives compared to mothers they knew who have NTD
adolescent girls. Such ‘involvement’ included being connected with the school and
other activities, helping with homework, facilitating hygiene routines, and undertaking
high levels of planning for activities:
“I was constantly up at the school talking to her year advisor and
discussing issues with teachers. I’ve always been very active and involved
with her... For other parents adolescence is a time of stepping back, like
still being there for them and giving them advice or whatever, but I have to
constantly push her along... I see other parents with teenagers and it’s like
they are getting their lives back but for me it is ongoing.” (Valerie,
mother)
“We are thinking about her all the time… virtually our whole lives have
revolved around her… Even planning a day out to a beach takes lots of
planning and things you have to think about. You can’t just on the spur of
the moment go and jump in the car and go somewhere… all of that
constant thinking is really draining… I guess because she has Autism we
are a little but more protective of her than what we are of the others. We
virtually know where she is all the time, there hasn’t been a situation
where we haven’t known exactly where she was and who she was with... I
feel like I am a hands-on parent until the day I die and I will be.” (Tina,
mother)
The mothers also discussed the impact of having a daughter with ASD in comparison to
how they perceived the impact of having a son with ASD would be. Issues discussed
primarily involved remembering the importance of being accepted by other teenage
girls and a desire for their daughters to experience acceptance:
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“I think it’s heart breaking for the Mums, and it probably is for the Mums
of boys [with ASD] as well, but I think for the girls it’s different because
you’re a girl and you know what it is like going through school and how it
was to be popular and look nice and be accepted and to be involved in
things and to be invited to things. I think when they are not invited to
parties and outings with kids their own age, I think it hurts you more than
it hurts them. I think they deal with it in their own way but I think the
parents take it on board themselves and it is just heart-breaking to see…”
(Tina, mother)
“At her formal when she left primary school she wore black pants and a
black and white check shirt with a black leather hat…. The comments from
the Mums… hurt because she wasn’t in a dress, massive heels and all
glammed up like the other girls….” (Lisa, mother)
Throughout the interviews the mothers indicated various attitudes towards having an
adolescent daughter with ASD. These attitudes ranged from a focus on the challenging
aspects (such as reduced career and social opportunities) to acceptance, positive
meaning making, and even personal growth:
“For me, because I had kids so early, I always felt like at some point I
would get my life back... Then I realised that that wasn’t going to happen...
It is like a loss... And now that she’s becoming more clingy it makes it
really hard.” (Dianne, mother)
“It’s such hard yakka just keeping things going so I’ve had to step back. I
can’t put any more time into her, I have done 150% but if I did 300% it
still wouldn’t be enough for her. Also, I have felt she doesn’t want that
attention. I remember helping her with homework and she was like, ‘Oh
you don’t do it that way!’ And it was just this horrible battle where she
would turn on me but I was just trying to help... It used to hurt. I am
disappointed about it because I think, ‘I’m her Mum but she won’t hug her
Mum.’ It used to bother me more but I am sort of over it... I’m totally
exhausted and totally burnt out.” (Lisa, mother)
“I feel that having Bec has isolated me due to the sheer time she
demands... I need help with getting her more independent because the
more independent she becomes the more independent I can be... [As she
gets older] I have a better understanding of her and understand the ways
she is different from an ordinary teenager.” (Valerie, mother)
“I think it has been like a roller-coaster, in the beginning we didn’t know a
lot about it [ASD]. When you get the diagnosis I think you go through a
sense of grieving... now that we are getting more connected with the
services and we are not feeling so isolated like it is just us, I’m a lot more
confident and the positives are coming out a lot more... it’s like we’ve
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come through the fog and are coming out through the other end... I can see
how far she has come and she has come that far because we are learning
as well as her...” (Tina, mother)
The mothers discussed a range of practical strategies they used to cope with these
challenges. The main strategies included taking ‘time-out’, and social involvement with
mothers of both NTD children and those with ASD:
“I make time to myself and I sit down and read a book… I also talk to
other parents of kids on the spectrum; I make time to do it… You need
people that you can trust with your information. I think I’m lucky that I
have people like that both on the spectrum and off the spectrum…”
(Sharon, mother)
“The parents get a lot out of it [social group] too… its always like, ‘Gee,
this is what has happened with my son or daughter this week, has that ever
happened to you?’ and others will be like, ‘Oh yeah, exactly the same!’
And I think just hearing it come out of other parents mouths- that their kids
are doing the same as your kids, you sort of get that feeling that you’re not
the only ones and that you’re not that different. We may not belong in the
NTD society but we can form our own little group. It makes you feel like
your socialising again and you’re not isolated…” (Tina, mother)
5.6 Discussion
To our knowledge, this is the first study to investigate the experiences of
adolescent girls with ASD from the perspectives of the individuals themselves and their
mothers. The main themes included: diagnostic challenges; the impact of ‘being
surrounded’ by boys; experiences of high school; the complexity of adolescent female
relationships; puberty and sexual issues; and positive and negative impacts of having an
adolescent daughter with ASD.
Some of these issues may be similar to the experiences of adolescent boys with
ASD, such as negative impact of late diagnosis (Kabot, Masi, & Segal, 2003);
challenges of transitioning to and coping with high school (Adreon & Stella, 2001);
‘hands-on’ role of parents into adolescence (Brewin, Renwick, & Fudge Schormans,
2008); difficulties adjusting to the increased demands of adolescent hygiene routines
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(Bolick, 2001; Chan & John, 2012); and the importance of learning personal boundaries
in interactions with others (Nichols & Blakeley-Smith, 2010). Other issues seem to be
unique to the experiences of adolescent girls with ASD and their families, such as some
of the difficulties developing and maintaining friendships with NTD peers; the
implications of having a condition with a skewed sex differentiation; sex-specific
puberty issues; and sexual vulnerability. These issues will be discussed in more detail in
the next section.
Challenges developing and maintaining friendships
All participants with ASD reported experiencing difficulty developing and
maintaining friendships with NTD adolescent peers. Contributing factors discussed by
participants were in line with the literature, and included reliance on imitation skills
during childhood to mask underlying social deficits; difficulty following conversations
due to the length of time needed to process information; and difficulty fitting in due to
disinterest and minimal understanding of fashion (Nichols et al., 2009; Solomon et al.,
2012).
Another factor which may have contributed to the girls’ difficulties developing
and maintaining friendships with their NTD peers is their history of socialising
predominantly with males who have ASD (McLennan et al., 1993; Nichols et al., 2009).
Greater socialisation with males with ASD (in school classes and social groups) is
natural given the preponderance of males diagnosed with the disorder. The implications
of socialising predominately with males with ASD may be that the girls develop
friendships that are more in line with ‘male’ friendships (Knickmeyer, Wheelwright, &
Baron-Cohen, 2008). Characteristics of adolescent ASD male friendships include: more
numerous, casual friendships (Card et al., 2008); companionship based on activities
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(Bauminger, Shulman, & Agam, 2004; Carrington et al., 2003); and less socially
complex interactions (Bauminger, Shulman, & Agam, 2003; Bauminger et al., 2008;
Koning, & Magill-Evans, 2001). These characteristics were reflected in the interviews,
with participants indicating that males with ASD were easier to get along with than
NTD girls, especially when they shared similar interests.
Puberty-related challenges and concerns
This study also highlighted the range of changes and challenges related to puberty
that adolescent girls with ASD, and consequently their mothers, experience.
Apprehension regarding the onset and ongoing management of menstrual care was the
most salient puberty-related concern reported by the mothers. Maternal concern about
the onset and management of menstruation for daughters with ASD is echoed in the
broader literature (Klett & Turan, 2012; Koller, 2000; Nichols et al., 2009). Specific
concerns highlighted in this study, and by the literature, include explaining menstruation
in a developmentally appropriate way; management of the practical aspects of
menstruation; and importance of hygiene practices (Nichols et al., 2009). Despite these
concerns, our findings and other research indicate that girls with ASD generally cope
well with this aspect of puberty (Koller, 2000). However, it should be noted that
interviews did not capture the girls’ perspectives about menstruation. We suspect this
was a result of the open nature of the interviews, in which participants were asked
generally about ‘developmental changes’ but not asked specifically about menstruation.
Another puberty-related concern expressed by mothers was the potential sexual
vulnerability of their adolescent daughter with ASD. Specific concerns highlighted by
this study, and echoed in the literature, include fears of sexual exploitation, the need to
play a protective role for their child, and concern their child may misinterpret the
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intentions and behaviours of others due to their intrinsic social and communicative
impairments (Murphy & Elias, 2006; Nichols & Blakeley-Smith, 2010; Stokes & Kaur,
2005; Sullivan & Caterino, 2008). It should be noted that the prominence of sexual
concerns may be inflated in this sample as the majority were older adolescents. Despite
this, sexual concerns appear warranted with estimates that 16-25% of individuals with
ASD have been sexually abused (Chan & John, 2012; Chan et al., 2008). Additionally,
the literature indicates sexual vulnerability concerns are shared by both parents of girls
and boys with ASD (Ruble & Dalrymple, 1993).
Experience of being a mother of an adolescent girl with ASD
Throughout the interviews mothers reflected on the impact of having an
adolescent daughter with ASD. Some mothers discussed the challenges associated with
ASD during adolescence, including the need for high involvement in daily activities
with their adolescent daughters, and experiencing a sense of isolation associated with
this. Positive aspects of parenting a child with ASD were also evident. These positive
aspects included close relationships with their daughters, increased understanding of
ASD over time, witnessing improvements in their daughters’ functioning, and
connecting with other families living with ASD. Importantly, interviews also reflected
multifaceted attitudes that included both positive and negative elements. Such attitudes
included positive meaning making of challenges, altered expectations for their
daughters, and acceptance of their role as a parent of a child with ASD. These mixed
attitudes highlight the complex impact of ASD on families. The theoretical concepts of
‘Ambiguous Loss’ (Boss, 1999, 2004; O’Brien, 2007) and ‘Traumatic Growth’ (Heiman
& Berger, 2007) account for such impact by recognising that distress and psychological
growth often co-exist. Cridland et al. (2013) discuss the importance of acknowledging
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the complex impact ASD has on families by investigating both positive and negative
implications of living with ASD.
5.7 Limitations and Recommended Future Research
The following points highlight some limitations of the current study and how
these issues may be addressed in future research.
1. Findings highlight various issues which may be unique to the experiences of
adolescent girls with ASD and their families (e.g., implications of having a
condition with a skewed sex differentiation; sex-specific puberty issues; and
sexual vulnerability). Whilst replication of these findings is needed, they
acknowledge the need to investigate the experiences of adolescent boys and girls
with ASD, and their families, separately.
2. This study utilised the perspectives of adolescent girls with ASD as well as their
mothers. However the perspectives of other family members are also needed.
Future research may benefit from including perspectives of various family
members (e.g., fathers, siblings) and other significant individuals (e.g., teachers,
extended family).
3. Whilst this sample may be considered homogeneous relative to other studies,
there remain areas to be improved. For example, future studies could aim for
greater diagnostic homogeneity within the autism spectrum (i.e., level of social
and/or cognitive functioning); more specific age of participants (young, middle,
and late adolescence); and greater attention to the influence of family dynamics
(e.g., sibling age, birth order, and gender).
4. This study utilised an open-ended interview format, in which participants were
merely provided with a suggestion of topics related to their experience of being an
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adolescent girl with ASD/having an adolescent daughter with ASD. Whilst this
approach allows participants to speak freely about issues which are most salient to
them, future research may benefit from utilising a more structured approach with
specific questions related to adolescent issues (e.g., regarding adolescent girls’
with ASD experience of menstruation).
5.8 Clinical Recommendations
The following clinical recommendations are based on the issues raised in this
study, and may be useful for health practitioners, clinicians, teachers, and families living
with ASD.
1. Clinicians need to become more aware of the presentation of ASD in females and
the ways this may differ from typical male presentations (Attwood, 2012, 2013).
Greater awareness of ASD by clinicians is likely to facilitate less challenging
diagnostic pathways and earlier access to support services.
2. The difficulties experienced with peer relationships (and the social isolation that
can often occur as a result) are a key factor contributing to mental health
problems, such as depression and anxiety, during adolescence (Müller, Schuler, &
Yates, 2008). Clinician support may include in-depth measurement of mood
symptoms (Kim, Szatmari, Bryson, Streiner, & Wilson, 2000), communication
and social skills training, strategies to increase self-esteem, and exploration of
identity (Cottenceau et al., 2012; Nichols et al., 2009). Peer education and
coaching programs at schools may also be important for increasing peer
acceptance and understanding about ASD (Chan, 2009; Humphrey, 2008;
Humphrey & Symes, 2010). Families should endeavour to provide accepting
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home environments and involve their adolescent with ASD in support services
with a social component to facilitate friendship opportunities.
3. The sexual vulnerability of adolescent girls with ASD was highlighted in this
study. Sexual education and support should begin during childhood (Chan &
John, 2012) and needs to be individualised and developmentally appropriate
(Sullivan & Caterino, 2008). Appropriate topics to cover include physical changes
associated with puberty, personal boundaries, and healthy strategies for expressing
sexuality (Klett & Turan, 2012; Tarnai & Wolfe, 2008). The most efficacious
sexual education and support will be provided collaboratively between parents,
clinicians, and teachers (Klett & Turan, 2012; Nichols & Blakeley-Smith, 2010;
Travers & Tincani, 2010).
4. Involvement in social support services is recommended for all adolescents with
ASD and their families (Lasgaard, Nielsen, Eriksen, & Goossens, 2010; Pinkerton
& Dolan, 2007). Further, gender specific groups may be helpful for adolescent
girls with ASD, and their parents, given the unique issues they face (Holliday-
Willey, 1999; Nichols et al., 2009).
5.9 Conclusion
We conducted this qualitative study with no intent of generalizing the results to all
adolescent girls with ASD and their mothers. Nonetheless, the experiences discussed by
the participants may well be shared by other adolescent girls with ASD and their
families. The themes highlight a range of issues covering physical, emotional, social
and sexual domains. Some of these issues were similar to those experienced by boys
with ASD during adolescence; such as negative implications of late diagnosis,
challenges of transitioning to and coping with high school, ‘hands-on’ role of parents
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into adolescence, difficulties adjusting to the increased demands of adolescent hygiene
routines, and the importance of learning personal boundaries in interactions with others.
Other issues discussed were of particular relevance to adolescent girls with ASD; such
as difficulties socialising with NTD girls, sex-specific puberty issues, and sexual
vulnerabilities. It is important that we, as researchers, clinicians, and family members,
attempt to understand these issues in order to provide these individuals with appropriate
support.
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CHAPTER 6: EXPERIENCES OF PARENTS OF ADOLESCENTS WITH AND
WITHOUT AUTISM SPECTRUM DISORDER: ROLES, RESPONSIBILITIES,
CHALLENGES, AND COPING STRATEGIES.
Cridland, E.K., Jones, S.C., Caputi, P., & Magee, C.A. (under review). Experiences of
parents of adolescents with and without autism spectrum disorder: Roles,
responsibilities, challenges, and coping strategies. Focus on Autism and Other
Developmental Disabilities.
6.1 Abstract
This study investigates the parenting experiences of mothers and
fathers with both a neurotypically developing (NTD) adolescent
and an adolescent son with Autism Spectrum Disorder (ASD).
More specifically, the study explores the roles and
responsibilities undertaken by parents for their adolescent son
with ASD, compared to their NTD adolescent child. Qualitative
interviews were conducted with 26 participants from eight
families, including mothers, fathers, adolescents with ASD, and
NTD adolescent siblings. Various parenting roles were
identified, including Nurturer, Advocate, Educator, and Social
Co-ordinator, some of which may be unique and/or of
heightened significance when parenting an adolescent with ASD.
The paper discusses the influence of parental roles on family
functioning; the challenging aspects of parenting an adolescent
with ASD; the coping strategies used by parents; and parental
advice for parents and clinicians. Understanding the unique
issues for parents of adolescents with ASD is important for
providing evidence-based clinical support to these families.
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Experiences of parents of adolescents with and without autism spectrum disorder:
Roles, responsibilities, challenges, and coping strategies.
6.2 Introduction
Adolescence is a critical period of development, involving a range of social,
emotional, physical, and cognitive changes, as well as transitions into high school and
increasing expectations, roles and responsibilities (Levesque, 2011). Adjusting to these
changes can result in vulnerabilities to stress, anxiety, and other emotional issues (Smith
Myles & Simpson, 1998). Adolescence is considered particularly challenging for
individuals with Autism Spectrum Disorder (ASD) 12
due to the scope and socio-
emotional nature of many of the developmental changes inherent to this period
(Lasgaard, Nielsen, Eriksen, & Goossens, 2010; Levy & Perry, 2011; White &
Roberson-Nay, 2009).
For parents of individuals with ASD, adolescence is considered one of the most
challenging developmental stages (Chan & John, 2012; Gilchrist et al., 2012). Some of
the challenges characteristic of adolescence include managing behavioural problems
and sexual developments; ongoing coping with the social and emotional deficits
inherent to the condition; managing the increased academic, social, and cognitive
demands of high school; and planning for future residential, vocational, and leisure
services (Hellemans, Colson, Verbraeken, Vermeiren, & Deboutte, 2007; Hendricks &
Wehman, 2009; Humphrey & Lewis, 2008). In addition, higher levels of depression,
anxiety, worry, embarrassment, and emotional exhaustion have been associated with
parenting an adolescent with ASD, compared to NTD adolescents and adolescents with
other conditions (Hartley, Seltzer, Head, & Abbedutto, 2012; Hayes & Watson, 2013;
12 Individuals with ASD experience persistent and significant social communicative impairments, as well
as restricted and repetitive behaviours and/or interests (American Psychiatric Association [APA], 2013).
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Rao & Beidel, 2009). For example, a study investigating the psychological wellbeing of
fathers of adolescents with Downs Syndrome, Fragile-X Syndrome, and ASD found the
fathers of adolescents with ASD reported significantly higher levels of depressive
symptoms than the other groups (Hartley et al., 2012)
Despite the challenges of parenting a child with ASD, recent studies recognise the
opportunities for enrichment and growth that this role can provide (Altiere & von
Kluge, 2009; Phelps, Hodgson, McCammon, & Lamson, 2009). For example, having a
child with ASD has been positively related to adaptive coping processes, such as
accessing social support, self-efficacy and effective organisation of family activities
(Bayat, 2007; Heiman & Berger, 2007). Some research indicates that as children with
ASD grow older, parents can become more confident in their ability to cope with their
child’s needs and therefore more content with their role as a caregiver (Benson, 2014;
Phelps et al., 2009). Other research has found that some relationships within the family
system (FS) become strengthened when there is a family member with ASD (Fong,
Wilgosh, & Sobsey, 1993; Rivers & Stoneman, 2003). However, the extent to which
such findings translate to having an adolescent family member with ASD remains
unclear.
More specifically, research is needed investigating the parenting roles undertaken
by mothers and fathers for their adolescent child with ASD, and further, how these
parenting roles differ to those provided for NTD adolescent children. First, research
indicates that parenting an adolescent with ASD requires a greater level of overall
caregiving compared to parenting an NTD adolescent (Cridland, Jones, Caputi, &
Magee, 2014a; Fong, Wilgosh, & Sobsey, 1993). For example in a recent study,
mothers of adolescent girls with ASD reported high levels of caregiving responsibilities
continuing from childhood which they considered more complex and time demanding
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than those provided by mothers of NTD adolescents (Cridland et al., 2014a). Such
responsibilities covered a range of domains such as being connected with the school and
other activities, helping with homework, facilitating hygiene routines, and undertaking
high levels of planning for social activities (Cridland et al., 2014a).
Preliminary literature in this area also indicates that parenting an adolescent with
ASD involves a range of caregiving roles that are unique or of increased importance
compared to parenting a NTD adolescent (Fong, Wilgosh, & Sobsey, 1993; Rocque,
2010). Such roles include managing behavioural difficulties (e.g., frustrations from
disruptions to daily schedules, obsessive and/or impulsive behaviours) and providing
advocacy to professionals, support services, schools, and members of the community
and extended family (Cridland et al., 2014; Fong, Wilgosh, & Sobsey, 1993; Neely-
Barnes, Hall, Roberts, & Graff, 2011).
Given the range of challenges inherent to parenting an adolescent with ASD and
the related roles and responsibilities, research is warranted investigating the coping
strategies used by these parents. Existing research indicates parents of children with
ASD utilize a range of coping strategies, including both formal (e.g., ASD specific and
non-specific support groups, respite services, and professional counselling) (Luther,
Canham, & Cureton, 2005; Rivers & Stoneman, 2003) and informal supports (e.g., time
spent with their spouse, friends and family) (Heiman & Berger, 2007; Rao & Beidel,
2009; Solomon & Chung, 2012; Weiss, 2002). Following this, research indicates most
parents adopt a range of coping strategies as they each provide different types of
support. For example, spousal support is considered to provide emotional and practical
assistance (Rao & Beidel, 2009; Solomon & Chung, 2012); whereas ASD support
groups are said to provide educational, emotional, and practical support (Luther,
Canham, & Cureton, 2005; Rivers & Stoneman, 2003).
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However, the extent to which parents of adolescents with ASD find the coping
strategies identified by parents of children with ASD useful remains unclear. For
example, Beresford (1994) posited that the importance of support groups may decrease
with the increasing age of the child with ASD because parents develop greater
understanding of ASD over time. Research investigating the coping strategies utilized
by parents of adolescents with ASD is warranted given this gap in the literature.
6.3 Study Aims
The aim of this study was to investigate the parenting experiences of mothers and
fathers with an adolescent son with ASD, compared to their experiences of parenting a
NTD adolescent child. In doing so, the study utilized a Family Systems (FS) approach
by involving multiple family members in the research design (i.e., mothers, fathers,
NTD adolescents, and adolescents with ASD) and considering the roles of parents
within the context of the FS. The FS approach offers a suitable conceptual framework
for researching families living with ASD given the complexity and heterogeneity of this
condition and the influence it has on all family members (Johnson, Frenn, Feetham, &
Simpson, 2011; Lozzi-Toscano, 2004). The use of FS approaches also follows calls for
more theoretically driven, family-focused ASD research (Cridland et al., 2013; Jensen &
Spannagel, 2011; Orsmond & Seltzer, 2007).
In investigating the parenting experiences of mothers and fathers with an
adolescent son with ASD, the research aimed to explore both challenging and rewarding
aspects. Additionally, the study aimed to explore how the parenting experiences and
roles undertaken differed between those provided for their adolescent son with ASD
compared to their NTD adolescent son. Third, the study aimed to explore the coping
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strategies used by parents to facilitate coping with the demanding aspects of parenting
an adolescent with ASD.
6.4 Method
Sample
The sample consisted of 26 participants from eight families. This included
mothers (n=8), fathers (n=7), adolescents with ASD (n=7), and adolescent NTD siblings
(n=4). Eligibility criteria for the families included two parents who identify as the
primary caregivers with at least two adolescent children (one NTD individual and one
son 13
with ASD); all family members living at home a minimum of five days per week;
both siblings attending the same school; only one family member formally diagnosed
with ASD; and all family members having knowledge of the ASD diagnosis. In the
sample, all individuals with ASD were formally diagnosed with Asperger’s Syndrome
(AS), which, according to the Diagnostic and Statistical Manual of Mental Disorders
(DSM), fourth edition (APA, 2000) is a form of high functioning Autism 14
.
The criterion of attending mainstream school was established to promote
homogeneity in the sample (i.e., ability to reflect on secondary school experiences and
all adolescents having the level of functioning and adaptive behaviour required to attend
mainstream schooling). The rationale for focusing on males with ASD was based on the
current predominance of males diagnosed with the condition (Holtmann, Bölte, &
Poustka, 2007; Krahn, & Fenton, 2012) and previous recommendations to acknowledge
13 The rationale for focusing on males with ASD was based on the current predominance of males
diagnosed with ASD (Holtmann, Bolte, & Poustka, 2007; Krahn & Fenton, 2012) and previous
recommendations to acknowledge the influence of gender on research findings (Card, Stucky, Sawalani,
& Little, 2008; Cridland, Jones, Caputi, & Magee, 2014a; Hsiao, Tseng, Huang, & Gau, 2013). 14
Given the removal of subcategories within the autism spectrum in the DSM-V (APA, 2013),
participants in this study are referred to as having ASD. However, terms associated with AS (e.g.,
Asperger’s, Aspie) have been retained in direct quotations from participants in order to accurately portray
their comments.
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the influence of gender on research findings (Card, Stucky, Sawalani, & Little, 2008;
Cridland et al., 2014a; Hsiao, Tseng, Huang, & Gau, 2013).
Additional demographic information is presented in Table 6.1.
1 6 8
Table 6.1: Demographic information
Family
identifier
Participating family members Individual
with ASD
age
(years),
gender
Individual
with ASD
school grade
and class
type
NTD
sibling
age
(years),
gender
NTD sibling
school grade/
employment
Parent education level and
employment status
Parent
Ethnicity
Annual
Household
Income Mother Father Individual
with ASD a
NTD b
sibling
Mother Father
Family 1
Yes
Yes
Yes
Yes
14, male
8,
mainstream
classes with
ASD support
unit
16,
female
11, mainstream
classes
University,
Part time
work
Technical
college, Full
time work
Australian /
European $80000
Family 2 Yes Yes Yes Yes 14, male 8,
mainstream
classes
16,
female
10, mainstream
classes
University,
Part time
work
High School,
Part time work
Australian $60000
Family 3 Yes No Yes Yes 15, male 9,
mainstream
classes with
ASD support
unit
17,
female
11, mainstream
classes
Technical
college, Part
time work
Technical
college, Part
time work
Australian /
European
$40000
Family 4 Yes Yes Yes No 13, male 7,
mainstream
classes
14,
female
8, mainstream
classes
University,
Full time
work
Technical
college,
Homemaker
Australian $80000
Family 5 Yes Yes Yes No 12, male 7,
mainstream
classes
18,
male
Trade school University,
Part time
University, Full
time
Australian $90000
Family 6 Yes Yes No No 14, male 8,
mainstream
classes
19,
male
University Technical
college, Part
time work
Technical
college,
Full time work
Australian $70000
Family 7 Yes Yes Yes No 16, male 10,
mainstream
classes
18,
male
Trade School High school,
Part time
work
Technical
College, Full
time work
Australian $80000
Family 8 Yes Yes Yes Yes 15, male 9,
mainstream
classes
17,
male
12, mainstream
classes
University,
Full time
work
University, Full
time work
Australia /
European
>$100000
Note. a Autism Spectrum Disorder
b Neurotypically developing
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Procedure
Ethical approval was granted by the University’s Human Research Ethics Committee
(Appendix L) prior to commencing the participant recruitment process. Participants were
recruited through local secondary schools and community groups by responding to study
advertisements (Appendix P). Following ethical standards for research with children,
written consent was obtained from the participants and their parents (Appendix N). In
order to promote voluntary consent, involvement of all family members was not required
for a family to be eligible for participation.
Semi-structured interviews (Patton, 2002) were conducted to achieve a detailed
understanding of parental experiences when raising an adolescent with ASD without
imposing prescribed categories. The interview guide was developed based on a review of
relevant interview guides used in previous studies (Benderix & Sivberg, 2007; Carrington
& Graham, 2001; Mascha & Boucher, 2006; Vliem, 2009) and through multiple
discussions amongst the research team. Interview questions were generally related to
experiences of being an adolescent with ASD/having an adolescent family member with
ASD (e.g., ‘Do you think being a teenager with ASD/having a teenage family member
with ASD makes you different from other teenagers/families?’, ‘What are some
challenges/positive aspects of being an adolescent with ASD/having an adolescent family
member with ASD?’), with some questions relating specifically to the roles and
responsibilities of parents (e.g., ‘In what ways do you/does your Mum/Dad help your
son/you/your brother?’, ‘Who in your family do you/your adolescent family member with
ASD find helpful in difficult situations?’). A copy of the interview guide is available from
the corresponding author (see Appendix O).
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Based on research recommendations (Cridland, Jones, Caputi, & Magee, 2014b), the
interview guide was pilot tested on one family with an adolescent family member with
ASD 15
. Minor wording changes to questions resulted from pilot testing.
Interviews were conducted based on recommendations outlined in Cridland et al
(2014b [Appendix A]), including conducting interviews with individual participants in a
private space within the family home (e.g., study or quiet living area); conducting
interviews at a preferred time for participants; and conducting interviews at an appropriate
pace to facilitate accurate interpretation of interview questions. Interviews lasted for an
average of approximately 60 minutes (range 40-150 minutes). Interviews were audio
recorded for transcription.
Data Analysis
NVivo (QSR International, 2012), a qualitative data management program, was used
to manage the data. The data were analysed following the inductive coding process
outlined by Braun and Clarke (2006). This process included familiarization with the data
(the primary researcher conducted and transcribed all interviews), generation of initial
codes, collation of codes into potential themes with corresponding quotes, review of
themes with credibility checks, and final coding of themes (Braun & Clarke, 2006).
Credibility checks involved one member of the research team and one independent checker
reading all transcripts with the potential themes identified by the first author. No major
changes to the themes identified by the first author resulted. Consultation amongst the
research team followed and included finalisation of theme descriptions and selection of
most relevant quotes.
15 The interview data from pilot testing was not included in the findings reported in the study.
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This method of credibility checking, also referred to as ‘investigator triangulation’
(Guion, Diehl, & McDonald, 2011), was employed over traditional member checking for
various reasons. More specifically, there were concerns that, despite de-identification of
transcripts, individuals involved in member checking may be able to identify other
participants based on experiences discussed in the interviews. This issue was particularly
pertinent in recognizing other family members’ transcripts. However, this issue was also
relevant for recognition of other participants given the local community within which the
sample was recruited. Associated with this, participant anonymity was important in
obtaining accurate data, whereby participants may have felt reluctant to speak openly in
interviews if there were concerns about being identified through member checking
processes.
In regards to positionality, the co-authors and independent checker had various
backgrounds of involvement with adolescents with ASD including research, clinical, and
familial experiences. Such varying experiences were important in minimising potential
biases in data interpretation (Whittemore, Chase, & Mandle, 2001).
Other strategies employed to enhance the integrity of data analysis included the
first author having prolonged engagement with the data (including interview administration
and transcription) (van den Hoonaard, 2002) and the three methods of bracketing outlined
in Tufford and Newman (2012). Specifically, the bracketing methods included the first
author keeping memos during data collection and analysis as a means of examining and
reflecting on their engagement with the data, the first author engaging in discussions with
an outside source to bring awareness to preconceptions and potential biases, and the first
author keeping a reflexive journal during all stages of the research process to sustain a
reflexive stance (Tufford & Newman, 2012).
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As this was an exploratory study, it was not the aim the achieve data saturation of
all themes. In order to covey the strength of themes, the number of participants who
discussed each point is presented.
6.5 Results
Results are reported according to three key themes; parental roles, the challenging
aspects of parenting an adolescent son with ASD, and the coping strategies used by
parents. Within each theme there are several subthemes, indicated with subheadings. Direct
quotations are presented in indented paragraphs, in which square brackets ([ ]) indicate
information added by the primary researcher for clarification and ellipses (...) indicate
material omitted for conciseness. For purposes of confidentiality, all names have been
changed.
Parental Roles
Clarity of parental roles. When asked, all participants (26/26) were able to identify
which parent they thought was primarily responsible for at least one role in the family.
However, the level of awareness and clarity about such responsibilities varied between
individual participants and families as whole. The division of roles occurred for a range of
reasons such as availability to fulfil a role, or personal characteristics making one parent
more suitable than the other for a specific role:
“I think everyone fills different roles... I’m the one that will fix it, the
practical things. And I’m the cuddler, the nurturer… [His Dad] is
more like a buddy that just takes him away from the situation and
gives him another distraction… [and he is] the joker.” (Mother,
Family 2)
“…he would go to Mum... She’ll give him advice with social things. If
it’s homework, she’ll sit down and do it with him. If it’s computer
things he will go to Dad because he’s the ‘I.T.’ guy...” (Brother,
Family 8)
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“…if Dad was here and Mum wasn’t I’d go to him but if Dad wasn’t
and Mum was I’d go to her, something like that… I mostly go to my
Dad really, because my Mum is always at work.” (Adolescent with
ASD, Family 1)
Functioning of parental roles. Whilst participants identified roles that were
predominantly undertaken by a specific parent, there was also discussion about role
permeability or flexibility; where parents would share or adapt into different roles if
needed:
“Anytime that David [my son with ASD] becomes cranky or illogical,
Peter [his Dad/my husband] doesn’t get it all… [Then] I will
intervene and say, ‘You two are struggling and you need time-out’ and
he does that for me too when I get cranky he will say, ‘Look, you too
aren’t getting on, let’s split it and I will take over.’ So we tag team it a
bit.” (Mother, Family 8)
“[My husband] and I work really well as a team… no-one sits down
and lets the other person do everything, we’re like, ‘I’ll do this and
you do that, I’ll bring the washing in and you can start dinner, I will
go and see who has got homework’, You know? Otherwise we
wouldn’t cope and we wouldn’t be a happy family.” (Mother, Family
7)
Conversely, some participants discussed uneven distribution of roles between parents and
apparent inflexibility within the FS to alter the distribution of roles to a healthier balance.
The implications of one parent being responsible for too many roles included over-
functioning of that parent and feelings of under-appreciation and even burn-out:
“…the support teacher suggested five hours of stuff that I can do to
support my son each day, I don’t think he gets that I work full time
and that I am already stressed out to the max. I do fifty hours a week
at work, I’m doing everything at home, I don’t actually have a lot
more to give. So these ‘helpful’ suggestions are not helpful. I’m
drowning already and already feeling immensely stressed and you
want me to do more?… I’m already at full stretch. I’m doing as much
as I can do. I’m at my wits end...” (Mother, Family 4)
“I’m the organiser and the fixer. I’m sort of a bit of the foreman. I
cook and prepare all the meals. I make sure everyone is organised
and sort of like the secretary/administrator type thing. I pay all the
bills, deal with the finances… I have a lot of the stressful stuff and all
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the organising and keeping everyone on tasks... I am the one who
makes all the decisions so sometimes I would like to share that
responsibility.” (Mother, Family 2)
“It’s generally my instinct to go to Mum for most problems... I tell
Mum what has happened and she will try to help me sort it out.”
(Adolescent with ASD, Family 8)
All parents (15/15) discussed that their various roles and responsibilities in parenting their
adolescent with ASD necessitated a higher level of involvement in comparison to their
roles of parenting their NTD adolescent children:
“It is more hands-on… [in] virtually everything; learning,
behavioural, everything. [For example] even though he knows he has
a shower and does his teeth and that sort of thing, you have to keep
reminding him to do it. He won’t just do it off his own back.” (Father,
Family 5)
“When your children are younger the amount of support and time you
give is a lot and as your children get older you have more and more
freedom. I don’t have as much freedom as the parents who don’t have
a children with AS. A lot more of my time is tied up with him. So I
don’t have much freedom.” (Mother, Family 8)
Specific parental roles. The following themes relate to roles undertaken by the
parents discussed during the interviews. More specifically, the roles identified include
nurturer, advocate, educator, and social co-ordinator.
Nurturer. All families (8/8) discussed the role parents played in providing
emotional support. Being a nurturer was described as a role provided to both their
adolescent children; however, unique aspects regarding providing emotional support to an
adolescent with ASD were noted. These unique aspects included providing nurture for
ASD related issues, sharing of affection more openly, and teaching socially appropriate
ways to show emotions. This nurturing role was discussed as being undertaken by both
parents, however some participants reported that mothers were the primary parent for
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providing emotional support:
“[When Matthew is upset] he would probably find Mum to be the most
helpful because it seems like she’s the one that understands AS most
and would understand him most… I think he would rather Mum
because Mum is Mum… she kind of just helps him talk about it and
breaks it down… and he just opens up to her about things.” (Sister,
Family 1)
“…he’s just very loving and he’s always been loving… Definitely
[more affectionate than my NTD adolescent]! …I don’t mind him
being cuddly… [But] the other day… he grabbed my hand and was
walking along holding it and I’m thinking, ‘You’re as tall as me,
people will think we are dating!’ … I love it but sometimes it’s a bit
hard… I explain that we can be very loving at home but not out in the
public.” (Mother, Family 6)
Advocate. Participants from most families (7/8) discussed various ways parents
advocated for their adolescent son with ASD. Predominant areas of advocacy included
explaining the needs of their son to others and managing misunderstandings at school:
“She’s always on the phone [to the school] saying things like, ‘Yes,
but don’t you realise what he’s like?!’… or maybe he’s done
something wrong at school and he’s in trouble and she might help
calm him down about it and then go to the school and see what can be
done… I’m always ready to go down [to the school]… I hate it when I
hear little bits and pieces that go on. It makes me angry- I want to go
straighten it out, particularly if someone starts picking on him. I hate
that.” (Father, Family 2)
“I am more involved with school, I have to go up there and talk to the
teachers and work out a plan for Adam and how they can help him do
his work.” (Father, Family 4)
Educator. All families (8/8) discussed various ways parents played the role of
educator for their adolescent son with ASD. One key area of education involved that of
social skills development. Many participants discussed how parents had provided this role
for their son with ASD since childhood, however noted that it had become more complex
due to the social expectations of adolescent functioning. In our sample, educator roles were
undertaken by both mothers and fathers:
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“…we went through a stage where he was touching himself… we had
to talk about when and where you do those things… I just sort of said
it was a normal thing but private and talked about how it might make
other people feel uncomfortable if you do it in front of other people…
And he is fine with that. He’s pretty good like that- if you explain the
rules of society to him and he understands it then he will just adjust.”
(Mother, Family 8)
“Occasionally I have had to pull Adam aside and explain some type of
social nuance that he hasn’t understood… suddenly the expansion of
his world into high school [has been] difficult for all of us I feel... You
have to break down every single step of every single process… You
have to be prepared to go into yourself and figure out why we do these
things…” (Father, Family 4)
“[Dad understands me because] if I’ve done something wrong he
doesn’t go off at me. Most of the time he explains what I have done
wrong and how to do it...” (Adolescent with ASD, Family 3)
A second area of education involved helping their adolescent son with ASD with school
work. This role ranged from encouraging their son to do their homework to sitting down
with their son and helping them with specific activities. Related to this, many of the
families (5/8) highlighted homework to be one of their biggest daily challenges:
“When he’s given any homework that’s an issue for him because
school is school and home is free time and play time… He doesn’t
believe he should have to do anything at home!… [With homework we
help by] pointing him in the right direction because they can go off on
the wrong tangent very easily.” (Father, Family 1)
“Usually for stuff like with homework and stuff I usually just go to
Mum or my older sister… It’s pretty helpful- I still don’t really like it
but it helps.” (Adolescent with ASD, Family 2)
“With homework Mum and Dad tend to do a lot of helping. Like they
used to help me… but they help in a different way like if they helped
me with maths homework it was because I was saying, ‘I don’t
understand this, can you help me?’, whereas for him its making sure
he does it and making sure he doesn’t get distracted.” (Brother,
Family 8)
Social Co-ordinator. Many of the parents (11/15) discussed the importance of
organising and monitoring social activities for their adolescent son with ASD, compared to
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their NTD adolescent. Discussions indicated this role entailed organising appropriate social
activities, monitoring during the activity, and managing any negative outcomes:
“I do a lot more different things than a normal Mum would do
probably. Like for example he went to a friend’s house… and I had to
ask a lot of questions about where it was, who was going to be there,
are they going to be supervised, and all that. Whereas a normal Mum
would just say, ‘Well as long as you are going to drop them off and
pick them up!’... if it was Christie [my NTD adolescent daughter] I
wouldn’t be like that.” (Mother, Family 3)
“…other teenagers would just call their friends, tell them to come
over and then go down to the beach, it’s just not as easy for Matt…
It’s always a fight when he wants to go somewhere… [such as] the
mall because I know that’s not a good place for him… it’s like they’re
still in primary school in their head but they want independence and
stuff too.” (Mother, Family 1)
Associated with the role of social co-ordinator was a need to motivate their son to
participate in social activities. Reasons for motivating their son to be involved in social
activities included social learning opportunities, preparation for the future, and
opportunities for new experiences. Some parents contrasted this responsibility with their
experience of parenting their NTD adolescent, who did not need such motivation:
“He would prefer to stay at home and I’m the one pushing him to go
to social club… because otherwise he would probably just sit on his
computer… we’ve just tried to make him happy and we’ve tried to
encourage him to do different things… We have to prepare him for the
future…” (Mother, Family 7)
“I think a really big decision we had to make was how we were going
to deal with his desire to live a reclusive life. If we let him he would
spend every moment on the computer or in his room. We don’t want
that for him but seeing him struggle with the world is something we
also don’t want. So on the one hand he can stay in his room and live a
dysfunctional life, but he’s happy, or we can encourage him to live in
the world and have friends and a future. But with that also comes
heartache.” (Father, Family 4)
Challenging aspects of parenting an adolescent with ASD
Puberty. A range of issues associated with puberty were highlighted as challenges to
be managed during this period. Specific issues included managing strong adolescent
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emotions, implications of their son’s increasing physical size, their son’s confusion about
bodily changes which sometimes resulted in socially inappropriate behaviour, and
difficulties adjusting to the increasingly complex hygiene routines associated with
adolescence:
“He wants to show me anywhere and at any-time that he has pubic
hair. He doesn’t understand that you can’t do that sort of thing in
public… It’s more complicated than it was with my other boys …like
other kids tend to know that that’s not socially appropriate by that
age…” (Mother, Family 5)
“…getting him to wear to wear deodorant [is a challenge]… Unless
you’re on his back constantly it doesn’t happen…. So I’m just trying
to say it every day and if I keep saying it then maybe one day he’ll do
it himself… I think that’s part of his Autism.” (Mother, Family 6)
“He gets frustrated, he gets upset, he gets angry. Sometimes he gets
angry and he doesn’t know why he is angry… and no matter what I
say to him he takes any criticism of his behaviour as me being angry
at him… I’m just trying to help.” (Mother, Family 2)
“I think that he is realising his strength and that he is getting bigger
and that he thinks he can do what he wants because he is getting older
and going through puberty …it used to be that Mum could restrain
him and hold him back if he is punching or whatever but now it has to
take three of us to hold him because he is that strong…” (Sister,
Family 3)
Judgemental society. Many parents (11/15) discussed experiences where they or
their partner had felt negatively judged due to their son’s behaviour. Areas of most concern
included feeling scrutinised by professionals (e.g., teachers and health practitioners) and
members of the public. Further, parents felt these experiences were becoming worse as
people were less accepting of socially inappropriate behaviour displayed by an adolescent
compared to a younger child:
“People really do judge you... you feel like you’re being scrutinised
over everything… [and] when they’re little, people might think it’s
cute, but it’s not cute when they don’t grow out of it! ... I feel people’s
judgements come back onto me that I’m a bad mother.” (Mother,
Family 7)
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“…today at the doctor he was showing me how to talk to Ken and
address how he must be feeling and just think, ‘Um, I know!’ But it
[also] makes me start doubting myself.” (Mother, Family 5)
“…we went to the aquarium… [and he] smacked his head on the glass
and he’s screamed and yelled out, ‘Argh f***, me head!’ And he
started having a go at me then… And that is just embarrassing
because here’s your kid swearing… [and] it makes it harder for us
because he’s not little anymore.” (Father, Family 5)
Ongoing ‘grief’ process. Some parents (7/15) discussed an ongoing process of
adjustment with being the parent of an individual with ASD, which had continued into
adolescence. The most common term used by parents to describe this process was
‘grieving’. Salient aspects of this process during adolescence included worrying about the
future (i.e., being able to financially support their child into adulthood) and coping with the
psychological and physical demands of parenting an adolescent with ASD:
“You do go through grieving and I think there are still a lot of times
when you want him to fit into the mainstream stuff and it’s mostly for
his own wellbeing, like it would make his life easier. And it’s hard
enough as it is to go through teenage years with your kids but going
through them with Asperger’s as well just adds another layer and
makes it just that much harder. Like you worry how he’s going with
high school and you’re looking towards the future all the time…
There’s that constant worry, like initially when he got diagnosed it
was all about figuring out ways to make him happy but now it’s all
figuring out ways to improve his future.” (Mother, Family 5)
“I’m an emotional person so I will come out here and bawl at Roger. I
will cry about, ‘Why did this happen to our baby?’ and ‘Why is this so
unfair?’ It is grief… And with teenage years there are changes all the
time and you think, ‘Oh God, this is not what I wanted for him’ but I
just try to hope…” (Mother, Family 7)
Strategies for coping
‘Taking a break’. The coping strategy most frequently discussed by parents
(10/15) was having ‘taking a break’. This strategy generally involved having time to
oneself to recuperate and/or to engage in an enjoyable activity. The implementation of this
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strategy ranged from organised weekly activities to ‘in the moment’ separation from a
frustrating situation:
“For me I just need to take some time out. Just time away, it might be
just watching TV or leaving the room and doing something else to get
some separation.” (Father, Family 7)
“I don’t have a huge amount of spare time and when I do, I mainly
just take time out and read and relax... I just shut myself away from
everyone else and be alone…” (Father, Family 2)
Whilst acknowledging the importance of taking time for themselves, some parents
described feeling guilty for doing so and/or felt if they took ‘time-off’ it would adversely
impact other responsibilities. Notably, mothers more frequently discussed feelings of guilt
compared to fathers:
“I don’t have much spare time. I like to read detective stories but
more often I listen to them on audiobooks so I can do the housework
at the same time. [If I had a day off] I’d probably choose to reduce my
stress levels by working.” (Mother, Family 4)
“[I enjoy] sewing, reading, cooking, just being calm. I can’t
remember the last time I was alone but I like that too... [But if I get
‘alone time’] I usually feel guilty and then end up cleaning up the
house anyway. I can never really relax, there’s always catching up on
chores to do.” (Mother, Family 5)
Time with partner. Spending quality time with their partner was identified as a
coping strategy by the majority of parents (9/15). Some parents felt they had more
opportunity to do so now that their child with ASD was old enough to stay at home by
themselves:
“It has been over the last year I suppose that we have felt pretty
comfortable leaving David at home… it sort of frees us up to go and
do something and we don’t have to organise someone to look after
him while we go to the shops for example…. It gets us back to when
we were first married and able to do all these things on our own...”
(Father, Family 8)
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“I like it when we go for walks and just being able to sit quietly
without any interruptions. It’s few and far between but I like that. I
just like hanging out with her.” (Father, Family 2)
Confiding in someone. Confiding about the challenges of parenting an adolescent
son with ASD was discussed by many parents (8/15). The majority of these parents said
they confided in their partners. However, others reported that they found other family
and/or close friends more helpful. Confiding in someone was found most helpful when the
person listened and offered a supportive attitude. It was deemed unhelpful when
participants felt judged or when the confidant tried to ‘take-over’. Participants expressed
mixed opinions towards the efficacy of being offered strategies or advice; with some
finding advice helpful and others finding it frustrating:
“My best-friends [help me]… They ask me questions which put me
back into problem solving and coming up with strategies to solve the
situation.” (Mother, Family 8)
“[I go to my husband]… He’s just there for me and we’ll both work
off each other… Or when I get real down he’ll say something like,
‘He’s not dying, we’ll get through this. He’s always got us, he’ll be
right.’ And you go, ‘Yeah, yeah, you’re right! I’ll make sure he’s
alright’.” (Mother, Family 7)
“I tend not to talk to John [my husband] about it because he’ll just get
angry and be unhelpful… [But] sometimes I do need to talk about it
and let it out…I tend to talk to Mum but she sort of gets a bit, ‘Oh
well, maybe your Father and I should come… [to help]’ [My best-
friend is] good because she listens… and she lets me vent and that’s
all I want.” (Mother, Family 2)
Involvement in an ASD support group. Being involved in an ASD support group
was a coping strategy identified by some parents (6/15). Reasons ASD support groups
were deemed helpful included learning behaviour management strategies, providing a
social outlet for their son, and receiving emotional and practical support from other parents
of adolescents with ASD:
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“It [the ASD support group] has been really good… I was able to tell
them about his major meltdown and you pick up different things about
what works and different supports… It’s been great for Ben as well
because he can be himself and he can use his big words and the other
kids don’t look at him funny because they all understand him and they
can have a conversation with him and they’re not thinking he is
strange.” (Mother, Family 6)
“…meeting with the [ASD support] group has been helpful and makes
me put things in perspective… [Its] a place where you know the kids
are being looked after by professionals and so the parents can talk
without worrying. It’s where you can vent in a safe environment with
like-minded people… I think he [my husband] probably found it a lot
harder initially to understand the whole thing [regarding ASD], until
he started going to the parent’s social club and he could see that the
other parents were going through the same things and it made him see
that it was real.” (Mother, Family 5)
Use of humour. Humour was discussed by many parents (8/15) as a way of
managing challenging situations, dealing with personal frustrations, and/or bonding with
their son with ASD. Notably, in the families who discussed this strategy, humour was used
predominantly by fathers:
“[To help in challenging situations] I kind of try and make light of
it… I hope it is [helpful]. I don’t know, you try not to be cranky with
him because you know how bad the frustration can get… [And making
jokes] will kind of cover me from getting cranky with him too…”
(Father, Family 2)
“They get on like brothers… because they both throw the sarcasm
back at each other and play tit for tat. They do muck around and have
a wrestle and what-not.” (Mother, Family 6)
Parental reflections
Throughout the interviews most parents (12/15) described an accepting and/or
positive attitude they had developed towards being the parent of a child with ASD. Parents
discussed how these attitudes had helped them cope with the various challenging aspects of
parenting an adolescent with ASD. Further, several parents (7/15) discussed how their
positive attitude had developed over time:
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“I’m probably more at ease now because you sort of know what is
going on. I’ve got more understanding of things that have happened
like with his behaviour or the way that he is.” (Father, Family 5)
“Yes there are certain particular challenges [in parenting an
adolescent with ASD] but does it necessarily mean we are a whole lot
worse off than other families? I’d say no, we are just different…”
(Mother, Family 4)
“It’s better [now] because we’ve grown with him and have that
understanding and awareness of it… if anyone has a problem then it’s
their issue. That’s the way I’ve looked at it.” (Mother, Family 1)
“David is my gift- he really makes me change the way I see the world.
I just wish he would mellow a little bit and get through these next few
years quickly!” (Mother, Family 8)
Parents were also given the opportunity to discuss things they ‘wish they knew’ as their
child was transitioning into adolescence and ‘advice’ they would provide to other parents
and clinicians. Their ‘advice’ ranged from ways to understand and interact with their
adolescent with ASD to self-care strategies. Additionally, advice covered a range of the
parental roles discussed earlier such as being available to provide nurturance and emotional
support to their adolescent son with ASD:
“My advice to younger families would be enjoy the quirkier aspects of
AS because some people can be so caught up on ‘normal’…
Expectations of normal and that you should be doing certain things
and [that] your son should be doing certain things should be avoided
like the plague.” (Mother, Family 4)
“I know from my other kids and my other experiences that there is a
lot of teenage interplay with these years, regardless of the AS. Don’t
think that it is all AS; there are hormones raging around on top of
everything else.” (Mother, Family 7)
“…listen to him and show that you’re listening to him because they
need that I think…” (Father, Family 1)
“Take each day as it comes and deal with the problems as they come
along. Just be there for them and talk to them and it might be a rocky
road but just support them as best you can…” (Mother, Family 6)
“It’s all just about learning. You just have to adapt. But everyone is
different in the way they adapt. And it’s all just about tolerance. It’s
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all a learning experience like how to react and how he will react in
different situations…” (Father, Family 6)
“Just try to spend as much time as much with them because they are
not teenagers for long and these years are crucial- they need
guidance.” (Father, Family 7)
6.6 Discussion
This study investigated the experiences of parents with a NTD adolescent and an
adolescent with ASD, with a particular focus on parental roles and responsibilities, the
challenging aspects, and the coping strategies used by parents. Interviews were conducted
with mothers, fathers, NTD adolescents, and adolescents with ASD from eight families.
Investigating the parenting roles and responsibilities involved in raising an adolescent with
ASD is important in enhancing our understanding of how families living with ASD
function. Additionally, understanding parenting roles and responsibilities in this context is
important in being able to provide clinical support services to these families.
Parental roles
Various parenting roles were identified by the participants, including Nurturer,
Advocate, Educator, and Social Co-Ordinator. According to FS approaches, some of these
parenting roles are common to most families, such as providing nurturance, advocacy, and
education (Becvar & Becvar, 1982; Bowen & Kerr, 1988; Carter, 1980). Other identified
roles seemed to be unique to parenting an adolescent with ASD, such as organising and
motivating their son to be involved in social activities. Additionally, there were unique
components to some of the more common parenting roles. For example, teaching of
socially appropriate behaviour is a significant role undertaken by parents of NTD children,
however is generally of less importance during adolescence (Fong et al., 1993; Howard et
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al., 2006). This is in contrast to parents of adolescents with ASD, for whom this role
remains salient as their children develop into adolescence.
Traditionally, the allocation of parenting roles is seen as being based on gender
roles, with mothers typically understood to provide expressive support (emotional and
affective support), and fathers to provide instrumental support (practical, hands-on support)
(Pickhardt, 2007; Seligman & Darling, 2007). In this sample, there was some evidence of
role allocation based on traditional gender roles; as mothers were predominantly identified
to fulfil expressive support needs (i.e., role of Nurturer). However, both parents were
identified as providing instrumental support, such as advocacy, education, and co-
ordination of social activities. Other forms of instrumental support (e.g., financial support)
were not discussed by participants, so it is unclear whether they followed traditional gender
roles. However, the applicability of understanding role allocation based on traditional
gender roles may be limited as contemporary gender roles are generally more flexible
(Pickhardt, 2007). This is evident in the current sample, as mothers in two families were
identified to be the primary earners.
Clarity around role responsibilities may be a more valid indicator of family
functioning than traditional gender role allocation. Following this, all participants were
able to identify at least one parenting role fulfilled predominantly by one particular parent.
The ability to identify role responsibility can be considered an indication of positive
parental role clarity in all eight families. It may be that the clarity of parental role
responsibilities is of heightened importance in families living with ASD given the demands
of having a family member with ASD. Further investigation into this issue is warranted.
Role dispersion is another component of role functioning. According to FS
approaches, dispersion of roles is considered positive when roles are perceived to be shared
fairly between family members (Bowen, 1978, 1995; Bowen & Kerr, 1988). ‘Fair’
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dispersion of parenting roles is considered when both parents feel they have an appropriate
responsibility load, rather than an objective measure of role dispersion (Bowen, 1995). In
our study, a degree of dispersion of parenting roles was evident in all families; however,
some participants perceived ‘unfair’ distribution of some parental responsibilities. For
example, in Family 4, the mother identified that she was the primary earner as well as
being responsible for the majority of care for her adolescent son with ASD. Discussions
indicated that the mother felt under-appreciated and burnt-out in fulfilling her roles at both
home and work. The interview with the father in Family 4 indicated that he felt helpless
regarding how to adequately assist his wife, and as a result had withdrawn from some of
his roles within the FS. The literature indicates that this ‘disconnect’ is a common
relationship pattern that can develop in parents raising a child with a disability (Morgan,
1988; Seligman & Darling, 2007). That is, one parent withdraws (physically, emotionally,
or psychologically) from the FS when feeling overwhelmed, leaving the other parent with a
greater burden of care, which results in them ‘overfunctioning’ in their parenting roles
(Morgan, 1988; Seligman & Darling, 2007). Research indicates that mothers of children
with ASD who work may be particularly vulnerable to ‘overfunctioning’ in their parenting
roles (Smith et al., 2010).
Inherent to understanding family roles within a FS framework is the recognition that
families are fluid systems, and thus able to change. The dynamics of a negatively
functioning FS do not have to stay static; rather they can change into a more positively
functioning system for all family members. Identifying common patterns in functioning in
families living with ASD may guide the development of clinical interventions to assist
families in developing positively a functioning FS. Findings from this study indicate that
fair dispersion of roles is an important component of family functioning. From this, a
useful component of clinical interventions may involve assessing the dispersion of
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parenting roles and providing strategies to adjust the role distributions if deemed necessary
by the family.
Positive and challenging aspects of parenting an adolescent with ASD
The main challenges of parenting an adolescent with ASD identified in this study
were associated with puberty. More specifically, these included managing their son’s
strong emotions, increasing physical size, and bodily changes. Behavioural difficulties,
such as temper tantrums, aggression, self-abusive behaviours, and impulsive self-
stimulatory behaviours, have been identified as major challenges for parents of adolescents
with ASD (Fong et al., 1993). Further, as in our sample, the adolescents’ increasing
physical size has been identified as a key factor leading to greater difficulty managing their
behaviour (Fong et al., 1993). Consequently, some participants felt that they received more
negative judgement by others with the increasing age of their son. This may be because
society is less tolerant of socially inappropriate behaviour displayed by an adolescent
compared to a younger child.
Despite the many challenges of parenting an adolescent with ASD, some parents
mentioned positive aspects, such as humorous incidents and sharing of affection.
Additionally, the majority of parents conveyed accepting, and at times positive, attitudes
towards being the parent of an individual with ASD. These adaptive attitudes appeared to
be facilitated by a greater understanding of ASD, positive construal of challenges, and
recognition of positive aspects of ASD in general. In line with this, the literature
acknowledges a positive shift in parents’ attitudes towards having a child with ASD that
often occurs over time (Altiere & von Kluge, 2009; Fong et al., 1993; Hines, Balandin, &
Togher, 2012). Despite these positive attitudes, the majority of the interviews were
dominated by discussion of the challenging aspects of parenting an adolescent with ASD.
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Related to this, parents discussed an ongoing process of adjustment, which some
referred to as ‘grieving’, associated with being the parent of an individual with ASD. In the
literature, this experience has been referred to as Ambiguous Loss, which is complicated or
unclear loss occurring when a person is physically present yet psychologically absent or
different (Boss, 1999, 2004; O’Brien, 2007). Ambiguous Loss has been acknowledged to
occur in some families living with ASD during the diagnostic process (Cridland, Jones,
Magee, & Caputi, 2013; O’Brien, 2007; Solomon & Chung, 2012). However, to our
knowledge, Ambiguous Loss has not been recognised to continue into adolescence.
We posit that the experience of Ambiguous Loss may be an ongoing process for
families living with ASD and may re-emerge as new developmental periods uncover new
issues to be processed. In our sample, issues to be processed inherent to adolescence
included coping with the psychological and physical demands of adolescence, such as
puberty related issues, and uncertainty about how to best support their adolescent into
adulthood. Importantly, we posit that the re-emergence of feelings of Ambiguous Loss
during this adolescence may limit parents’ opportunities to acknowledge the positive
aspects of ASD during this period.
Coping strategies used by parents of adolescents with ASD
A range of coping strategies were discussed by parents, including having time to
themselves, spending time with their partner, confiding in their partner or significant other,
and attending ASD support groups. Most parents discussed using a range of coping
strategies, even if they identified relying more on some strategies over others. This finding
is in line with literature which proposes that different coping strategies provide different
types of support. More specifically, spousal support is considered to provide emotional and
practical assistance (Altiere & von Kluge, 2009; Fong et al., 1993; Heiman & Berger,
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2007; Rao & Beidel, 2009; Sivberg, 2002; Solomon & Chung, 2012; Weiss, 2002);
whereas ASD support groups are said to provide formal (e.g., information), informal (e.g.,
friendship, emotional support), and practical (e.g., respite, financial services) support
(Altiere & von Kluge, 2009; Luther, Canham, & Cureton, 2005; Phelps et al., 2009; Rivers
& Stoneman, 2003; Seligman & Darling, 2007).
The coping strategies identified by participants are consistent with the common
strategies recognised in the research literature by parents of younger children with ASD
(Bradford, 2010; Gupta & Singhal, 2005; Higgins, Bailey, & Pearce, 2005; Luther et al.,
2005). However, the findings of this study may be considered pertinent because they
establish that parents of adolescents with ASD also find these common coping strategies
useful; findings which have previously not been recognised. For example, Beresford
(1994) posited that the importance of support groups may decrease with the increasing age
of the child with ASD because parents develop greater understanding of ASD over time.
The results of this study, however, indicate that support groups remain an important coping
strategy for parents with adolescent children with ASD.
Despite the range of strategies identified by parents, some parents reported feeling
guilty for adopting coping strategies (such as taking time for themselves) because they felt
these activities decreased their availability to complete parental or work responsibilities.
Solomon and Chung (2012) state that parental feelings of guilt when undertaking self-care
activities are common in parents of children with ASD; they highlight the need for
clinicians to coach parents into participating in self-care activities in order to reduce carer
fatigue and increase resilience and general wellbeing. The increased opportunities to leave
their adolescent with ASD at home, as discussed by parents in this study, may be used as a
factor to coach parents into participating in coping strategies.
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6.7 Strengths and limitations
A primary strength of this study was the involvement of multiple family members,
including mothers, fathers, and adolescent children within a FS framework. This inclusive
aspect of the methodology allowed for a multifaceted investigation, which is suitable for
increasing our understanding of complex family issues (Bayat, 2007; Dew et al., 2008;
King et al., 2006). The use of a qualitative methodology may also be considered a strength
of the study, as there is currently a dearth of literature incorporating the direct perspectives
of individuals with ASD and their families (Carrington, Templeton, & Papinczak, 2003;
Cridland et al., 2013; Fong, Wilgosh, & Sobsey, 1993; Vliem, 2009). However, future
investigations may benefit from utilizing mixed method approaches in order to quantify
some of the findings of this study, such as the relative proportion of parental time devoted
to caring for their adolescent with ASD compared to a NTD adolescent.
This study utilised a homogeneous sample of two-parent families with both an
adolescent son with ASD and a NTD adolescent. The sample was also relatively
homogeneous in terms of racial and socio-economic backgrounds. Whilst the homogeneity
of the sample may limit the generalizability of findings to other families (for example it is
unclear how relevant the findings are for families with multiple adolescents with ASD,
with a daughter with ASD, or for sole parent families), the benefits of the specific sample
warrant its use. First, the specific sample allowed for the roles of parenting an adolescent
with ASD to be recognised, which is not suited to a broad, large scale study (Ma, 2000;
Potter & Hepburn, 2005). Second, parents in this sample were unique in their ability to
reflect on the differing parenting roles required for both a NTD adolescent and an
adolescent son with ASD.
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6.8 Conclusion
Understanding of the unique issues for parents of adolescents with ASD is critical for
providing effective clinical support services (Nealy, O'Hare, Powers, & Swick, 2012). The
results of this study suggest many possible directions for such services, including
assessment of roles and their impact on family functioning, psycho-education for families
with prepubescent sons with ASD regarding common adolescent-related challenges,
strengths based programs to facilitate greater recognition of the positive aspects of ASD,
and the importance of both formal and informal social supports for parents of adolescents
with ASD. The most efficacious clinical support services are likely to have an integrative
approach which allows for the complex interrelations amongst issues within the FS to be
recognised (Solomon & Chung, 2012).
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CHAPTER 7: FAMILIES LIVING WITH AUTISM SPECTRUM DISORDER:
ROLES AND RESPONSIBILITIES OF ADOLESCENT SISTERS
Cridland, E.K., Jones, S.C., Stoyles, G., Caputi, P., & Magee, C.A. (accepted November
2014). Families living with autism spectrum disorder: Roles and responsibilities of
adolescent sisters. Focus on Autism and Other Developmental Disabilities.
7.1 Abstract
There is currently a limited understanding of adolescent sibling relationships
where an Autism Spectrum Disorder (ASD) is present. This research gap
remains despite preliminary findings suggesting that neurotypically
developing (NTD) siblings undertake extra care-giving responsibilities and
experience differential treatment from family members. Using a Family
Systems approach, this qualitative study investigated NTD adolescent sisters’
roles and responsibilities for their younger adolescent brother with ASD from
the perspectives of 11 family members (including NTD sisters, brothers with
ASD, mothers, and fathers). Findings indicate the sisters undertook various
care-giving roles and responsibilities, particularly at school, which had both
positive and negative influences on the family system. Additionally, sisters
perceived they undertook unfair household responsibilities, received reduced
parental attention, and desired both distance from and engagement with their
families. These perceptions varied amongst other family members.
Implications of these findings and potential strategies for best supporting
adolescent NTD siblings are discussed.
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Families Living with Autism Spectrum Disorder:
Roles and Responsibilities of Adolescent Sisters
7.2 Introduction
Each family has its own pattern of functioning; with varying degrees of emotional
closeness, cognitive engagement, physical health habits, social connectedness,
communication styles, and expectations of others (Bowen, 1995; Bowen & Kerr, 1988;
Carrillo, 2012). Each family also has a unique distribution of family roles and
responsibilities amongst its members (Bowen, 1995; Whitchurch & Constantine, 1993).
Despite this heterogeneity, there are common factors regarding the functioning of roles and
responsibilities inherit to most family systems (FS). For example, roles considered
necessary for most families include provision of emotional, financial, and practical
supports (Becvar & Becvar, 1982; Bowen & Kerr, 1988; Carter & McGoldrick, 1980).
Additionally, in most families, parents undertake greater caregiving and household
responsibilities than children (Bowen, 1995; Francis, 2001). There are also various
elements by which the functioning of roles and responsibilities are generally evaluated,
such as the degree to which family members consider the distribution of roles and
responsibilities to be fair, the level of flexibility in role distribution given changes in the
FS, and level of clarity about the requirements of each role (Davis & Gavidia-Payne, 2009;
Whitchurch & Constantine, 1993).
A range of factors can influence the functioning of roles and responsibilities in a FS,
such as disability, chronic illness, parenting style, family dynamics, and culture (Bowen,
1995; Ferrari & Sussman, 1987; Seligman & Darling, 2007). For families living with
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Autism Spectrum Disorder 16
(ASD), family roles and responsibilities may be influenced by
the increased time-demands required for basic caregiving duties for the individual with
ASD, such as meal preparation, toileting, and hygiene routines. Further caregiving duties
include increased working hours due to financial costs of ASD related services and
increased travel times required for specialty education and vocational services (Attwood,
2007; Heiman & Berger, 2007; Macks & Reeve, 2007; Pakenham, Samios, & Sofronoff,
2005). Given the pervasive influence FS having a family member with ASD has on the FS,
these families can be referred to as families living with ASD (Cridland, Jones, Magee, &
Caputi, 2013; Neely-Barnes, Hall, Roberts, & Graff, 2011).
Regarding the roles and responsibilities undertaken by neurotypically developing
(NTD) siblings in families living with ASD, research indicates these individuals often
undertake significant care-giving responsibilities and in-turn receive reduced parental
support (Benderix, & Sivberg, 2007; Carrillo, 2012; Dellve, Cernerud, & Hallberg, 2000;
Dyson, 1999). This pattern of role functioning has been referred to as ‘parentification’
(Bowen, 1995), and is considered to be particularly prone for older siblings in families
living with ASD (Morgan, 1988; Seligman & Darling, 2007). Reasons contributing to
siblings of individuals with ASD undertaking parentified roles may include siblings’
heightened awareness of the care-giving demands placed on parents, as well as siblings’
increased capability of undertaking greater household duties (Benderix & Sivberg, 2007;
Seligman & Darling, 2007).
The impact of these roles and responsibilities on siblings’ wellbeing remains
inconclusive; with some research reporting negative effects (Macks & Reeve, 2007;
Orsmond & Seltzer, 2007, 2009; Petalas, Hastings, Nash, Lloyd, & Dowey, 2009;
16 Individuals with ASD experience persistent deficits in social communication and social interaction, and
restricted, repetitive patterns of behaviour, interests, or activities (American Psychiatric Association, [APA],
2013).
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Schuntermann, 2009). Other research indicates no negative effects (Kaminsky & Dewey,
2001, 2002; Pilowsky, Yirmiya, Doppelt, Gross-Tsur, & Shalev, 2004). Still further
research suggests that level of understanding and acceptance of ASD may mediate the
influence of additional caretaking duties (Carrillo, 2012; Dellve et al., 2000; Moyson &
Roeyers, 2012). For example, Dellve et al. (2000) reported that, despite significant
caregiving demands, the majority of adolescent siblings described a sense of responsibility
toward their brother which had developed due to an increased level of understanding and
acceptance of their brother’s condition. Similarly, a retrospective study of NTD adult
siblings reported that 50% of siblings identified positive influences of having a brother
with ASD which were not recognised during childhood (Carrillo, 2012). Strong peer
friendships may be another mediating factor facilitating positive coping in siblings during
adolescence (Macks & Reeve, 2007; Orsmond & Seltzer, 2007).
There are several reasons warranting investigation of the roles and responsibilities
undertaken by NTD adolescent siblings who have an adolescent sibling with ASD. First,
the majority of existing research has focused on childhood samples (Carrillo, 2012;
Petalas, Hastings, Nash, Reilly, & Dowey, 2012; Vliem, 2009), despite consensus that
sibling roles and responsibilities change from childhood to adolescence (Fulmer, Medalie,
& Lord, 1982; Henry, 1994; Turnbull, Summers, & Brotherson, 1984). Second, research
has investigated sibling experiences at school and home separately (Benderix & Sivberg,
2007; Hodapp, Glidden, & Kaiser, 2005; Kaminsky & Dewey, 2001; Mascha & Boucher,
2006; Moyson & Roeyers, 2012). However, to our knowledge, no research has considered
these domains in conjunction with each other. Third, it remains unclear how to best support
adolescent NTD siblings of individuals with ASD (Petalas et al., 2012; Vliem, 2009),
particularly regarding the caregiving roles they provide for their sibling with ASD. This
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study aims to investigate ways to support these individuals, from the perspectives of the
adolescent NTD siblings themselves, and their families.
The present study investigates the experiences of adolescent girls with a younger,
adolescent brother with ASD, paying particular attention to the roles and responsibilities
they undertake at school and home. Based on the existing literature, it is expected that
NTD adolescent sisters will undertake a range of family roles and responsibilities, which
may indicate elements of parentification 17
. Further, it is anticipated that some of these roles
will be associated specifically with their brother with ASD. Moreover, it is anticipated that
roles will be undertaken both at home and school. However, given the dearth of literature
considering sibling roles at home and school, the way both roles interact is unknown.
This study further investigates adolescent sisters’ roles from the perspectives of
multiple family members, in order to gain a multifaceted and holistic understanding of
family functioning. Based on previous literature, it is hypothesised that the perceptions of
family members will vary (Guite, Lobato, Kao, & Plante, 2004; Phelps, McCammon,
Wuensch, & Golden, 2009b; Smith et al., 2010). However, the nature and extent to which
family members’ perspectives vary, regarding adolescent sisters’ family roles and
responsibilities, remains unclear.
7.2 Method
Sample
A specific sample was recruited in recognition of the influence of sample
characteristics on research findings (Kaminsky & Dewey, 2002; Meadon & Stoner, 2010;
Orsmond & Seltzer, 2007; Rao & Beidel, 2009). More specifically, participants included
NTD adolescent sisters, adolescent brothers with ASD, mothers, and fathers.
17 Research hypotheses are alternatively worded as research aims in Appendix V, Section 4.
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Eligibility criteria for the NTD sibling included being female, attending mainstream
schooling in Grades 8-11 (age range 12-17 years), and being older than their brother with
ASD. The rationale for focusing specifically on sisters who were older than their sibling
was based on preliminary research indicating siblings who are female and older than their
sibling with ASD may be particularly vulnerable to undertaking parentified roles and may
experience higher emotional sensitivity and social isolation (Hastings, 2003; Kaminsky &
Dewey, 2002; Macks & Reeve, 2007; Orsmond & Seltzer, 2009; Stoneman, 2005; Verte,
Roeyers, & Buysse, 2003).
Eligibility criteria for the brother with ASD included having a formal diagnosis of
ASD 18
, attending mainstream schooling in Grades 7-10 and being the only family member
with a formal ASD diagnosis. The rationale for focusing on brothers with ASD was based
on the current predominance of males diagnosed with ASD (Holtmann, Bölte, & Poustka,
2007; Krahn, & Fenton, 2012) and previous recommendations to acknowledge the
influence of gender on research findings (Card, Stucky, Sawalani, & Little, 2008; Cridland,
Jones, Caputi, & Magee, 2014a; Hsiao, Tseng, Huang, & Gau, 2013).
Other eligibility criteria included families with two parents who identified
themselves as the primary caregivers, all family members living at home a minimum of
five days per week, and all family members having knowledge of the ASD diagnosis. The
final sample consisted of 11 participants from three families (three adolescent with ASD,
three NTD adolescent sisters, three mothers, and two fathers). More detailed demographic
information is presented in Table 7.1.
18 All participants had received a formal diagnosis of Asperger’s Syndrome from either a paediatrician or
psychologist based on ASD criteria in the DSM-IV (APA, 2000). Given the classification changes in the
DSM-V (APA, 2013), these diagnoses are referred to here as ASD.
2 0 7
Table 7.1: Demographic information
Family number Individual with ASD a
age / school Grade
NTD b sister age / school
Grade
Parent interviewed Family Ethnicity Annual Household
income
1 Age 15 / 9 th
Grade
mainstream classes
Age 17 / 11 th
Grade
mainstream classes
Mother and Father
Australian $60000
2 Age 15 / 9 th
Grade
mainstream classes
with ASD support
unit
Age 16 / 10 th
Grade
mainstream classes
Mother and Father
Australian/Irish $80000
3 Age 13 / 7 th
Grade
mainstream classes
with ASD support
unit
Age 16 / 10 th
Grade
mainstream classes
Mother
Australian $40000
a Autism Spectrum Disorder
b Neurotypically developing
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Procedure
Ethical approval was granted by the University’s Human Research Ethics
Committee (Appendix L) prior to commencing the participant recruitment process.
Participants were recruited through local secondary schools and community groups. The
broad research aims were explained to eligible participants in an information sheet
(Appendix M) and an introductory meeting with the first author. Following ethical
standards for research with children, written consent (Appendix N) was obtained from both
the participants and their parents. More specifically, following guidelines for conducting
qualitative research with individuals with ASD and their families (Cridland, Jones, Caputi,
& Magee, 2014b [Appendix A]), it was not a requirement for all family members to
provide consent in order for the family to be eligible for the study. This criterion was put in
place to reduce the possibility of some family members feeling pressured to provide
consent (Cridland et al., 2014b).
The first author conducted the interviews. The interviews were conducted following
recommendations outlined in Cridland et al (2014b). These recommendations included
conducting interviews with individual participants in a private space within the family
home (e.g., study or quiet living area), conducting interviews at a preferred time for
participants, and conducting interviews at an appropriate pace to facilitate accurate
interpretation of interview questions (Cridland et al, 2014b). Interviews lasted for an
approximate average of 60 minutes (range 40-150 minutes). Interviews were audio
recorded for transcription.
Instrument
An interview guide was developed based on a review of the literature and through
multiple discussions with the authors. Based on research recommendations (Cridland et al.,
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2014b), the interview guide was pilot tested on one family who met the research eligibility
criteria 19
. Minor wording changes to questions resulted from pilot testing.
The interview included several ‘warm-up’ questions (related to hobbies and interests)
aiming to relax the participants and increase rapport with the interviewer (Cridland et al.,
2014b). Rather than focusing directly on family roles and responsibilities, questions were
generally related to experiences of being/having an adolescent family member with ASD.
Questions were designed to elicit both positive and negative experiences, attitudes, and
feelings. In order to investigate participants’ perceptions about other family members’
experiences, we asked a range of socio-emotional inference questions, which assessed an
individual’s understanding of another’s experience (Artar, 2007), such as ‘How do you
think they felt?’. There was also scope for flexibility in topics that were discussed, as well
as follow-up questions to encourage elaboration. Before concluding the interview,
participants were encouraged to raise any additional topics that they felt were important in
understanding their experiences. For sample interview questions see Appendix O.
Data Analysis
NVivo (QSR International, 2012), a qualitative data management program, was used
to manage the data. The data were analysed following the inductive coding process
outlined by Braun and Clarke (2006). This process included familiarization with the data
(the primary researcher conducted and transcribed all interviews), generation of initial
codes, collation of codes into potential themes with corresponding quotes, review of
themes with credibility checks, and final coding of themes (Braun & Clarke, 2006) 20
. A
formal measure of inter-rater agreement was not employed. Rather the process involved
19 The family involved in pilot testing was not included in the final sample.
20 Additional information outlining data analysis procedures including thematic coding procedures and data
integrity and credibility strategies employed are elaborated in Appendix V, Section 5.
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one member of the research team and one independent checker reading all transcripts with
the potential themes identified by the first author. No major changes to the themes
identified by the primary researcher were identified as being necessary by either member
check. Following the procedure outlined by Braun and Clarke (2006), a final consultation
with the research team followed to discuss specific theme descriptions and selection of
most relevant quotes
7.4 Results
Four key themes emerged from the process of data analysis described above. The
themes were roles at school, roles at home, tension between engagement and distancing
with the family system, and adolescent adjustment to having a brother with ASD. Direct
quotations are presented in indented paragraphs, in which square brackets ([ ]) indicate
information added by the primary researcher for clarification and ellipses (...) indicate
material omitted for conciseness. For purposes of confidentiality, all names have been
changed.
Roles at school
This theme captured participants’ beliefs about the unique roles that the sisters had
become involved in for their younger brother at secondary school. Overall, the roles
involved advocating for their brother with teachers and peers. Various terms were used
among the family members to describe these roles including; “big sister”, “mother-hen”,
“maternal”, “protector” and “body guard”. The following quote summarises the nature of
this role from the perception of one mother:
“She’s very protective... a bit of a mother-hen with Jayden... She’s
very maternal but like it’s a funny word to use with siblings but it’s the
only word I can think of. She’s very loving and her protectiveness with
Jayden is something she’s had to do all the way through her life…
because she thinks that’s her role.” (Mother, Family 2)
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More specifically, one of the roles undertaken at school involved liaising with teachers
about issues concerning their brothers. The responsibilities of this role encompassed
educating teachers about ASD, passing messages between teachers and parents, and
managing miscommunications on behalf of their brother. Eight participants discussed this
role:
“Well, lots of teachers always come to me because they all don’t
know, when they should know, that he is Autistic. One time he went to
say something to a teacher but he said to her that she looked arousing.
And she came to me and I said that I was positive that he doesn’t even
know what that word means but has just heard it somewhere and said
it as being nice. It’s hard to explain to a teacher because they never
really get it as someone who hasn’t had the same opportunity to feel
it.” (Sister, Family 2)
“...she’s always got teachers coming to her asking and wanting to
know why something hasn’t been done or where is he [or] what’s
happening at the moment? She’s always been bombarded with
questions like that through school.... it’s a real big sister kind of thing
but she’s only 18 months older than him so it’s pretty hard I imagine.
Like she’s always coming home and sort of saying, ‘Aw the teachers
said such and such’ and ‘This teacher wants to know this or that’...”
(Father, Family 2)
The other role at school discussed by participants (n=7) involved dealing with other
students. A major responsibility of this role involved protecting their brother from bullies
and educating their brother about how to deal with other students:
“…if there’s a problem then I will go sort it out with him, not for him
but with him so that he understands how to deal with the problem... I
do like it because it is kind of saying, ‘Hey step back, that’s my
brother you’re messing with’.” (Sister, Family 3)
“…being at school makes it hard for me because people are always
like, ‘What’s the go with your brother?’ And I’m just like, ‘Leave him
alone he has Autism, he just doesn’t understand.’ It’s just hard… it
makes me sad.” (Sister, Family 2)
“…She would never stand there and watch anybody get teased or
bullied without saying something but in particular Jayden, she would
well and truly step in. I suppose she has a good morality about those
sort of things but maybe not the best way of executing it at the same
time.” (Mother, Family 2)
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Another responsibility of dealing with other student undertaken by the sisters was
educating other students about ASD:
“Like at the start of the year everyone was saying like ‘You’re
Robert’s sister, he’s a bit weird’ and I would go, ‘Yeah you know
what, he has Autism’ and that’s when they would ask me what it is and
I’d tell them and then they’d be like, ‘Oh, I didn’t know that’ and then
they would stop saying what they were saying. So they have to
understand and that makes me feel good.” (Sister, Family 3)
As evident in participants’ comments, there were mixed attitudes about being associated
with these roles at school. The majority of family members (n=7) discussed both positive
and negative impacts on the sisters, resulting in some ambiguity about the roles. The
positive impacts included feeling good about themselves, being able to help their brother,
and being able to help others both understand their brother and ASD:
“[Explaining ASD to other students means] they wouldn’t tease him...
so that would be helping me and making me feel better and makes me
not think so much about the bad things.” (Sister, Family 1)
“It makes her feel really good because, as I said, she has this mother-
hen-type personality and it does make her feel like she has a role I
suppose. It makes her feel important to somebody, to him, to me. It
makes her feel she has the role as the big sister, the protector.”
(Mother, Family 2)
The main negative impact discussed by the sisters was that although they were undertaking
a care-giving role, their brothers often did not listen to them:
“[Sometimes when I try to help him he] just doesn’t listen and does it
anyway and it gets me more annoyed and frustrated.” (Sister, Family
3)
“At school there were boys asking him for money [and]… I got
frustrated with him because he kept doing it even after I told him it
was a scam. I’d have to go stand with my brother to make sure he
didn’t give him any more money… it feels upsetting that people would
try to use my brother and make him vulnerable.” (Sister, Family 1)
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Negative impacts of the sisters’ roles at school recognised by other family members
included the sisters feeling burnt-out and having to cope with the negative consequences of
trying to help:
“[Sometimes when she tries] to help him he’ll do nasty things to her
like call her names to make other people laugh.... He doesn’t
understand that people are laughing at him and not with him… She
knows why he does what he does and she still helps… [So] as much as
that’s a good thing I feel that can also be a bit of a burden… [and] I
also feel a little bit sad for her that she feels like she needs to take on
that role of having to watch him. She’s always having to watch him
and be aware of what’s going on and having to fix something. So it is
a bit of a burden as well.” (Mother, Family 2)
“She’s over it but she knows to answer the [teachers’] questions if she
can... She knows not to just ignore them or just go, ‘I don’t know’.... I
feel pretty proud that she can do it and that she deals with it but still
it’s a pretty heavy responsibility really and also not knowing if she
should say this or shouldn’t. So it can be a bit of a burden for her.”
(Father, Family 2)
Interestingly, all of the brothers (n=3) said they were unsure of whether their sisters looked
after them at school:
“I don’t know in that department [if my sister helps me] because I’m
not always around her and she’s not always around me…. I don’t
really remember getting myself into a situation and going to her [for
help].” (Brother, Family 1)
The sisters differed in their perceptions regarding the awareness that their brothers had
about the things they did to help their brothers at school, ranging from feeling appreciative
to not being aware:
“He does feel grateful; he just shows it in his own way.” (Sister,
Family 3)
“I don’t think he ever really takes much notice of me.” (Sister, Family
2)
In summary, the sisters played various roles for their brother at school including
advocating for their brother with teachers and peers, liaising between the teachers and their
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parents, managing miscommunications; protecting their brother from bullies, and
educating their brother about how to deal with other students. Overall there were mixed
attitudes about undertaking these roles, resulting in some ambiguity about the
responsibilities.
Roles at home
This theme captured participants’ beliefs about the roles undertaken by the sisters at
home. All the sisters (n=3) perceived that they were responsible for a greater amount of
household duties compared to their brothers. At other times they recognised valid reasons
for this increased responsibility; other times they felt the job distributions were unfair:
“[Sometimes the job distributions are not fair because my brother]
could have been playing on the PlayStation all day and I could have
put the dishes away and vacuumed and then Mum could say, ‘Oh
Hannah and you help me chop up the food for dinner?’ And I could be
like, ‘Why don’t you ask him to do it? I’ve just done all this…’ And
then they get a bit angry at me.... I’ve felt like that so many times.... I
really don’t know what the reason is because [he is] quite capable of
doing the things that I do… so I don’t understand why they ask me to
do it and not share it out evenly.” (Sister, Family 1)
“Jayden doesn’t do much at all… I think I do more than Jayden all the
time because he never comes up from his room. [Also] if we need to
get ready for something, half the time I will have to pick him out
clothes because he can’t really do it.” (Sister, Family 2)
“Robert does nothing, he gets in a fight with Mum when she asks him
to do something and she always gives in because of his anger. [But] I
don’t mind, I would rather do more than him get angry which is what
happens anyway.” (Sister, Family 3)
The sisters’ perceptions were not echoed by all the parents, with only one parent
recognising that she often asked her daughter to do more household chores than her son:
“[My son with ASD will] do whatever I ask him to do, not a problem.
In fact, like one time I was like, ‘Matthew can you bring the washing
in?’ And he was like, ‘Oh, it’s already in Mum’, and I was like ‘Oh!
Ok’ So yeah he’ll do whatever I ask him to… [But] I probably do get
Hannah to do more…” (Mother, Family 1)
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“[She] is messy. She will do things if she gets paid, and then she’ll
only do a half-hearted job.” (Mother, Family 2)
“[My son with ASD] empties the garbage bin, if I ask him to wash up
he would, if I asked him to clean something up he would, he’s done
washing, he’s done cooking. Christie is the total opposite. She does
nothing. She’s a teenager and a girl… I would say I do the most
[around the house] and Christie would do the least.” (Mother, Family
3)
One of the mothers reflected on the differing roles that her daughter undertakes for her
brother when at home compared to school. More specifically, she felt her daughter did not
continue the protective role at home. She attributed this change to her daughter perceiving
her brother to be safer at home compared to school, and feeling tired from the caregiving
role undertaken at school:
“At home she can put him in his place. She will tell him where to go,
whereas as school she would never really do that... She will say things
here [at home] that she probably wouldn’t at school because she
knows she wouldn’t want to upset him at school because he doesn’t
have any safe zone. Whereas at home she knows he will just go back
down to his room and do his thing and that’s ok...[After school] I
think she’s ready to not be the big sister. I think she just wants to
relax.” (Mother, Family 2)
In summary, the participants perceived that the various caregiving responsibilities
undertaken by the sisters for their brother at school were not continued at home. However,
the sisters perceived that they were responsible for a greater amount of general household
duties compared to their brother. Notably, the majority of parents did not agree with this
perception.
Tension between engagement and distancing with the family system
This theme captured the sisters’ discussions about a conflicting desire for both
engagement and distance within their family. All sisters (n=3) described cherishing quality
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family time and explained that the importance of this time continued even as they were
getting older. In addition, sisters discussed the ways their family time was impacted by the
interests and mood of their brother with ASD:
“We were all mucking around last night and it was pretty fun
because we got to sit down and talk with the whole family without
fighting, so that was a good night…. We would have plenty more
nights like that if he didn’t act the way he does. Like being angry and
a sticky-beak.” (Sister, Family 3)
“If Matthew doesn’t like it [the family activity] then he would be
grumpy and sulky the whole time and that’s just too difficult for
Mum and Dad to deal with. So they like to generally pick something
that he would like…” (Sister, Family 1)
Of particular importance to the sisters was having quality one-on-one time with their
parents. All the sisters said they valued time spent alone with their parents and discussed
how this need continued even as they grew older:
“I like to do anything with Mum. I like driving with Mum and visiting
her at school when she’s on canteen. I like going shopping with Mum
and just having her to myself basically. I really like one-on-one time
with her.... [And] I like to spend time with Dad. I like to be at home
with just Dad. Like if he picks me up from school if I’m sick or
something and I’m at home with just Dad.” (Sister, Family 1)
“I like to go and have a coffee with her and just talk… I just like to
talk and talk and talk with her- just me and her time.” (Sister, Family
3)
In addition to cherishing time with family, all sisters (n=3) described experiencing a
conflicting desire to distance themselves from the FS:
“I do like to hang out with my friends and boyfriend. I also like to
spend time with my family, but not as much as before.” (Sister, family
1)
In summary, the sisters all described experiencing tension between desiring to both
distance and engage themselves with the FS. In particular, the sisters discussed the
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importance of having quality one-on-one time with their parents and indicated that the
opportunities to do so were sometimes limited by living in a family with ASD.
Adolescent adjustment to having a brother with ASD
This theme captured participants’ discussions about the adjustments the sisters’
needed to make in having a brother with ASD during adolescence. More specifically,
family members were asked whether the sisters’ perception of having a brother with ASD
had changed since they were in elementary school. The most frequent response (n=7) was
that the sisters had acquired more knowledge about ASD, which had contributed to them
being more understanding of their brother:
“In primary [elementary] school I just pretty much knew that
Matthew was different and that’s about it. I had no knowledge of
Asperger’s whatsoever. So it’s so different now... I just am more
understanding of what he is like and what the best thing to do about
it is, how to converse with him more and what he likes and doesn’t
like.” (Sister, Family 1)
“…when he was first diagnosed… I just didn’t really get it because I
was too young. Now that I’ve gotten older I understand it more.”
(Sister, Family2)
The increased understanding of their brother was also perceived to make the sisters more
understanding of others in general:
“I think it makes her realise that people are different and … that you
have to have patience to deal with different people.” (Father, Family
1)
Overall, sisters displayed resilience to the challenges of being an adolescent sister of an
individual with ASD. This resilience was evident in various ways, such as positive
meaning making, normalisation, and acceptance:
“To me he’s normal because I’ve just grown up with it… I couldn’t
imagine Matthew any other way really… I’m just glad he’s like this
because it makes it different, like a different way of growing up. It’s
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good… But in everything else I guess I’m just your average teenager.”
(Sister, Family 1)
“It makes me understand a lot more about him and Autism. It gives me
a challenge… I think challenges are here to test you on how you react
to it. And Robert sets challenges for me, definitely!” (Sister, Family 3)
In addition to the positive aspects, all sisters (n=3) discussed difficulties with having an
adolescent brother with ASD. These difficulties included feeling their brother received
special treatment (e.g., more allowances regarding food), challenges associated with their
brother not following social conventions (e.g., volume of speech), and their brother’s
rigidity (e.g., minimal flexibility when following rules to a game). However, the most
frequently discussed negative impact was a perceived reduction in attention from parents.
This impact was of high importance to the sisters, given the significant value they placed
on time spent with parents, as discussed earlier. All the sisters (n=3) discussed reduced
attention from parents. However, the level of acceptance and reasons attributed to it varied:
“[When he was diagnosed I felt] confused and angry because no one
would focus on me, it was all about him… [I thought that would
change but] it has just stayed like that… It sucks a lot of the attention
[meaning] no-one is really there for me. No-one really pays attention
to me… and I feel like it has gotten harder since he has gotten older.”
(Sister, Family 2)
“…he gets a lot more attention, like if Mum and I are sitting and
talking he will come in and Mum will lose track of what we are talking
about and focuses on him. Rather than ignoring him and focusing on
me and her.” (Sister, Family 3)
The sisters discussed multiple strategies they use to help them manage the challenges of
having an adolescent brother with ASD. These strategies primarily included getting
practical and emotional support from family (generally their Mother) and close friends:
“I go to Mum, I tell Mum because then she’ll do something about it.
Like I’ve felt like that before [when I’ve had issues at school with my
brother] and I’ve just told Mum about it and she has mentioned it to
the school… [but] sometimes Mum is the cause of my frustration so
I go to my best-friend and I just tell her about everything… and I just
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say, ‘I can’t deal with this’... They pretty much help just by
listening.” (Sister, Family 1)
None of the sisters discussed seeking formal support as a strategy they had used
previously. However, two sisters described a desire to have someone separate from their
family to talk freely with about the challenges of having an adolescent brother with ASD:
“[It would be helpful for] someone to be there who wouldn’t get angry
or judge me for wanting to talk about it and for wishing that he
doesn’t have it [ASD].” (Sister, Family 2)
In summary, the majority of sisters said that over time they had developed more
knowledge about ASD and were more understanding of their brother. Further, whilst
many challenges of being an adolescent sister of an individual with ASD were discussed,
resilience was also evident through positive meaning making, normalisation, and
acceptance.
7.5 Discussion
To our knowledge, this is the first study to investigate family roles and
responsibilities undertaken by NTD adolescent sisters for their brother with ASD at home
and school. The study used a qualitative approach and involved various family members,
including adolescents with ASD, permitting an in-depth and multidimensional
investigation. Based on available literature, it was hypothesised that sisters would
undertake a range of caregiving roles and responsibilities at both school and home.
Additionally, it was hypothesised that perceptions about these roles and responsibilities
would vary amongst family members. Both hypotheses were supported in the interviews.
The key findings are considered below in the context of existing literature, followed by
discussion of potential strategies for supporting NTD adolescent siblings in families living
with ASD.
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Findings indicated the sisters undertook various responsibilities for their brother at
school. In line with existing research, the sisters reported that these responsibilities had
become more prominent as they grew older and, in particular, when their brother entered
secondary school (Benderix & Sivberg, 2007; Dellve et al., 2000; Dyson, 1999).
Participants described a range of mixed feelings and experiences related to these roles. The
main positive aspect involved experiencing feeling good about helping their brother and
others. However, the sisters also reported feeling burnt-out from responsibilities, receiving
limited appreciation from their brothers, and experiencing occasional negative outcomes of
helping (e.g., receiving criticism for attempting to help). These mixed feelings about
sibling care-giving roles are echoed in existing literature (Benderix & Sivberg, 2007;
Dellve et al., 2000).
Regarding roles at home, all sisters perceived that they were responsible for a greater
amount of household duties compared to their brothers, while the majority of parents’
views were in direct contrast to this. These differing perceptions may be attributed to
higher parental expectations placed on the daughters as more complex tasks seemed to be
expected of the daughters. In line with this, many parents felt that it was natural for the
sisters to undertake significant caregiving responsibilities, with one mother even
commenting that it was in her daughter’s nature to be a ‘mother-hen’.
Whilst it is natural for adolescent siblings to participate in caregiving roles and
responsibilities, the range and degree of caregiving roles undertaken by participating
siblings may impact negatively on the siblings and the FS. Such negative impacts may
include role confusion (Cridland, Jones, Magee, & Caputi, 2013; Smith, 2000), restriction
of healthy adolescent individuation from the FS (Dyson, 1999), and less positive sibling
interactions (Schuntermann, 2007, 2009). In other words, siblings who undertake
parentified roles may find it difficult to form a sense of self autonomous to their roles
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within the FS, and as a result develop resentment towards other family members
(Bagenholm & Gillberg, 1991; Nealy, O'Hare, Powers, & Swick, 2012).
Parentified roles undertaken by the siblings were also evidenced in some of the
varying opinions between family members. For example, the parents overall were not
aware of their daughters’ desire for parental support, their value of family time, or their
perceptions of unfair role dispersion. These findings highlight the need for open
communication between adolescent children and their parents, and challenge the
assumption that all adolescents strive for independence and reduced familial support (Field
& Hoffman, 1999). Moreover, the findings indicate that parental attention and support for
adolescent siblings of individuals with ASD may be critical during adolescence given the
greater care-giving responsibilities undertaken during this period.
Another major finding was that the sisters’ understanding and acceptance of their
brother’s ASD had increased over time (Carrillo, 2012; Dellve et al., 2000; Howlin, 1988;
Moyson & Roeyers, 2012). Existing literature posits that this increased acceptance may
contribute to the siblings’ adoption of greater caregiving responsibilities (Dellve et al.,
2000). Alternatively, the increased involvement in caregiving roles over time may facilitate
understanding and accepting attitudes towards their brother. The direction of this
relationship remains unclear from the current findings and warrants further investigation.
Supporting NTD adolescent siblings
It is important to recognise ways to best support NTD adolescent siblings given the
impacts of the caregiving roles and responsibilities undertaken during this period. The
family is generally considered the primary sources of support for children, including
adolescents, in families living with ASD (Moyson & Roeyers, 2012). However, family
may not meet all of the adolescents’ needs as siblings may perceive parents as having
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limited time to listen to them, or feel guilty about asking for help given their siblings’
significant support needs (Moyson & Roeyers, 2012; Pinkerton & Dolan, 2007).
In these circumstances, formal support services are likely to be beneficial. Clinicians
can help adolescent siblings in various ways by; providing information about ASD,
facilitating strategies to manage challenges, and providing opportunities for siblings to talk
freely about their feelings and experiences (Bradford, 2010). This latter role may be
especially important during adolescence, given the range of major physical, emotional and
social changes during this developmental period, coupled with ambiguous feelings of
protection, resentment, guilt and love that they may experience towards their sibling with
ASD (Howlin, 1988; Pinkerton & Dolan, 2007). Further, clinical support may help
siblings make sense of possible tension between their roles as ‘sibling’, ‘daughter’, ‘care-
giver’, and ‘adolescent individual’ within their FS. In doing so, clinical support may play
an important role in awareness raising and sense making of many of the experiences and
feelings discussed by the sisters in this study.
Family Systems based therapy may be an effective method of delivering such clinical
support. The benefits of such approaches are that under a ‘whole system perspective’ all
individuals have the opportunity to receive individual support, in conjunction with dyad
focused, as well as system focused support (Meadons & Stoner, 2010; Pinkerton & Dolan,
2007). Raising parental awareness of issues for their adolescent children may facilitate
shifts in familial roles and responsibilities, and thus increase family functioning (Cridland
et al., 2013).
Sibling social support groups are another avenue of support that have proven
efficacious (Evans, Jones, & Mansell, 2001; Myers & Johnson, 2007; Smith, 2000). Such
groups can provide similar opportunities as those offered by individual sessions with the
benefit of connecting with other NTD siblings of individuals with ASD. Given the
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importance of peer relationships during adolescence, social support services may be
particularly beneficial (Pinkerton & Dolan, 2007; Schuntermann, 2007; Vliem, 2009). In
line with this suggestion, several siblings in the present study recounted times in which
their friends provided the emotional and practical support that their parents could not
provide.
It is important to recognise, however, that adolescents may resist formal support
services (Rickwood, Deane, Wilson, & Ciarrochi, 2005; Wilson, 2010; Wilson & Deane,
2011). Schuntermann (2009) outlined several reasons for adolescent siblings’ resistance,
including reluctance to access services that appear similar to those provided to their sibling
with ASD, not asking for help in an attempt to reduce burden on their parents, perceiving
their parents’ expectations for them to be the ‘healthy’ child in the FS, becoming
entrenched in parental roles marginalising their opportunity for support, and failing to
recognise their own needs due to the salience of their sibling’s needs. Given that none of
the sisters in our study reported accessing formal support services, it is possible that they
were experiencing some of these barriers. It is critical that families and clinicians are aware
of such issues when attempting to provide support to adolescent NTD siblings. Further, it
is important that clinicians acknowledge and communicate these unique experiences and
potential needs of NTD siblings to the parents, rather than solely focusing on issues
directly affecting the family member with ASD.
7.6 Strengths and limitations
This study presents various research strengths and limitations. First, the divergent,
and at times conflicting, perspectives among family members regarding the roles of
adolescent NTD siblings provides support for the use of multifaceted approaches when
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conducting research in this field. Additionally, the qualitative approach permitted a
detailed exploration of these issues.
However, it is necessary to interpret the findings with caution due to the small and
specific sample as the findings may not be representative of all adolescent sisters who have
adolescent brothers with ASD. Following from this caution, the pattern of functioning
inherent to the families in this sample cannot be generalised to larger populations. There is
a range of factors which may influence the findings such as family dynamics (e.g., size,
ages, gender), family cohesiveness, cultural background, and presentation of ASD in the
family member (Combrinck-Graham, 1990; Cridland et. al., 2013, 2014b). These factors
are worthy of consideration in future investigations. The results nevertheless reflect the
subjective views and perceptions of the family members that participated in this study, and
may be reflective of other NTD adolescent siblings. In support of this outcome, the
experiences discussed were largely consistent within the sample thereby increasing the
validity and likely generalizability of the findings.
Findings should also be interpreted with the possibility that participants may have
been ‘faking good’ in the interviews by focusing on positive outcomes of living in a family
with ASD. In line with this possibility, there was a range of challenges highlighted in the
literature that were not discussed by the participants, such as concerns regarding the
increasing physical size of adolescent siblings with ASD (Benderix & Sivberg, 2007; Ross
& Cuskelly, 2006), management of socially inappropriate self-stimulatory behaviours
(Hellemans, Colson, Verbraeken, Vermeiren, & Deboutte, 2007; Murphy & Elias, 2006),
and concern for their sibling’s future (Petalas et al., 2012). Whilst the lack of discussion
may be indicative of the minimal relevance of these topics for these individuals, it is also
possible these issues were not discussed due to a desire to portray an image of resilience or
positivity.
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7.7 Conclusion
This paper presents various themes emerging from discussions with adolescent NTD
sisters and their families about their experiences of having a younger adolescent brother
with ASD. Key findings were that the sisters undertook various roles and responsibilities
both at school and home that influence sibling wellbeing and family functioning. There
were both positive and negative experiences and emotions related to these roles and
responsibilities, ranging from feeling proud and accepting to feeling frustrated and
burdened. It is critical that we attempt to understand the experiences of these individuals
and families in order to provide them with appropriate support.
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CHAPTER 8: A PERSONAL CONSTRUCTIVIST APPROACH FOR
INVESTIGATING THE DEPENDENCY PATTERNS OF ADOLESCENTS WITH
AUTISM SPECTRUM DISORDER: CASE STUDY OF THREE FAMILIES
Cridland, E.K., Caputi, P., Jones, S.C., & Magee, C.A., (under review). A personal
constructivist approach for investigating adolescents’ with Autism Spectrum
Disorder patterns of dependency: Case study of three families. Journal of
Constructivist Psychology.
8.1 Abstract
This research investigates the utility and practicality of dependency
grids for capturing and presenting the dependency distribution patterns
of three adolescents with Autism Spectrum Disorder. The investigation
also involved family members to explore their level of awareness of
the adolescents’ dependency preferences. The grids were analysed
using a range of measures including the Uncertainty Index and partial
order scalogram analysis. Findings indicate the adolescents had
various ways of dispersing their dependencies amongst their resources
and differed in the types of support most utilised. Additionally, family
members differed in their awareness of the adolescents’ preferences.
The benefits and drawbacks of the adolescents’ dependency
distribution patterns are discussed, as well as the implications of these
patterns for family members. Ways in which dependency grids may be
further utilised with this population in research and clinical contexts
are also considered.
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A personal constructivist approach for investigating the dependency patterns of
adolescents with Autism Spectrum Disorder: Case study of three families
8.2 Introduction
Our dependence on others is evident across all stages of life, from infancy to
senior years. Similarly, our dependencies cover all aspects of life, from the
fundamental needs of food and shelter to the more complex desires of affection and
friendship. Whilst the degree and nature of our dependencies may change over time,
we remain integrally and complexly reliant on others throughout life.
The issue of interest when investigating an individual’s dependency needs is
their pattern of dependence on others. Based on a personal constructivist
understanding, patterns of dependence may be understood to fall on a continuum
ranging from undispersed to indiscriminate dependencies. Undispersed dependencies
are characterised by restricted and inflexible constructions about available resources;
whereby resources are rigidly perceived as either suitable or not suitable (Walker,
2005). Individuals with undispersed dependencies may attempt to have all of their
needs met by a limited number of individuals (Walker, 2005). This style of
dependence often leads to exhausting of resources; ineffectively utilising the help of
resources in areas to which they are not well suited; and/or being left vulnerable if
their limited resources are no longer available (Beail & Beail, 1958; Walker, 2005).
If this occurs, individuals with undispersed dependencies may perceive no-one to be
suitable in addressing their needs and become predominantly autonomous, despite
the drawbacks of this approach (Walker, Ramsey, & Bell, 1988). At the other end of
the continuum, indiscriminate dependencies involve minimal differentiation amongst
resources. Essentially, individuals with this style of dependency dispersion do not
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allocate their dependencies in a specified manner, leading to reliance on all resources
for all challenges (Walker, 2005).
Optimal utilisation of supports is considered to fall in the middle of the
dispersion continuum and is characterised by effective dispersion of needs amongst a
flexible and adaptive network of resources with a considered sense of which person
is most suitable to help with a particular challenge (Beail & Beail, 1958; Chiari et al.,
1994; Walker, 2005). This pattern of reliance on others is referred to as dispersed
dependencies and, according to Kelly (1955, 1962), is developed by individuals over
time as part of the maturation process. That is, children are recognised to be wholly
dependent on parents/caregivers for all needs, but with the ongoing elaboration and
revision of personal constructions that occurs over time, their dependencies become
more differentiated so that ultimately they learn to “satisfy one need here and another
there” (Kelly, 1955, p.914). This dispersion process is facilitated by the development
of hierarchically structured constructs about others and dependencies (Bell, Winter,
& Bhandari, 2010). Such hierarchical organisation of constructions allows us to
interpret, understand, and anticipate situations more easily than if each situation was
interpreted by its various, individual components (Kelly, 1955).
Dependency distribution is a largely social process; as the development of
effectively dispersed dependencies relies on an awareness of others’ perceptions and
mindfulness to balance one’s own needs with those of other people (Walker, 1990,
2005). For this reason it is of interest to explore the dependency distribution patterns
of individuals Autism Spectrum Disorders (ASD), given the sociality deficits
associated with this condition. That is, individuals with ASD evidence persistent and
significant social communicative impairments, as well as restricted and repetitive
behaviours and/or interests (American Psychiatric Association [APA], 2013). More
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specifically, individuals with ASD may exhibit significant social reciprocity
difficulties, experience difficulty accommodating changes to routines, and have
unique intolerances and/or sudden mood changes (Attwood, 2007; Jensen &
Spannagel, 2011). In addition to these core impairments, individuals with ASD often
experience a range of sensory sensitivities, gastrointestinal issues, immune system
irregularities, and sleep disturbances (Attwood, 2007; Solomon & Chung, 2012).
This combination of significant social impairment coupled with physical issues
exacerbate the challenging nature of this condition (Gray, 2002; Jensen & Spannagel,
2011; Seltzer et al., 2003).
Given the sociality deficits inherent to ASD, it is unknown how effectively
individuals with ASD disperse their dependency needs. Related to this, it is unclear
how efficiently individuals with ASD communicate their dependency expectations,
meaning family members may have difficulty understanding, and thus fulfilling, the
dependency needs of individuals with ASD (Procter, 2000, 2001). Third, individuals
with ASD have difficulty developing hierarchically structured construct systems due
to their tendency to rely on networks of isolated constructs (Cridland, Caputi, Jones,
& Magee, 2013a; Procter, 2001). Given the importance of hierarchically organised
constructs for effective construing, it is unclear how effectively adolescents with
ASD disperse their dependencies.
Of particular interest here are the dependency distribution patterns of
adolescents with ASD, as adolescence is considered to be one of the most
challenging developmental stages for individuals with ASD given the range of social,
emotional, physical, and cognitive changes inherent within this period (Levy &
Perry, 2011; McGovern & Sigman, 2005; Stoddart, 1999). Some key challenges for
adolescents with ASD include adjusting to the increased academic, social, and
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cognitive demands of high school; exposure to, and participation in, a broader range
of social roles; and learning how to manage sexual urges in socially appropriate ways
(Cridland et al., 2013a; Hellemans, Colson, Verbraeken, Vermeiren, & Deboutte,
2007; Seltzer et al., 2003; Shattuck et al., 2007).
Given the range of challenges integral to this period, identifying and receiving
support from others is imperative for the adaptive coping of these adolescents
(Beresford, 1994; Fong, Wilgosh, & Sobsey, 1993; Pinkerton & Dolan, 2007). In
doing so, an integrative support network is important, as different resources supply
different types of support. For example, formal support services can provide practical
support such as financial assistance and information whereas informal supports
predominantly provide emotional and social support (Bauminger, Shulman, & Agam,
2003; Beresford, 1994; Myers & Johnson, 2007; Phelps, McCammon, Wuensch, &
Golden, 2009b). Whilst support networks involve individuals at various levels of the
community (Brewin, Renwick, & Fudge Schormans, 2008; Humphrey, 2008; Myers
& Johnson, 2007), the family provides the majority of support for adolescents with
ASD (Bradford, 2010; Field & Hoffman, 1999; Gray, 2002; Orsmond & Kuo, 2011;
Pinkerton & Dolan, 2007; Solomon & Chung, 2012).
The present paper consists of two studies exploring the dependency patterns of
three adolescents with ASD, and their family members’ awareness of these
dependencies. More specifically, Study 1 investigates the dependency patterns of the
adolescents with ASD, using dependency grids. Dependency grids are a personal
constructivist tool used to explore the resources an individual utilises when
confronted by challenging situations (Beail & Beail, 1958; Bell, 2001; Walker,
2005). Further, dependency grids investigate the extent to which the needs of an
individual are dispersed amongst others; which situations provoke help seeking by an
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individual; and which situations an individual may feel they have insufficient
resources to utilise (Walker, 2005; Walker et al., 1988). It was anticipated that the
structured nature of the dependency grid would suit the processing style of
individuals with ASD, given the proven efficacy of repertory grids with similar
populations (Hare, 1997; Hare, Jones, & Paine, 1999; Hare, Searson, & Knowles,
2011; Mason, 2008; Thomas, Butler, Hare, & Green, 2011).
Study 2 investigates family awareness of the adolescents’ dependency
distributions using a modified version of the Family Grid (Procter, 1985b). Family
Grids involve family members completing grids for how they predict other family
members would respond. In doing so, they provide a measure of communality (or
similarity) between individual grids, which allows us to highlight areas of awareness
versus misunderstanding in families (Procter, 1985b).
8.3 Study 1: Investigating the dependency patterns of adolescents’ with Autism
Spectrum Disorder
The primary aim of Study 1 was to investigate the dependency distribution
patterns of adolescents with ASD. The study focused particularly on the adolescents’
distribution of needs amongst family members, given the significant role the family
plays in supporting adolescents with ASD (Bradford, 2010; Cridland, Jones, Magee,
& Caputi, 2013b; Field & Hoffman, 1999). In addition to exploring who the
adolescents relied on, Study 1 investigated the types of support preferred by the
adolescents, including emotion-focused, problem-focused, advocacy, education, and
social support.
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To our knowledge, no research data are available about the use of dependency
grids with adolescents with ASD. Therefore, a secondary aim of Study 1 was to
explore the efficacy of conducting dependency grids with adolescents with ASD.
8.3.1 Method.
Sample. The sample consisted of three adolescents with ASD. Eligibility
criteria for the adolescents with ASD included having a formal diagnosis of
ASD 21
, being male 22
, and attending mainstream secondary schooling. In order
to increase homogeneity, there were also eligibility criteria for the families of the
adolescents, including; families with two adolescent children (one adolescent with
ASD and one neurotypically developing adolescent 23
); two parents who identify as
the primary caregivers; all family members living at home a minimum of five days
per week; the adolescent being the only family member formally diagnosed with
ASD; and all family members having knowledge of the ASD diagnosis. Additional
demographic information is presented in Table 8.1.
Table 8.1: Demographic information for Study 1 and 2
Family
number
Adolescent:
age,
School grade
Sibling:
Gender (age),
Education level
Father:
(age)
Education level,
Current
employment status
Mother:
(age)
Education level,
Current
employment status
21 All participants with ASD had received a formal diagnosis of Asperger’s Syndrome from either a
paediatrician or psychologist based on ASD criteria in the Diagnostic and Statistical Manual of Mental
Disorders (DSM), fourth edition (APA, 2000). Given the classification changes in the DSM-V (APA,
2013); these diagnoses are referred to here as ASD. 22
The rationale for focusing on adolescent males with ASD was based on the current predominance of
males diagnosed with ASD (Holtman, Bölte, & Poustka, 2007; Krahn & Fenton, 2012) and previous
recommendations to acknowledge the influence of gender on research findings (Card, Stucky, Sawalani,
& Little, 2008; Cridland, Jones, Caputi, & Magee, 2014a; Hsiao, Tseng, Huang, & Gau, 2013). 23
From hereon, the adolescent participants with ASD will be referred to as ‘adolescents’ and the
neurotypically developing adolescent siblings as ‘siblings’/‘brother’/‘sister’.
Chapter 8
241
1 16,
10 th
grade
Female (18),
Secondary
School graduate
(52) Technical
college,
full-time work
(50) University
graduate,
part-time work
2 16,
10 th
grade
Female (17),
11 th
grade
(47) Secondary
School graduate,
casual work
(44) University
graduate,
full-time work
3 15,
9 th
grade
Male (18),
University
Freshman
(50) University
graduate,
full-time work
(51) University
graduate,
full-time work a Autism Spectrum Disorder
Procedure. Ethical approval was granted by the University’s Human Research
Ethics Committee (Appendix L) prior to commencing participant involvement. A
sample of convenience was recruited from participants involved in a previous research
study who indicated their interest in being involved in future university research. The
broad research aims were explained to participants by an information sheet (Appendix
Q) and an introductory meeting with the first author. Following ethical standards for
research with children, written consent (Appendix R) was obtained from the participants
and their parents.
The dependency grid interviews were conducted based on recommendations
outlined in Cridland et al (2014b [Appendix A]), including conducting interviews with
individual participants in a private space within the family home (e.g., study or quiet
living area); conducting interviews at a preferred time for participants; and conducting
interviews at an appropriate pace to facilitate accurate interpretation of interview
questions. Interviews lasted for an average of approximately 30 minutes (range 20-70
minutes).
Dependency grids. Adolescents each completed two dependency grids; Grid 1
focused on the people they turn to in challenging situations and Grid 2 focused on the
types of support utilised. To ensure consistency between grids, the situations and
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resources were supplied 24
(Green, 2004; Ryle & Breen, 1972a, 1972b; Winter, 1994).
Specifically, supplied situations included both general (e.g., ‘Feeling sad’) and ASD
specific (e.g., ‘Have questions about ASD’) issues. See Appendix S for the full list of
supplied situations and resources. The supplied situations remained consistent across
Grid 1 and 2. Participants were also encouraged to add relevant situations and/or
resources, and these additions were included in analysis.
A dichotomous scale for allocating resources to situations was employed,
following Kelly’s original methodology (Button, 1985). However, based on
recommendations for conducting grids with young people with disabilities 25
(Ravenette,
1980, 2005; Thomas et al., 2011), an amended procedure for allocating resources was
used. That is, participants sorted ‘resource cards’ according to which resource they
would/would not use for each challenging situation, with the first author completing the
grid accordingly (Appendix T). Instructions were framed in the present tense to ensure a
focus on the adolescent’s current dependency distribution (Talbot, Cooper, & Ellis,
1991). The specific instruction for allocating cards in Grid 1 was, ‘If this challenging
situation happened right now, and these people were available, who would you turn to
for help?’ and ‘If this challenging situation happened right now, what type of support
would you use?’ for Grid 2. These instructions were presented verbally and visually on
a ‘resource-card sorting mat’ (Appendix U).
Analysis. The computer program Gridstat (Bell, 2009) was used to analyse the
grid data. The Uncertainty Index (Bell, 2001) was calculated as a summary measure of
each grid. This index provides a score (from 0-1) of the uncertainty associated with the
24 The supplied situations and resources were derived from interviews conducted with 37 participants
(adolescents with ASD, mothers, fathers, and adolescent siblings) from 13 families, discussing common
challenges and coping strategies for adolescents with ASD. 25
In some contexts, ASD is considered a disability, more commonly however it is considered a condition
(Attwood, 2007; Seligman & Darling, 2007).
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allocation of dependencies to each resource. A score of 0 is provided when only one
resource is utilised in a situation, representing no uncertainty in dependency allocation;
and a score of 1 is provided when all resources are used for a situation. The Uncertainty
Index was chosen over the traditional Dispersion of Dependency Index (Walker et al.,
1988) as it is not influenced by sample size.
Following this, partial order scalogram analysis (POSAC) (Guttman, 1944) was
conducted to model each grid. Specifically, POSAC orders the resource-situation to
reflect the hierarchical relationships among resources and then uses an iterative
algorithm to find a best-fitting configuration (Bell, 2001). The vertical dimension
reflects the number of situations a resource is available for, with those towards the top
being depended on in more situations. The POSAC analysis adds ‘ideal’ and ‘minimum’
resources at each extreme of the vertical dimension. The horizontal dimension reflects
the differentiation of sets of situations covered by resources.
Several other summary measures proposed by Bell (2009, 2001) were also
calculated. The ‘Dependence Total’ reflects the overall number and percentage of
resources utilised across all situations, with higher percentages reflecting greater
dispersion. The ‘Cognitive complexity’ reflects the differentiation among resources and
situations. The breadth of the POSAC hierarchy, referred hereafter as the Breadth index,
provides an indication of the degree of differentiation of sets of situations covered by
the resources. The depth of the POSAC hierarchy, referred hereafter as the Depth index,
provides an indication of the variation in resource availability or complexity of the
resource structure. The three most utilised resources and their corresponding
percentages are also reported.
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8.3.2 Results and discussion.
Grid 1: Dependency dispersion among resources. Summary measures for Grid 1
are presented in Table 8.2. For all measures, higher scores indicate greater dispersion of
dependency.
Table 8.2: Summary measures of Grid 1
Participant Uncertainty
index
Dependence
total (%)
Cognitive
complexity
Breadth
index
Depth
index
Most utilised
resources (%)
1 .96 58 (57%) .67 .42 .65 Mum (24%)
Dad (17%)
Older sister (17%)
2 .97 52 (61%)
.64 .33 .59 Older sister (27%)
Older brother (23%)
Myself (23%)
3 .91 58 (49%) .82 .59 .59 Mum (26%)
Dad (21%)
Myself (19%)
Overall, the Uncertainty Index indicates the three participants have similarly high
dispersions of dependencies amongst resources in Grid 1. Additionally, based on
cognitive complexity measures, each grid has moderate to high differentiation among
resources and situations; Participant 3 has the most cognitively complex network of
dependency distribution. The grids vary, however, in the way the resources are
allocated. For example, the distribution pattern for Participant 2 features minimal
breadth but moderate depth, indicating modest differentiation of resources amongst
situations but various resources available for certain circumstances. Grid 1 for each
participant will be considered in detail below.
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Participant 1. Participant 1 is a 16 year old male with a diagnosis of Asperger’s
Syndrome. He attends a mainstream secondary school with an Autism Unit and says he
enjoys school. Participant 1 describes himself as a “smart” and “quiet” and enjoys
spending time in his room drawing pictures and playing computer games. Participant 1
adjusted the supplied resources by removing the ‘other family’ and ‘someone outside
family’ resource-cards, saying these were not relevant to him. During the grid interview
Participant 1 was observed to rank the resource-cards according to his preferences, and
upon completion said he found the activity helpful. Figure 8.1 shows the POSAC
representation of Participant 1’s grid.
Figure 8.1: The POSAC representation for Participant 1, Grid 1
Summary data and the POSAC representation indicate that Participant 1’s most
heavily relied upon resource was his mother. His dependencies were then divided
between his father and siblings and himself. Inspection of the resources indicates
Participant 1 relies on siblings, particularly his older sister, across various situations
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such as when feeling frustrated, sad and lonely, and when having problems with his
parents.
Participant 2. Participant 2 is a 16 year old male with a diagnosis of Asperger’s
Syndrome and Tourette Syndrome. He attends a local secondary school, which he
dislikes due to bullying and having to attend “boring subjects”. Participant 2 describes
himself as a “happyish” and “funny” and enjoys spending time playing computer games
with his older siblings. Participant 2 adjusted the supplied resources by removing the
‘other family’ and ‘someone outside family’ resource-cards, saying these were not
relevant to him. During the grid interview Participant 2 was observed to have some
difficulty generalising about the resources he utilises across situations and was
reminded several times that there were no right or wrong answers. Upon completion of
the activity Participant 2 commented that he was “exhausted” but happy that he had
been able to answer the questions. Figure 8.2 shows the POSAC representation of
Participant 2’s grid.
Figure 8.2: The POSAC representation for Participant 2, Grid 1
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Two independent dependency hierarchies were evident in Participant 2’s
dependency network. One hierarchy identified that Participant 2 relies on his siblings
and mother for similar situations, with his older sister being the most utilised resource.
In contrast, ‘Myself’, although substantially available, was an isolated resource.
Inspection of the resources indicated the hierarchy for self-reliance was dominated by
managing emotions (e.g., anger, sadness, loneliness), whilst the other hierarchy was
used for practical and/or social issues, such as difficulties with homework, problems
with friends, or questions about puberty. Participant 2’s father was the least relied upon
resource; but was specialised in that he was the sole person utilised for questions about
puberty.
Participant 3. Participant 3 is a 15 year old male with a diagnosis of Asperger’s
Syndrome. Observation during the interview and previous independent testing indicated
he is of high intelligence. Participant 3 attends a local secondary school and his
favourite subjects are science and maths. Participant 3 describes himself as “energetic”
and “quiet” and enjoys spending time with friends. Participant 3 adjusted the supplied
resources by removing the ‘other family’ and adding ‘Tutor’, ‘Youth group leader’, and
‘Professional’ (which was a combined resource representing his doctor, counsellor and
psychiatrist). During the grid interview, Participant 3 said he was “trying to use logic”
to answer some of the questions, for example he thought it would be “illogical” to put
‘Leave me alone’ with any of the resources that involved obtaining the help of another
person. The complex, and sometimes illogical, nature of help seeking was explained to
Participant 3 several times throughout the interview. Upon completion of the activity,
Participant 3 was concerned whether he had gotten the “answers correct”. Figure 8.3
shows the POSAC representation of Participant 3’s grid.
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Figure 8.3: The POSAC representation for Participant 3, Grid 1
Participant 3’s dependency grid depicts various dependency hierarchies, which
may reflect a dispersed pattern of dependencies. Alternatively, the dependency pattern
may reflect Participant 3’s ‘logical’ approach to dependency allocation rather than his
actual distributions. Regardless, the complex dispersion of dependencies depicted in
Figure 8.3 corresponds with the comparatively high measures of complexity presented
in Table 8.2. Contributing to the complexity of this grid is the larger number of
resources (n= 7) utilised across situations compared to Participants 1 and 2.
Analysis of the resources indicates Participant 3 relies most on his mother, and to
a slightly lesser extent, father. Participant 3 also relied heavily on himself and his older
brother, but these resources were somewhat independent from each other. More
specifically, his older brother was relied on uniquely for problems with bullies, whilst
Participant 3 was reliant on himself when feeling bored.
Other independent, yet less utilised, resources were Participant 3’s youth group
leader and professionals. Inspection of the resources indicated Participant 3 relied
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predominantly on the professional resource for questions about puberty and ASD, and
relied on his youth group leader for social challenges (e.g., ‘Having difficulties making
friends’, ‘Having difficulties with friends’, and ‘Feeling lonely’). It is possible that
Participant 3 also utilised his youth group leader for spiritual issues, but these were not
captured adequately in the items.
Grid 2: Types of support utilised. Summary measures for Grid 2 are presented in
Table 8.3. For all measures, higher scores indicate greater dispersion of dependency.
Table 8.3: Summary measures of Grid 2
Participant Uncertainty
index
Dependence
total (%)
Cognitive
complexity
Breadth
index
Depth
index
Most utilised resources
1 .83 60 (39%) .83 .32 .65 ‘Explain it to me’ (20%)
‘Sort out problem’ (18%)
‘Help me sort out
problem’ (18%)
2 .91 65 (43%) .86 .43 .57 ‘Give me advice’ (26%)
‘Explain it to me’ (17%)
‘Help me sort out
problem’ (14%)
3 .92 82 (54%) .76 .61 .45 ‘Listen to me’ (18%)
‘Give me advice’ (18%)
‘Leave me alone’ (18%)
‘Sort out problem’ (18%)
Overall, the Uncertainty Index indicates each grid has high dispersions of
dependencies amongst types of support sought. Additionally, based on cognitive
complexity measures, each grid has moderate to high differentiation among resources
and situations. However, based on the Dependence Total, participants relied on fewer
types of support compared to their reliance on people (as presented in Grid 1). This may
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mean that generally the participants relied on specific types of support for specific
challenges rather than a range of strategies. Overall, the most utilised resources were
problem-focused strategies such as ‘Explain it to me’, ‘Sort out the problem’, and ‘Give
me advice’, with emotion-focused strategies such as ‘Hug me’ being the least utilised.
Grid 2 will be considered for each participant in detail below.
Participant 1. The types of support most sought after by Participant 1 were
problem-focused strategies (i.e., ‘Help me sort out problem’, ‘Sort out problem’, ‘Give
me advice’ and ‘Explain it me to me’) rather than emotional (e.g., ‘Give me a hug’) or
social (e.g., ‘Play with me’) strategies. Additionally, Participant 1 did not endorse
‘Leave me alone’ for any strategy. Together this pattern of dependence may indicate
Participant 1 seeks the practical support of others but does not seek emotional or social
support. Figure 8.4 shows the POSAC representation of Participant 1’s grid.
Figure 8.4: The POSAC representation for Participant 1, Grid 2
Participant 2. Similar to Participant 1, the types of support most sought after by
Participant 2 were problem-focused strategies (i.e., ‘Give me advice’, ‘Explain it me to
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me’, ‘Help me sort out problem’) more so than emotional (e.g., ‘Give me a hug’) or
social (e.g., ‘Play with me’) strategies. The hierarchy focusing on problem solving
strategies suggests a highly organised construct around the types of support utilised in
specific situations. It is likely that this hierarchy corresponds with the dominant
hierarchy in Grid 1 (Figure 8.2).
Following this, it is possible that the other hierarchy evident in Figure 8.5
corresponds with the ‘reliance on self’ hierarchy evident in Grid 1 (Figure 8.2), meaning
Participant 2 may attempt to manage emotions himself by distraction techniques such as
playing games. However, as evident in the POSAC representation, there are no back-up
strategies if this type of support is not effective. Figure 8.5 shows the POSAC
representation of Participant 2’s grid.
Figure 8.5: The POSAC representation for Participant 2, Grid 2
Participant 3. This POSAC representation shows a very different dispersion
pattern from that of Participants 1 and 2, despite comparable Uncertainty Indices.
Specifically, Figure 8.6 shows a dependency network dominated by largely independent
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support types with few hierarchies. Thus, Participant 3 may see different types of
support as unique to different situations but, unlike the preceding grids, has little backup
for these support types if they are not effective. This pattern of dependence is
considered less cognitively complex, which is echoed in the comparatively low
Cognitive Complexity score (see Table 8.3).
Similar to the grids of Participants 1 and 2, there is minimal utilisation of
emotional and social support strategies. Of particular interest, Participant 3 elected ‘Hug
me’ as strategy sought after in similar situations to ‘Leave me alone’. The conflicting
nature of these types of support may be difficult for significant others to understand and
therefore fulfil. Figure 8.6 shows the POSAC representation of Participant 3’s grid.
Figure 8.6: The POSAC representation for Participant 3, Grid 2
In summary, Study 1 provided a variety of insights into the dependency patterns
of the adolescents with ASD. More specifically, the grids depicted the people and types
of support the adolescents relied in across a range of challenging situations.
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8.4 Study 2: Investigating family awareness of the dependency needs of
adolescents with Autism Spectrum Disorder
The primary aim of Study 2 was to investigate family members’ awareness of the
adolescents’ dependency needs. In doing so, we aimed to highlight areas of discrepancy
and/or communication issues, thereby increasing family members’ ability to understand
and address the adolescents’ needs.
Repertory grids have been used with families living with ASD previously
(Procter, 2000); however, to our knowledge dependency grids have not been used with
this population. Therefore, a secondary aim of this study was to determine the utility of
conducting Family Dependency Grids with families living with ASD as a means of
assessing their awareness of the individual with ASD’s distribution of dependency.
8.4.1 Method.
Sample. The sample consisted of the mothers, fathers, and siblings of the
adolescents from Study 1. Demographic information is presented in Table 8.1.
Procedure. Family members completed a modified version of the Family Grid
(Procter, 1985b). More specifically, family members completed Grids 1 and 2 from
Study 1 as to how they perceived the adolescent would complete the grid. The specific
instruction for Grid 1 was, ‘If this challenging situation happened to your family
member right now, and these people were available, who do you think he would turn to
for help?’ and ‘If this challenging situation happened right now, what type of support
would your family member use?’ for Grid 2. Family members completed the grids by
either using the resource cards or directly completing the grids. As the focus was on the
adolescents’ dependency patterns, family members did not complete grids for their own
dependencies.
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8.4.2 Results and discussion.
Following similar analysis procedures in Study 1, summary measures were
calculated for each family. For all measures, higher scores indicate greater perceived
dispersion of dependency.
Family 1: Summary measures for Family 1 are presented in Table 4.
Table 8. 4: Summary measures for Family 1
Participant Uncertainty
Index
Dependence
Total (%)
Cognitive
complexity
Breadth
Index
Depth
Index
Most utilised resources
(%)
Mum
Grid 1
Grid 2
.92
44 (43%)
.83
.45
.65
Mum (34%)
Dad (23%)
Self (13%)
.98 72 (47%) .92 .60 .53 ‘Listen to me’ (15%) ‘Help sort out problem’ (15%)
‘Leave me alone’ (14%)
Dad
Grid 1
Grid 2
.70
29 (28%)
.78
.17
.67
Dad (45%)
Mum (35%)
Older sister (10%)
.93 56 (37%)
.86 .63 .55 ‘Explain it to me’(25%) ‘Sort out problem’ (18%)
‘Help sort out problem’(14%)
Older sister
Grid 1
Grid 2
.69
36 (35%)
.89
.51
.20
Mum (39%)
Myself (31%)
Dad (25%)
.84 62 (41%)
.83 .39 .78 ‘Listen to me’ (26%) ‘Leave me alone’ (19%)
‘Give me advice’ (19%)
Participant 1’s family had reasonable awareness of the adolescent’s dependency
patterns, as evidenced by the various summary measures. However, several points of
incongruence were also identified. For example, all family members overestimated the
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cognitive complexity of Participant 1’s degree of dispersion of resources as measured
by Grid 1, whilst the father and sibling underestimated the degree of dispersion of this
grid. Further, all family members underestimated the amount of dependency (measured
by the Dependence Total) for Grid 1. This finding suggests that the family members
were aware of the different types of strategies used by Participant 1 across situations but
underestimate the amount of resources utilised.
Regarding the resources relied on most by Participant 1, all family members
recognised the mother and father as highly utilised resources. However, the mother and
sister did not recognise the extent to which Participant 1 reported that he relied on his
sister. This observation could translate to the sister having limited availability for her
brother, the sister not being aware of the extent of the support she provides for her
brother, and/or the sister receiving limited support from her mother for the support she
provides to her brother. Alternatively, the adolescent may have over reported his
reliance on his sister.
Regarding the types of support preferred by Participant 1, family member
responses reflected the adolescent’s preference for problem-focused strategies.
However, the mother and sister considered ‘Leave me alone’ to be a highly utilised
strategy by Participant 1, whilst this was his least preferred type of support. Participant
1 may have difficulty communicating his desire for support from other family members,
leading to confusion amongst family member as to how support him. Alternatively, the
family members may have greater awareness of Participant 1’s utilisation of ‘alone-
time’ in challenging situations than the adolescent himself.
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Family 2: Summary measures for Family 2 are presented in Table 8.5.
Table 8.5: Summary measures for Family 2
Participant Uncertainty
Index
Dependence
Total (%)
Cognitive
complexity
Breadth
Index
Depth
Index
Most utilised resources
(%)
Mum
Grid 1
Grid 2
.93
66 (77%)
.80
.33
.00
Mum (26%)
Myself (25%)
Older sister (24%)
.84 64 (42%) .84 .53 .46 ‘Give me advice’ (22%) ‘Help sort out problem’(20%)
‘Leave me alone’ (20%)
Dad
Grid 1
Grid 2
.79
41 (48%)
.93
.32
.51
Mum (32%)
Sister (32%)
Myself (29%)
.95 62 (41%) .85 .75 .45 ‘Leave me alone’ (29%) ‘Hug me’ (13%
‘Listen to me’ (13%)
Older sister
Grid 1
Grid 2
.85
40 (47%)
.93
.49
.53
Mum (40%)
Older sister (25%)
Dad (22%)
.96 130 (85%) .86 .33 .00 ‘Listen to me’ (13%) ‘Sort out problem’ (13%)
‘Help sort out problem’(13%)
‘Explain it to me’ (13%)
‘Give me advice’ (13%)
Participant 2’s family had reasonable awareness of his dependency patterns, as
evidenced by the various summary measures. However, several points of incongruence
were also identified. For example, all family members overestimated the cognitive
complexity of Grid 1. Additionally, Participant 2’s mother and sister considered
Participant 2 to lack depth of dispersion when distributing his dependency needs. For
the mother this finding suggests an overestimation on the amount that her son relied on
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her, and for the sister this finding suggests she perceives her brother utilised the same
types of support across the majority of situations.
Half of Participant 2’s dependencies were distributed amongst his two older
siblings (see Table 8.2). However, none of the family members recognised the extent of
his reliance on siblings, particularly his older brother. This minimal awareness may
mean Participant 2 has difficulty communicating his preference for support from his
siblings, the siblings do not meet all of Participant 2’s needs, and/or family members
did not recognise the amount of support the siblings provide Participant 2.
Regarding the types of support preferred by Participant 2, the mother and father
overestimated the degree to which Participant 2 seeks to be left alone. As with
Participant 1, this strategy was his least preferred type of support and may mean
Participant 2 has difficulty communicating his desire for support from other family
members or alternatively family members may have greater awareness of the
adolescent’s utilisation of ‘alone-time’ in challenging situations.
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Family 3: Summary measures for Family 3 are presented in Table 8.6.
Table 8.6: Summary measures for Family 3
Participant Uncertainty
Index
Dependence
Total (%)
Cognitive
complexity
Breadth
Index
Depth
Index
Most utilised
resources (%)
Mum
Grid 1
Grid 2
.93
49 (41%)
.82
.40
.59
Mum (33%)
Older brother (18%)
Dad (10%)
.96 69 (45%) .77 .71 .41 ‘Sort out problem’ (19%) ‘Leave me alone’ (15%)
‘Give me advice’ (13%)
‘Play with me’ (13%)
‘Organise activity’ (13%)
Dad
Grid 1
Grid 2
.86
52 (44%)
.86
.52
.57
Mum (29%)
Dad (27%)
Myself (17%)
.96 85 (56%) .69 .71 .41 ‘Listen to me’ (19%) ‘Give me advice’ (17%)
‘Sort out problem’ (14%)
Older brother
Grid 1
Grid 2
.81 41 (35%)
.93 .44 .69 Mum (39%) Dad (22%)
Tutor (19%)
.96 79 (52%) .77 .50 .45 ‘Sort out problem’ (18%) ‘Leave me alone (18%)
‘Help sort out problem’ (15%)
Participant 3’s family had comparatively high awareness of his dependency
patterns, as evidenced by congruency amongst the various summary measures.
Moreover, the overall similarity between the grids indicates the family members have a
comparatively good awareness of Participant 3’s dependency needs across a range of
situations. Additionally, it may mean Participant 3 has a good ability to communicate
his needs to his family.
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One point of interest from the grids is that the mother and brother did not
recognise the extent to which Participant 3 relied on himself. This could mean the
mother and brother underestimate Participant 3’s ability to self-manage in challenging
situations. Alternatively, it could mean Participant 3 overestimates his coping skills and
is not aware of the extent to which he relies on others.
8.5 General Discussion
To our knowledge, this is first the study to explore the use of dependency grids
with adolescents with ASD and their families. By involving family members, the study
not only investigated the dependency patterns of the adolescents with ASD, but also the
level of awareness family members had of the adolescents’ dependency preferences.
The dependency grid proved to be a practical and sensitive approach for capturing
and presenting the adolescents’ unique dependency distribution patterns. Further,
similar to repertory grids, the structured nature of the dependency grid interview (and
the grid itself) was well suited to the interaction style of individuals with ASD (Hare et
al., 1999). Also, the relatively short administration time needed to obtain a significant
amount of information about the adolescents’ dependency patterns provides support for
the use of dependency grids with this population in both research and clinical settings.
The findings indicated several noteworthy issues. First, the adolescents all
reported that they relied significantly on their adolescent siblings for support. More
specifically, siblings were either in the top three most utilised resources and/or were the
preferred sources of support for particular situations for each adolescent. These findings
are in line with the literature which indicates siblings provide both significant and
unique supporting roles for their sibling with ASD (Benderix, & Sivberg, 2007;
Carrillo, 2012; Kaminsky, & Dewey, 2001; McHale, Kim, & Whitman, 2006; Orsmond,
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& Seltzer, 2009). It is important that the significant role siblings often provide for the
family member with ASD is acknowledged, and that they are provided with adequate
support (Smith & Perry, 2005; Pilowsky, Yirmiya, Doppelt, Gross-Tsur, & Shalev,
2004). Further, it is vital that parents monitor the caregiving responsibilities that
siblings undertake to avoid siblings becoming overburdened. Research indicates these
issues are of particular importance with adolescent siblings of individuals with ASD,
given their heightened awareness of the care-giving demands placed on parents and the
siblings’ increased capability for undertaking greater responsibilities (Benderix &
Sivberg, 2007; Morgan, 1988; Seligman & Darling, 2007).
Another pertinent finding was that emotion-focused strategies were the least
sought after type of support identified by the adolescents, with each participant
preferring problem-focused strategies. These findings suggest the adolescents perceived
greater benefit from solution-focused support such as having someone explain an issue
or help ‘sort out’ a situation rather than support which focused on the emotional aspects
of a situation. This type of support is in line with the often practical nature of
individuals with ASD. That is, research indicates that these individuals tend to focus on
cognitive aspects of a problem over emotional aspects (Altiere & von Kluge, 2009;
Bauminger, 2002; Krahn & Fenton, 2012). These findings are important for families, as
they may focus on providing emotional support if they perceive their family member
with ASD to be struggling with a challenging situation (Bradford, 2010). As an aside,
the finding that adolescents with ASD did not identify emotional support as helpful as
other strategies does not indicate they do not experience emotional reactions to
challenging situations (Bauminger, 2002; Bauminger, Shulman, & Agam, 2003;
Cottenceau et al., 2012).
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The Family Grids provided insight into the level of awareness family members
had of the adolescents’ dependency preferences. Overall, the Family Grids showed high
levels of communality, which may be indicative of awareness of the adolescents’
dependency preferences. Whilst high levels of awareness between grids have been
interpreted as a sign of healthy communication between individuals (O’Laughlin, 1989;
Ryle & Breen, 1972a), they may also be indicative of family awareness of obvious
ineffective dependency distribution patterns. For example, several family members
commented on the adolescent’s preference for people to ‘sort out’ challenging situations
over collaborative problem solving (which does not encourage active learning).
Additionally, whilst the Family Grids showed overall high levels of communality, there
were areas of misperception in each family. These findings reflect the real world nature
of families, in which there are areas of miscommunication and limited understanding
which could be improved on, in even the most positively functioning families (Bowen,
1995). It is also important to consider that the family grids were compared against the
adolescents’ responses, which were a subjective (rather than objective) assessment of
their dependency patterns.
8.6 Limitations
Despite the various benefits of using dependency grids with adolescents with
ASD and their families, there are some components of the present studies which should
be considered when interpreting findings. First, the use of supplied elements and
resources was employed for time efficiency and consistency across participants. The
limitations of supplied resources and elements include the possibility of some
elements/resources having minimal relevance for some participants and/or participants
having varied interpretations of the same elements/resources (Fiske, 1995; Fransella &
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Bannister, 2004; Secord & Greenwood, 1995). This issue may be particularly relevant
when considering individuals with ASD given their difficulty elaborating on meanings
of words due to concrete thinking styles and the possibility of unique uses of words
(Attwood, 2007; Cridland et al., 2014b; Gold & Faust, 2012; Koning & Magill-Evans,
2001). Several steps were taken to address this issue. First, the interviewer explained
each resource and element to the adolescents prior to the interview and also encouraged
participants to clarify any issues they did not understand throughout the interview.
Second, participants were encouraged to add elements and resources to increase the
relevance of their grid. Additionally, task instructions were presented visually to
participants to minimise potential misinterpretation from verbal instructions.
Despite these considerations, it is possible that there were variations in the ways
the adolescents interpreted the situations and resources, which should be noted when
considering the findings. For example, Participant 3 had difficulty operating in the ‘as
if’ mode, as his allocation of resources often focused on whether he had utilised the
resources previously. He also made several comments about using ‘logic’ to work out
the ‘right’ answer, which was likely to impact on his resource allocation. It is, therefore,
important to interpret the findings within their scope; that is, as a case study
investigation, which does not claim to be representative of all adolescents with ASD.
Following this, the participants were all relatively high functioning, meaning their
ability to complete the dependency grids may not be reflected by other adolescents with
ASD.
In addition, it is necessary to recognise that the whilst the grids provided a
comprehensive representation of the adolescents’ dependency patterns, in reality they
only provide a snapshot of how these individuals disperse their dependencies and how
they construe the world more generally (Fransella et al., 2004). For efficiency, the
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findings were based on the mean POSAC representations, meaning only a general level
of analysis was presented. This means it is possible the findings underestimate the
complexity of the adolescents’ dependency networks.
There are also some issues to consider regarding the Uncertainty Index (Bell,
2001), which was used as a measure of dependency dispersion. As Bell (2009) explains,
the Uncertainty Index does not account for the relationship between situations and
resources, as it is univariate index. This means the Uncertainty Index treats all
circumstances equally, despite the fact that in some circumstances an integrated network
of resources is considered healthy, whilst in other situations it may indicate an
unhealthy pattern of overdependence (Bell, 2009).
8.7 Recommendations
These studies provide preliminary support for the use of dependency grids with
adolescents with ASD and their families in both research and clinical settings. However,
further research is needed to clarify their efficacy. Based on the issues raised in this
investigation, the following areas warrant further research:
1. Further studies investigating the use of dependency grids with individuals with
ASD are needed. Such research may involve children with ASD and/or
individuals with lower functioning ASD. Such studies may explore the use of
alternate administration approaches, such as pictures or photographs.
Additionally, this research may explore the utility of conducting dependency grids
with other significant resources for adolescents with ASD such as teachers, health
professionals, counsellors, and friends.
2. Research is needed to investigate how adolescents with ASD construe the
dependency patterns of family members. Such research may involve having
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family members complete their own dependency grids, with the adolescents
completing subsequent grids predicting their family members’ responses.
3. Future studies may benefit from eliciting individualised rather than prescribed
resources and elements to ensure participants have personalised grids. Such
research could also investigate the ability of adolescents’ with to engage in the
process of construct elicitation.
4. Future research may compare the dependency distribution patterns of individuals
with ASD with those of neurotypically developing individuals to determine
whether there are any differential trends amongst these groups. For example, the
adolescents in the current investigation predominantly relied on problem-focused
support; however it is unclear whether this is similar to the preferred support of
neurotypically developing teens.
5. Future research would benefit from formally investigating adolescents with ASD
and their families’ experiences of completing dependency grids. Such
investigations may help determine the utility of conducting dependency grids with
this population and may facilitate the processes of administering the grids.
6. More work is needed to investigate methods of statistically analysing grids which
provide relevant and detailed information about the data. In doing so, Likert scales
or rating systems could be utilised rather than dichotomous coding to provide
further information about dependency distribution patterns.
The studies also provide further rationale for the use of the dependency grids in
clinical practice with adolescents with ASD and their families. The following
recommendations highlight ways dependency grids could potentially facilitate clinical
assessment and/or therapy with this population:
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1. Dependency grids could be used in the assessment stages of therapy with
individuals with ASD and their families. Such assessment may help identify
various components of family functioning such as the roles of different members
within the family system and the level of awareness family members have of each
other’s dependency needs. Additionally, dependency grids may be used to
monitor the progress of therapy for individuals with ASD who have undispersed
or indiscriminate dependency patterns.
2. Dependency grids may be used to facilitate discussions about the types of support
utilised by adolescents with ASD and the efficacy of these supports. From here,
informal behavioural experiments testing the efficacy of different types of support
could be conducted with the adolescent to facilitate optimal support seeking. For
example, an adolescent may use distraction in the form of video games to manage
frustration when completing homework assignments. A series of behavioural
experiments with the adolescent may help them recognise that problem-solving
strategies for managing homework assignments are more efficacious than
distraction techniques.
3. Dependency grids may be used to facilitate communication between individuals
with ASD and their families in daily interactions. The application of this
communication may involve amendments to the grid process, such as the card-
sorting approach used in Study 1.
8.8 Conclusion
This investigation provided further support for the value of a personal construct
approach in working with individuals with ASD and their families. Conducting
dependency grids with the adolescents with ASD and their families proved to be an
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efficacious approach for assessing and presenting the dependency distributions of these
individuals. Additionally, the approach was helpful for communicating the adolescents’
dependency patterns to their family members, which may facilitate their general
understanding of the adolescent and how to best support them. It is important we
continue to investigate approaches to understand the experiences of adolescents with
ASD and develop strategies to assist them in communicating with others.
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CHAPTER 9: SUMMARY AND CONCLUSION
This chapter summarises the major findings from the three phases of research
presented in this thesis and discusses the key conceptual and clinical contributions of the
thesis. This chapter also discusses the limitations of the research findings and provides
suggestions for how these may be addressed in future research.
9.1 Summary
The first Phase of this research explored the application of Family Systems (FS) and
Personal Constructivist approaches for understanding adolescents with Autism Spectrum
Disorder (ASD). In doing so, the first conceptual paper (Chapter 2) provided an overview
of key FS concepts and proposed how FS approaches could be utilised to address some
important limitations of existing research in this field. It was recommended that future
research should endeavour to utilise a common conceptual framework, such as that
provided by FS approaches, to better enable a synthesis of findings and facilitate
development of evidence-based clinical approaches for working with families living with
ASD.
The second conceptual paper (Chapter 3) elaborated on previous applications of
Personal Construct Theory (PCT) for understanding ASD. This elaboration included
proposing how key PCT concepts relate to various developmental experiences relevant for
adolescents with ASD, including functioning within increasingly complex social situations,
identity development, and the increasing importance of flexible processing. The benefits of
understanding the experiences of adolescents with ASD based on a personal constructivist
understanding include increasing adolescents’ awareness of the ways in which their
behaviour influences others; encouragement of self-acceptance amongst adolescents with
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ASD; and helping families and clinicians acknowledge the challenges individuals with
ASD face during adolescence.
The second Phase of this research involved a series of qualitative investigations
exploring the experiences of adolescents with ASD and their families. The qualitative
approach involved interviews with adolescents with ASD, mothers, fathers, and
neurotypically developing (NTD) siblings, which provided a detailed and multifaceted
exploration of participants’ perspectives. In alignment with the first Phase of the research,
the investigations were guided by the conceptual frameworks of FS (Chapter 5, 6, 7, and 8)
and personal constructivist approaches (Chapters 4 and 8).
Chapters 4 and 5 presented investigations of the experiences of adolescent boys and
girls with ASD respectively. The findings indicated that challenges of adolescence
encompassed physical, cognitive, emotional, social, and sexual domains. Some challenges
were similar for both adolescent boys and girls with ASD, such as the negative implications of
late diagnosis; the challenges of transitioning to and coping with high school; the difficulties
of adjusting to increased adolescent hygiene demands; and difficulties socialising with
NTD peers. A range of gender specific issues were also identified. For example,
management of sex-specific puberty issues and coping with strong emotions in socially
appropriate ways were particularly relevant to adolescent boys. In contrast, issues pertinent
to the experiences of adolescent girls with ASD included difficulties socialising with NTD
girls, sex-specific puberty issues, and sexual vulnerabilities.
Chapter 5 also provided insight into the experiences of parents with an adolescent
with ASD, which were then examined in more depth in Chapter 6. Findings indicated
parents undertook various parenting roles which may be unique and/or of heightened
significance when parenting an adolescent with ASD. The clarity and dispersion of these
parenting responsibilities were found to influence the FS in a variety of ways. The main
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challenges identified in parenting an adolescent with ASD were behavioural issues
associated with puberty, such as managing their child’s strong emotions and impulsive
self-stimulatory behaviours; and ongoing ‘grieving’ processes associated with having a
child with ASD. The main positive aspects of parenting an adolescent with ASD included
experiencing humorous incidents; sharing of affection; and increasingly accepting, and, at
times, positive attitudes towards being a parent of a child with ASD. The main coping
strategies identified by parents included having time alone, spending time with their
partner, confiding with someone, and involvement in ASD support groups.
Chapter 7 investigated various themes emerging from discussions with NTD
adolescent sisters and their families about their experiences of having an adolescent brother
with ASD. Key findings of this chapter were that the sisters undertook various roles and
responsibilities both at school and home that influenced their own wellbeing and family
functioning. Further, the sisters reported both positive and negative experiences and
emotions related to these roles and responsibilities; ranging from feeling proud and
accepting to feeling frustrated and burdened. Strategies and barriers for supporting
adolescent siblings in families living with ASD were identified for both formal and
informal avenues.
Based on challenges for adolescents with ASD identified in the qualitative
investigations in Phase Two, the third Phase of the research investigated the ways
adolescents with the condition sought help from their family and the types of support they
utilised (Chapter 8). Dependency grids, a personal constructivist tool, were used to capture
and present the dependency distribution patterns of three adolescents with ASD.
Additionally, the adolescents’ family members completed grids focusing on their
perceptions of the adolescents’ dependency patterns. Therefore, a primary strength of the
investigation was the utilisation of a combined personal constructivist and FS framework.
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More specifically, the findings offered novel insights into the dependency distributions of
the adolescents and the functioning of the families as a whole. Additionally, the combined
personal constructivist and FS approach was helpful for communicating the adolescents’
perspective, which was likely to facilitate awareness and understanding within each family.
9.2 Conceptual contributions of the thesis
The thesis demonstrates that FS and PCT approaches can be used, both individually
and in conjunction, to advance our understanding of adolescents with ASD and their
families. Regarding the contributions of FS approaches, the thesis research, informed by
this framework, reflects the significant and enduring influence that having a family
member with ASD has on the individual and the FS. The research informed by FS
approaches investigated family issues at various levels of the FS including systemic,
subsystemic, and individual levels. It also utilised an inclusive approach by involving
various members of the FS. This inclusive approach provided multifaceted perspectives
and experiences, which is a significant strength of the research findings as it did justice to
the complexity of the family issues under investigation.
Furthermore, the FS informed research presented in the thesis utilised a range of
theoretically grounded concepts to explain issues such as Boundaries, Ambiguous Loss,
Traumatic Growth and family roles within the FS. The utilisation of such concepts
provided depth to the research findings and will facilitate communication and synthesis of
thesis findings within the broader literature. The theoretical concepts utilised also covered
positive and negative aspects of family functioning which promoted holistic investigations
of family issues. These findings have the potential to inform both problem-focused and
strengths-based clinical interventions for individuals and families living with ASD.
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The application of PCT for understanding adolescents with ASD and their families
has also contributed significantly to current understanding of the experiences and
challenges facing these individuals. First, the eloquent and empathetic perspective of ASD
provided by PCT makes this approach highly relevant for research and clinical
interventions targeting families living with ASD. More specifically, helping adolescents
with ASD and their families learn about ASD according to the PCT concepts explored in
the thesis may facilitate their awareness of the varying ways people experience the world,
explain why individuals with ASD may find social situations to be challenging, and
increase understanding and acceptance of/for the individual with ASD (Carrington et al.,
2003; Procter, 2001; Stoddart, 1999). Such understanding and acceptance is likely to be
particularly pertinent during adolescence given the range of challenges adolescents with
ASD and their families encounter during this period (Truneckova & Viney, 2006).
This thesis also demonstrates that personal constructivist methodologies utilised in
the thesis have utility for investigating issues for families living with ASD within both a
research and clinical context. Predominantly, the personal constructivist methodology of
dependency grids was a practical and sensitive approach for capturing, presenting, and
communicating the adolescents’ dependency distribution patterns.
The integrated application of FS and PCT approaches utilised in the thesis provided a
unique perspective for understanding adolescents with ASD and their families.
Fundamentally, both approaches emphasise that there are diverse ways in which people
perceive themselves and the world, and that these perceptions can be revised, if necessary
(Alexander & Neimeyer, 1989; Giblin & Chan, 1995; Puig, Koro-Ljungberg, &
Echevarria-Doan, 2008). This capacity to develop more adaptive ways of perceiving
oneself and the world is an encouraging approach for considering the challenges
adolescents with ASD and their families encounter during this period. Furthermore, the
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capacity to change promotes an optimistic outlook for families living with ASD to improve
their family functioning and grow individually and systemically.
9.3 Clinical contributions of the thesis
The findings of this thesis also highlight the importance of clinical support targeted
at adolescents with ASD and their families. More specifically, while the benefits of clinical
support for individuals and families living with ASD, in general, has been well established
(Bradford, 2010; Gupta & Singhal, 2005; Guralnick, Hammond, Neville, & Connor, 2008;
Heiman & Berger, 2007; Luther, Canham, & Cureton, 2005), the present findings reinforce
that adolescence is a unique period of development, meaning clinical support strategies
tailored specifically for this period are necessary. Moreover, the issues of importance for
children with ASD and their families are likely to be different to those of adolescents with
ASD and their families given the range of unique challenges and concerns characteristic of
adolescence.
Additionally, the findings highlight the need for clinical support to be targeted at
various levels within the FS including systemic, subsystemic and individual levels.
Importantly, however, the most effective clinical support interventions are likely to have an
integrative approach, allowing for the complex interrelations amongst subsystems within
the FS to be recognised (Solomon & Chung, 2012). Additionally, the needs of each FS will
be heterogeneous, meaning clinical support strategies individualised for each family are
most appropriate.
Clinical support targeted at the family unit considers how family interactions and
relationships may be altered to improve functioning of the system (Bowen, 1978, 1995;
Bowen & Kerr, 1988). Potential areas of clinical support for families living with ASD
indicated by thesis findings include assessment of roles and boundaries within the FS,
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facilitating healthy communication between family members, and optimising supports for
and within the FS. Systemic approaches may also involve significant others such as
extended family, friends, and teachers, who influence the FS. For example, a systemic
intervention may involve the parents and adolescent with ASD meeting with teachers to
collaboratively address issues at school, which may be indirectly impacting negatively on
the home environment.
The present findings also suggest that subsystemic clinical support should target
various dyads within the FS, such as parental and sibling relationships. Regarding parents,
the findings of the thesis provide many possible directions for clinical services, such as
assessment of parental roles and their impact on individual wellbeing and family
functioning; psycho-education regarding common adolescent-related challenges;
addressing issues of grief or loss associated with having a child with ASD; strengths based
programs to facilitate greater recognition of the positive aspects of ASD; discussion of
strategies to best support their partner; and awareness raising about the benefits of self-care
and ASD social supports. Regarding sibling dyads, thesis findings indicate clinical
interventions may include strategies to improve communication, healthy boundary setting
strategies, and optimising opportunities to enjoy shared interests.
The importance of family members having the opportunity to access individual
clinical support was indicated throughout the thesis. Individual clinical support may focus
on challenges an individual experiences within the FS or may be about issues external to
the FS (e.g., work-related stress, friendships, financial stressors) that influence wellbeing;
thereby indirectly influencing an individual’s ability to function positively within the FS.
Areas of clinical support for adolescents with ASD indicated by thesis findings include
providing developmentally relevant information about ASD and adolescence; developing
coping strategies for managing puberty related issues; providing psycho-education and
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skill development regarding adolescent relationships; monitoring, and where necessary
intervention, for mental health issues; exploration of identity issues; and implementing
strategies to increase self-esteem. Areas of clinical support for NTD adolescent siblings
indicated here include providing information about ASD; developing strategies to manage
challenges and communicate needs; creating opportunities to talk freely about feelings and
experiences; encouraging identity development distinct from the FS; and facilitating
opportunities to be involved in ASD sibling support groups.
9.4 Limitations and suggestions for future research
The conceptual and qualitative work in each Phase of the thesis provides novel
insights into the lived experiences of adolescents with ASD and their families. While much
can be learned from the findings, future research is needed to extend on the present
findings and address some of the limitations, which are outlined below.
Whilst the qualitative methodology used in the second Phase of the thesis is a
strength, given the dearth of literature investigating the direct perspectives of individuals
with ASD and their families (Carrington, Templeton, & Papinczak, 2003; Fong, Wilgosh,
& Sobsey, 1993; Vliem, 2009), some limitations with qualiative approaches warrant
consideration when interpreting the findings. Fundamentally, the reported views and
experiences are the subjective perceptions of the participants and cannot be considered
representative of the views and experiences of all adolescents with ASD and their families.
This issue may be of pertinance as some of the families were involved in more than one of
the studies presented in this thesis. Future studies should endeavour to recruit larger
samples, so as to improve the generalisibilty of findings. Further, future studies may
investigate issues pertinent to adolescents with ASD using quantitive or mixed-methods
approaches in order to further investigate issues raised in the thesis.
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The adolescent sample utilised throughout the thesis may be considered relatively
homogeneous when compared to previous research in the field (Benderix & Sivberg, 2007;
Dew, Balandin, & Llewellyn, 2008). The adolescent-specific findings demonstrated the
limitations of extrapolating findings from research with children or adults with ASD.
Additionally, the findings highlighted the importance of considering the impact of gender
when investigating the experiences of individuals with ASD. Despite these strengths, there
are ways in which the sampling could be improved in future investigations. For example,
the period of adolescence may be further broken down into early, middle, and late
adolescence (Inhelder & Piaget, 1958; Levesque, 2011). Such in-depth investigations of
adolescents with ASD are lacking, but are warranted in order to increase our understanding
of this developmental period. Such investigations may suit longitudinal designs, as this will
permit tracking of pertinent issues for adolescents with ASD and their families over time.
The qualitative studies considered various factors which had the potential to
influence family dynamics, such as sibling gender, age, and birth order. However, there are
areas in which the homogeneity of the samples may be improved. For example, factors
such as cultural background, parental employment and socio-economic status, family
cohesiveness, previous ASD interventions, and levels of support from extended family,
were not controlled for in the present investigations. Future investigations would benefit
from investigating the influences of these factors on research findings.
9.5 Conclusion
This thesis has addressed major conceptual and methodological limitations of
existing literature by investigating the lived experiences of adolescents with ASD and their
families. The findings significantly contribute to understanding of the complex nature of
ASD, for both individuals with the condition, and their families. The qualitative studies
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provide numerous directions for future research investigating the experiences of the
adolescents with ASD and their families. Additionally, the thesis findings have the
potential to directly inform clinical interventions for clinicians working with adolescents
with ASD and their families.
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9.6 References
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International Journal of Personal Construct Psychology, 2(2), 111-121.
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with autism and mental retardation: A case study of 14 siblings from five families.
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Bowen, M. (1978). The Family Therapy in Clinical Practice. Northvale: Jason Aronson
Inc.
Bowen, M. (1995). Clinical view of the family. Family Systems, 2(2), 153-156.
Bowen, M., & Kerr, M.E. (1988). Family Evaluation: An Approach Based on Bowen
Theory. New York: Norton and Co.
Bradford, K. (2010). Supporting families dealing with autism and asperger's disorders.
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Carrington, S., Templeton, E., & Papinczak, T. (2003). Adolescents with asperger
syndrome and perceptions of friendships. Focus on Autism and Other
Developmental Disabilities, 18(4), 211-218.
Dew, A., Balandin, S., & Llewellyn, G. (2008). The psychosocial impact of siblings of
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Fong, L., Wilgosh, L., & Sobsey, D. (1993). The experience of parenting an adolescent
with autism. International Journal of Disability, Development and Education,
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Gupta, A., & Singhal, N. (2005). Psychosocial support for families of children with
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Guralnick, M.J., Hammond, M.A., Neville, B., & Connor, R.T. (2008). The relationship
between sources and functions of social support and dimensions of child and parent
related stress. Journal of Intellectual Disability Research, 52(12), 1138-1154.
Heiman, T., & Berger, O. (2007). Parents of children with asperger syndrome or with
learning disabilities: Family environment and social support. Research in
Developmental Disabilities, 29(4), 289-300.
Inhelder, B., & Piaget, J. (1958). The Growth of Logical Thinking from Childhood to
Adolescence. New York: Basic Books.
Levesque, R.J.R. (2011). Encyclopedia of Adolescence. New York: Springer Reference.
Luther, E.H., Canham, D.L., & Cureton, V.Y. (2005). Coping and social support for
parents of children with autism. The Journal of School Nursing, 21(1), 40-47.
Procter, H. (2001). Personal construct psychology and autism. Journal of Constructivist
Psychology, 14, 107-126.
Puig, A., Koro-Ljungberg, M., & Echevarria-Doan, S. (2008). Social constructionist
family systems research: Conceptual considerations. The Family Journal, 16(2),
139-146.
Solomon, A.H., & Chung, B. (2012). Understanding autism: How family therapists can
support parents of children with autism spectrum disorders. Family Process, 51(2),
250-264.
Stoddart, K. (1999). Adolescents with asperger syndrome- Case studies of individual and
family therapy. Autism, 3, 255-271.
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Truneckova, D., & Viney, L.L. (2006). Personal construct group work with troubled
adolescents. In P. Caputi, H. Foster & L. Viney (eds.), Personal Construct
Psychology: New Ideas. Chichester: John Wiley & Sons.
Vliem, S.J. (2009). Adolescent Coping and Family Functioning in the Family of a Child
with Autism. The University of Michigan, Michigan.
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APPENDICES
Appendix A: Qualitative research with families living with autism spectrum disorders:
Recommendations for conducting semi-structured interviews…………..… 290
Appendix B: The 20 th
International Congress on Personal Construct Psychology…….… 312
Appendix C: Three Minute Thesis Competition Slide…………………………………… 313
Appendix D: The 49th Australian Psychological Society Annual Conference……...…… 314
Appendix E: The 22 nd
Annual PsychDD Conference……………………………………. 315
Appendix F: DSM-V Diagnostic Criteria for Autism Spectrum Disorder...…………….. 316
Appendix G: Subsystems within the Family System…..………………………………… 318
Appendix H: The Fundamental Postulate and 11 Corollaries……………………………. 319
Appendix I: DSM-IV-TR Diagnostic Criteria for Asperger's Syndrome……………….. 322
Appendix J: DSM-IV-TR Diagnostic Criteria for Autistic Disorder……………………. 324
Appendix K: DSM-IV-TR Diagnostic Criteria for Pervasive Developmental Disorder
Not Otherwise Specified…………………………………………………... 326
Appendix L: UOW Human Research Ethics approval…………………………...……… 327
Appendix M: Participant Information Sheet……………………………………………… 328
Appendix N: Consent Form………………………………………………………………. 330
Appendix O: Interview Guide……………………………………...…………………….. 331
Appendix P: Study advertisement……………………..………………………………… 333
Appendix Q: Participant Information Sheet (Dependency Grids)……………………….. 334
Appendix R: Consent Form (Dependency Grids)……………………..……….………… 336
Appendix S: Supplied Situations and Resources………………………………………… 337
Appendix T: Dependency Grid Templates……………...……………………………….. 338
Appendix U: Resource-Card Sorting Mat Template……………………………………... 340
Appendix V: Thesis revisions……………………………………………………………… 341
References………………………………………………………………………………….. 345
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290
Appendix A: Qualitative research with families living with autism spectrum disorders:
Recommendations for conducting semi-structured interviews
Cridland, E.K., Jones, S.C., Caputi, P., & Magee, C.A. (2014). Qualitative research with
families living with autism spectrum disorders: Recommendations for conducting
semi-structured interviews. Journal of Intellectual & Developmental Disability,
Advanced online publication. DOI: 10.3109/13668250.2014.964191.
Abstract
This paper draws on the insights and experiences of a research team
involved in conducting qualitative research with families living with ASD.
The paper provides reflections and recommendations across all stages of the
qualitative research process, with particular attention to the stages involved
in semi-structured interviews. More specifically, the paper provides
reflections and recommendations for issues such as interview guide
preparation, participant recruitment, obtaining informed and voluntary
consent/assent, conducting effective interviews, accurate analysis and
interpretation of data, ways to involve participants in data analysis, effective
communication of research findings, and providing feedback to participants.
In addition, the paper provides reflections and recommendations regarding
researcher health across all stages of the researcher process.
Introduction
Research focusing on the experiences of individuals with Autism Spectrum Disorders
(ASD) and their families is on the rise (Bayat, 2007; Bradford, 2010; Hastings, & Taunt,
2002). Reasons for this growing research attention include the increase in individuals being
diagnosed with ASD (Boelte, & Poustka, 2000; Duchan, & Patel, 2012; Fombonne, 2002,
2003), and a growing recognition of the importance of understanding the complex impact
ASD has on families (Cridland, Jones, Magee, & Caputi, 2013; Morgan, 1988; Seligman, &
Darling, 2007). Many of the studies in this area have utilised qualitative methodologies
(Cocks, 2008; Mascha, & Boucher, 2006). The benefits of using qualitative approaches when
investigating families living with ASD include their capacity to measure the complex issues
(such as family dynamics and mixed or ambiguous attitudes) (Cridland et al., 2013; Dew,
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Balandin, & Llewellyn, 2008; King, Zwaigenbaum, Baxter, Rosenbaum, & Bates, 2006;
Meadon, & Stoner, 2010) and emphasis on presenting rich descriptions rather than on testing
a priori hypotheses (Krogh, & Lindsay, 1999). In addition, qualitative approaches are
considered an appropriate method when involving children (Dockett, Einarsdottir, & Perry,
2009; Mishna, Antle, & Regehr, 2004) and individuals with disabilities (Barnes, 1992;
Cocks, 2008) in research.
Of the range of qualitative methodologies (e.g., unstructured interviews, focus groups,
observations, diaries, etc.), semi-structured interviews are one of the most commonly utilised
methods in this research area (Krogh, & Lindsay, 1999). Semi-structured interviews involve
in-depth conversations between the researcher and interviewee, which have an overall
purpose prompted by the research aims, but are strongly guided by the interviewee’s
perceptions, opinions, and experiences (Carrington, & Graham, 2001; Minichiello, Aroni,
Timewell, & Alexander, 1995). The benefits of using semi-structured interviews with
families living with ASD include flexibility to focus on issues that are meaningful to
participants (Barbour, 2000), permitting diversity of perceptions rather than being inhibited
by ‘standard’ or ‘expected’ response categories (Mascha, & Boucher, 2006; Petalas,
Hastings, Nash, Dowey, & Reilly, 2009a), and minimisation of researcher control over
participants’ expression of their experiences (Brewin, Renwick, & Fudge Schormans, 2008).
Literature exists for conducting qualitative research with children (Docket et al., 2009;
Mishna et al., 2004) and individuals with learning disabilities (Cocks, 2008; Krogh, &
Lindsay, 1999). However, despite the increase of qualitative research in families living with
ASD, we were unable to identify guidelines specifically for conducting research with this
population. Identification of specific considerations for conducting qualitative research with
individuals with ASD and their families is needed as literature based on either neurotypically
developing (NTD) children or individuals with other disabilities cannot be directly applied to
individuals with ASD. Central to this are the various social and communication impairments,
behavioural difficulties, and cognitive processing differences inherent to ASD (Attwood,
2007; Deruelle et al., 2006; Sachse et al., 2013). There are also various unique experiences
for family members of individuals with ASD which are worthy of consideration when
conducting qualitative research with this population. Such unique experiences include
positive and rewarding aspects of having a family member with ASD (Bayat, 2007;
Pakenham et al., 2011), ongoing grief responses (O’Brien, 2007), and management of a range
of unique intolerances, social misunderstandings, and sudden mood changes exhibited by
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their family member with ASD (Attwood, 2007; Heiman, & Berger, 2007; Macks, & Reeve,
2007). These, and other, experiences warrant specific considerations for conducting research
with this population.
The reflections and recommendations throughout this paper cover all stages of the
qualitative research process. Figure 1 depicts these stages, which include research
preparation, data collection, data analysis, and dissemination of research findings.
Consideration is also given to the health and well-being of researchers in this area across all
stages of the research process.
Figure 1: Stages of qualitative research discussed in paper
Preparation
Interview guide development.
Preparation is an important aspect of all research (Dickson-Swift, James, Kippen, &
Liamputtong, 2007, 2008; Sandelowski, 1995). A critical component of preparation in
qualitative research using semi-structured interviews is the development of the interview
guide (Minichiello et al., 1995). The interview guide underpins the interview process, and
therefore influences subsequent research stages (Minichiello et al., 1995). Given the range of
considerations related to interviewing an individual with ASD (such as discomfort discussing
certain topics, preference to discuss topics of interest to them), a strong interview guide is
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likely to help researchers focus on these aspects rather than on practical components of the
interviews (e.g., appropriate wording of interview questions).
Participant recruitment.
Effective recruitment strategies are another critical component of all research studies,
as recruitment of an appropriate sample is a founding element to valid research data
(Minichiello et al., 1995). Traditionally, recruitment of participants has relied on flyers,
posters, and information in community newsletters (Minichiello et al., 1995). However, there
may be various barriers to using traditional approaches when recruiting individuals with ASD
given that responding to such material requires a willingness to engage socially (usually by
phone contact) with the researchers. Social discomfort inherent to such engagement may
present as a barrier to some individuals with ASD signing up for the study.
There may also be barriers to utilising such approaches when recruiting families of
individuals with ASD. First, families living with ASD may frequently receive invitations to
participate in research and, given the impersonal nature of traditional recruitment
approaches, they may be less likely to read and respond to them (Krogh, & Lindsay, 1999).
Additionally, responding to a study flier is unlikely to be a priority for families living with
ASD, given they are busy with the pressures of having a family member with ASD in
addition to the usual stressors of family life (Heiman, & Berger, 2007; Macks, & Reeve,
2007; Pakenham, Samios, & Sofronoff, 2005). Further, there is the possibility of recruiting a
skewed sample when relying on these approaches as ‘high-functioning’ families may be more
likely to respond (Kirkland, 2012).
Obtaining Informed and Voluntary Assent/Consent.
Obtaining informed and voluntary consent is a necessary component of all research
(Agre, & Rapkin, 2003). It ensures that individuals understand the study aims, the
commitment of being involved in the study, any potential risks and benefits of being
involved, and the expected outcomes of the research (Agre, & Rapkin, 2003; van den
Hoonaard, 2002). Further, informed consent is an ongoing process, rather than a time-limited
event, and it is best sought at all stages of research (van den Hoonaard, 2002)
Whilst parents/carers of individuals with ASD are likely to be the family members who
initially show interest in the study, it is important to ensure they do not provide consent on
behalf of other members of their family. Individuals with ASD (Cocks, 2008) and children
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(e.g., neurotypically developing [NTD] siblings) (Mishna et al., 2004; Potter, & Hepburn,
2005) may be particularly vulnerable to having their consent provided for them (Cocks,
2008). Similarly, while parental/carer consent is generally the primary requirement needed
for children to be involved in research, this should not replace obtaining assent from the
individuals with ASD and children themselves (Dockett et al., 2009).
Data collection
Appropriate interview settings.
Semi-structured interviews are often conducted within the family home in this research
area (Mascha, & Boucher, 2006). Benefits of this approach include avoiding connotations of
a clinical assessment; promoting familiarity for participants; and gaining a unique
understanding of family dynamics (Mascha, & Boucher, 2006).
The main challenge of conducting interviews within the family home is ensuring
interviews are completed in an appropriate private space in order to maintain participant
confidentiality (Mascha, & Boucher, 2006). Participants may not recognise the importance of
conducting the interviews in a private space; saying their family is ‘open’ with discussing all
issues in front of each other (Dockett et al., 2009). If this is the case, it is important to discuss
the need for participant confidentiality. Other possible drawbacks of conducting interviews
within the family home include safety issues and practicalities of travel for researchers
(Minichiello et al., 1995).
Practicalities of conducting interviews.
Numerous practical issues need to be considered when conducting qualitative research
with families living with ASD. Such issues include organising interviews at an appropriate
time of day for participants; allowing ample time to travel to scheduled interviews;
conducting interviews at an appropriate pace; and considering the most appropriate method of
recording the interview (e.g., scribing, voice-recording, or video-recording). Consideration of
such issues during the planning stages of research will help facilitate effective interviews.
Additionally, it may be necessary to reflect on the processes in place during the data
collection stages and make appropriate changes if warranted.
The skill base of interviewers is an important consideration in all qualitative research
(Brinkmann, 2007). Generally it is recommended that, at a minimum, interviewers are well
acquainted with the interview guide and familiar with the interview process (Brinkmann,
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2007; Minichiello et al., 1995). Additionally, personality characteristics such as patience, an
open and empathetic attitude, and an ability to listen are highly valued (Brinkmann, 2007). In
this context, it is also important that researchers have a clear understanding of the
characteristics of ASD and how these may present in participants (Cocks, 2008; Krogh, &
Lindsay, 1999).
Data analysis
Accurate analysis and interpretation of data.
In qualitative research, data analysis and interpretation are overlapping, yet
conceptually different, processes. More specifically, qualitative analysis involves the
breaking-down of data, whereas qualitative interpretation illuminates a new way of
understanding the data while remaining faithful to the original data (van den Hoonaard,
2002). Importantly, the analysis and interpretation stages of qualitative research are
influenced by all other stages of research including preparation, data collection, transcribing,
and reading of transcripts (van den Hoonaard, 2002).
Issues to be considered during data analysis and interpretation include considering
transcribing as an integral component to the data analysis process; reflecting on what
participants discuss as well as issues they do not discuss in interviews; and having multiple
researchers involved in the analysis and interpretation of data.
Involving participants in data analysis.
Involving participants in data analysis is a relatively recent concept (Dockett et al.,
2009). The rationale behind involving participants in data analysis is to ensure data is
accurate (Dockett et al., 2009) and is in line with the process of ongoing informed consent
(van den Hoonaard, 2002). There are benefits to including participants in data analysis such
as giving participants the opportunity to reflect on their interviews and brainstorm ‘themes’
emerging from their interviews, and developing an appreciation of the research process
(Dockett et al., 2009). Further, some participants may find such involvement to be rewarding
and/or therapeutic (Dockett et al., 2009).
One challenge of involving participants in data analysis processes is the possibility that
participants may reflect on certain things they had said (particularly discussion of negative
aspects of living with ASD) and express a desire for such aspects of the interview to not be
included in analysis (Barbour, 2000). Another challenge may be participants asking to read
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other family members’ transcripts; particularly parents asking to read their children’s
transcripts. Strategies to manage these challenges include normalising experiences of
discomfort when reading transcripts; discussing the use of de-identified data when reporting
results; discussing the rights of participants to withdraw consent from the study; and
discussing the rationale regarding not allowing participants to read others’ transcripts (i.e.,
participant confidentiality).
Dissemination of findings
Effective communication of research findings.
The communication of qualitative research studies is traditionally confined to academic
journal articles and/or conference proceedings (Keen, & Todres, 2007). This can often limit
the application of research findings in facilitating positive change for the lives of those
impacted by the research - in this case families living with ASD. Put another way, the
dissemination of research findings to practice is often seen as a task beyond the research
process (Keen, & Todres, 2007). However, we recommend considering the dissemination of
research findings as an integral component of the research process (see Figure 1).
The criteria on which dissemination strategies should be based is the intended target
audience of the research. Target audiences for research focusing on individuals with ASD
include families, clinicians, health practitioners, teachers, policy makers, and so on.
Therefore, dissemination strategies may include a range of approaches from presenting at
local ASD community groups to presenting to key stakeholders such as governments and
other policy makers.
Providing feedback to participants.
Communicating feedback to participants about the results of the study is not considered
a necessary component of the research process. However, there may be a range of benefits of
doing so. First, feedback provides participants with findings of the study and overall
outcomes of the research (e.g., policy changes, publications, funding, etc.) which they may
not otherwise have learned. Additionally, families living with ASD who participate in ASD
research are likely to have a genuine interest in the research outcomes and therefore
appreciate feedback. Feedback also acknowledges the significant commitment of
participating in research and may facilitate participants having positive experiences of being
involved in qualitative research. Further, providing feedback to participants may help
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consolidate research findings for the researcher and highlight the issues of importance for
families living with ASD (Keen, & Todres, 2007). Feedback about research findings and
outcomes may occur periodically or at the conclusion of the research, depending on the
nature of the project.
Researcher health
Importance of self-care.
Self-care involves a range of activities aimed to facilitate physical, emotional and
psychological wellbeing, such as exercise, social activities, hobbies, and travelling. The
importance of self-care for qualitative researchers investigating emotionally laden topics is
recognised, however often overlooked (Killen, 1998; Rager, 2005a, 2005b). Researcher self-
care is imperative across all aspects of the research process.
In discussing the potential for emotional effects of conducting qualitative research with
families living with ASD, it is not our intention to recommend researchers guard against all
emotional reactions to research. On the contrary, we recognise the important role of emotion
in qualitative research (Brinkmann, 2007; Rager, 2005a, 2005b), such as the ability to
empathetically consider the psychological world of participants. Rather, we recommend that
researchers utilise strategies to manage the possible negative emotional impacts of
conducting qualitative research. Such strategies include being involved in debriefing sessions,
maintaining a journal, and organising interviews with adequate spacing to reduce the
intensity of interviewing commitments and allow ample time for reflection between
interviews.
Developing and maintaining healthy boundaries.
In qualitative research, it is common for researchers to negotiate multiple roles (such as
data collector and empathetic listener) (Lavis, 2010). In fact, these multiple roles are often
considered necessary for effective qualitative research whereby the researcher must conduct
ethical practices while simultaneously developing authentic relationships with participants
(Lavis, 2012). Developing and maintaining healthy boundaries around researcher roles is
critical for conducting research in this field, given the potential for role confusion that may
result when involving children and/or individuals with disabilities in research (Brinkmann,
2007). Boundary confusion is a bidirectional process whereby misunderstandings from either
the researchers or participants can result in inappropriate roles (Brinkmann, 2007). Strategies
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to help maintain healthy boundaries include a clear understanding for both researchers and
participants about the role of the researcher and limitations to this role, and utilising various
monitoring strategies such as other researchers attending the interviews or reading the
transcripts.
Table 1 provides detailed recommendations based on the issues discussed above. The
recommendations are based on the literature and experiences from the authors’ involvement
in qualitative research focusing on families living with ASD.
Conclusion
Conducting qualitative research with individuals with ASD and their families is not
easy, as highlighted by the range of challenges and considerations discussed throughout this
paper. However, with these challenges also comes a multitude of rewards; predominantly the
opportunity to meet incredible individuals and hear their stories. Just as we attempt to do
justice to the significance of participants’ experiences during the write-up of empirical
papers, we aim to honour the significance of our research practices by sharing our
experiences with other researchers with this paper. We envisage that this paper will
contribute to existing knowledge regarding conducting quality qualitative research with
individuals with ASD and their families and promote more understanding of ASD in general.
2 9 9
Table 1: Recommendations
Research stage Recommendation General rationale Rationale for ASD
a research
1a. Preparation:
Interview guide
development
Include an introductory
statement.
An introductory statement before commencing the
interview can be helpful in reminding participants about
the general content of the interview and the expected
length of the interview. Including the introductory
statement will facilitate a clear and concise introduction
and ensure its inclusion in the interview process.
An introductory statement may be particularly relevant for
individuals with ASD given their general preference for
preparedness (Solomon, Miller, Taylor, Hinshaw, & Carter,
2012).
1b. Preparation:
Interview guide
development
Begin interviews with a
‘warm-up’ question.
A ‘warm-up’ question will ‘set the scene’ for the interview
whilst simultaneously allowing participants to experience
mastery and relax into the interview. Example ‘warm-up’
questions may be ‘Tell me who is in your family’ or ‘What
activities do you like doing with your family?’
Initial nervousness may be of particular relevance when
interviewing individuals with ASD due to the social and
communicative impairments associated with their condition
(Cridland, Caputi, Jones, & Magee, 2013a; Solomon, Miller,
Taylor, Hinshaw, & Carter, 2012).
1c. Preparation:
Interview guide
development
Provide a prelude to
challenging questions.
A prelude prepares participants for the upcoming question
and normalises any feelings of confusion or discomfort
they may have. An example of a prelude is, ‘Some people
find the next few questions difficult…’
There are topics that individuals with ASD are likely to find
challenging to talk about, such as discussing abstract
concepts; social difficulties; emotions; perspective talking;
etc. A prelude to challenging questions may help prepare
participants with ASD and their families for questions they
may find difficult.
1d. Preparation:
Interview guide
development
Structure interview
guide to have
challenging questions
followed by easier
topics.
Oscillating between challenging and less challenging
topics can help reduce the emotional and psychological
demands of the interview on participants.
Efficacious ‘easy’ questions should either aim to foster
mastery and relate in some way to the research topic
(Minichiello et al., 1995). ‘Easy’ questions for individuals
with ASD about hobbies or special interests are best avoided
as they may lead to lengthy conversations of little relevance
to the focus of the study. It may also be difficult to redirect
participants back to the interview.
1e. Preparation:
Interview guide
development
Develop single-faceted
questions
Single-faceted questions are easier for participants to
understand and accurately interpret. Examples of single
faceted questions are, ‘What are your favourite subjects at
school?’ and ‘How do you find homework?’. This is
opposed to a multifaceted format; ‘What are your favourite
subjects at school and how do you find homework?’.
Single-faceted questions suit the processing style of
participants with ASD and facilitate accurate interpretation
of the question (Cridland et al., 2013a; Solomon, et al.,
2012).
3 0 0
Research Stage Recommendation General Rationale Rationale for ASD research
1f. Preparation:
Interview guide
development
Use both positively and
negatively framed
questions
Using positively and negatively framed questions
facilitates discussion of both rewarding and challenging
experiences, attitudes, and feelings, which contributes to a
balanced understanding of issues.
It is recognised that living in a family with ASD involves
both rewarding and challenging experiences, attitudes and
feelings (Cridland, Jones, Magee, & Caputi, 2013b; Davis,
& Gavidia-Payne, 2009; Pakenham et al., 2005) and these
issues need investigation. In doing so, it may be important to
acknowledge that not all participants will share the range of
experiences. A prelude such as, ‘Some people find
rewarding aspects of living with ASD. Have you
experienced this?’ may help normalise discussion of living
with ASD and encourage open discussion.
1g. Preparation:
Interview guide
development
Avoid using leading
questions
All research studies have aims and hypotheses; however it
is important that interview questions do not elicit
responses solely in support of these hypotheses. An
example of a leading question in a study focusing on the
challenges of transitioning to high school would be, ‘What
have been the hardest parts of transitioning to high
school?’. An example of a ‘neutral’ question for
investigation of this issue would be, ‘What has been your
experience of transitioning to high school?’
When responding to questions, individuals with ASD may
be more likely to provide answers that are specific the
question posed rather than using that question as a platform
to elaborate on, as NTD b participants may. Therefore,
continuing with the current example, if participants with
ASD are asked about the challenges of high school they are
likely to only discuss challenges even if they think there are
also positive aspects (Cridland et al., 2013a).
1h. Preparation:
Interview guide
development
Pilot test the interview
guide
Pilot testing the interview guide is helpful in estimating
time needed to conduct the interview and promote
researcher familiarity with the interview guide.
Pilot testing with an individual with ASD may be useful in
identifying questions that may be confusing or open to
misinterpretation.
1i. Preparation:
Participant
recruitment
Provide multiple
methods of contact
when advertising the
study
Providing multiple methods of contacting the research
team gives participants flexibility in response options.
Methods of contact may include; text message services,
email, or social media such as Facebook.
Some methods of contact (such as emails) may be less
socially demanding on individuals with ASD, which may
encourage response rates to the study. Additionally, options
such as text messages may be less time demanding for
family members.
1j. Preparation:
Participant
recruitment
Provide clear and
detailed information
about the study in
recruitment
information
Providing participants with transparent and detailed
information about the study during recruitment may
encourage potential participants to respond to the study
advertisement. Such information may include study aims,
participant requirements, study timeframe (e.g.,
recruitment cut-off, data collection phases, etc), and
expected benefits to participants.
Providing detailed study information when recruiting
individuals with ASD may improve response rates. This is
likely to be associated with the social and communicative
impairments inherent with ASD.
3 0 1
Research Stage Recommendation General Rationale Rationale for ASD research
1k. Preparation:
Participant
recruitment
Employ some non-
traditional recruitment
approaches
Employing some non-traditional recruitment approaches
will increase the number of potential participants that the
study is advertised to.
Approaches that may be effective when recruiting families
living with ASD include attending community ASD support
groups; outlining the study to school teachers in order for
them to personally provide information to families of
students with ASD enrolled in their school; and snowballing
from recruited participants.
1l. Preparation:
Participant
recruitment
Include information
about the expected
positive outcomes of
being involved in the
study
Being involved in qualitative research has been found to
be a rewarding and enriching experience for participants
(Dickson-Swift et al., 2007, 2008; Dockett et al., 2009;
Rager, 2005a, 2005b). Sharing this information with
potential participants may increase their interest in being
involved in the study.
The positive outcomes of being involved in qualitative
research for families living with ASD may include having an
opportunity to discuss issues important to them; developing
greater awareness and understanding of family member’s
perspectives, and having an opportunity to ‘give back’ to
the ASD community.
1m Preparation:
Obtaining informed
and voluntary
assent/consent
Organise a
‘preliminary meeting’
with potential families
to outline the study
A ‘preliminary meeting’ is useful for providing potential
participants with written and verbal information about the
study and requirements of participants (e.g., time
commitment). It is also useful for answering participant
questions, and ensuring research eligibility criteria are
satisfied.
During this meeting it may be useful to ask what
terminology a family uses to refer to the ASD diagnosis
(e.g., Autism, Asperger’s, Aspie, etc.) and ensure that all
relevant family members have knowledge of the ASD
diagnosis.
1n. Preparation:
Obtaining informed
and voluntary
assent/consent
Obtain informed assent
from child participants
While written assent from child participants is not always
necessary to fulfil ethical requirements of research (Agre,
& Rapkin, 2003; van den Hoonard, 2002), its inclusion is
important to ensure all participants are voluntarily
participating in the study.
Child participants in this research area include children with
ASD and NTD siblings. In utilising assent forms for
children with ASD a ‘checklist’ format may be appropriate
as participant requirements can be clearly outlined.
1o. Preparation:
Obtaining informed
and voluntary
assent/consent
Remind participants of
the research aims and
participant
commitments at each
contact
Discussing research aims and participant commitments
regularly facilitates informed and voluntary assent/consent.
These discussions may involve providing participants with
a study information sheet and/or consent form and asking
if they would like to continue their involvement in the
study.
Ongoing consent is of particular relevance when involving
individuals with ASD in research, as they may have
additional queries about the study which they may not ask
unless overtly given the opportunity.
3 0 2
Research Stage Recommendation General Rationale Rationale for ASD research
1p. Preparation:
Obtaining informed
and voluntary
assent/consent
When conducting
research with families,
ensure consent is
obtained from
individual family
members
Whilst parents/carers may be the family members who
initially show interest in the study, it is important that they
do not provide consent on behalf of other members of their
family.
Additionally, we advise against requiring all family
members to be involved in the study in order for a family
to be eligible for study participation. This flexibility will
reduce the possibility of some family members feeling
pressured to provide consent and also reduce the number
of families deemed ineligible for the study.
Individualised consent procedures are equally important in
families living with ASD. Further, the literature highlights
that individuals with ASD (Cocks, 2008) and children (e.g.,
NTD siblings) (Mishna, et al., 2004; Potter & Hepburn,
2005) are particularly vulnerable subgroups in having their
consent provided for them.
1q. Preparation:
Obtaining informed
and voluntary
assent/consent
When conducting
research with families,
clearly outline
confidentiality
procedures
Clearly outlining confidentiality procedures ensures
participants are aware that information provided during
interviews will not be shared with other family members
(unless the study has an open nature). This awareness may
encourage openness during the interviews and prevent
participants asking about other family members’
responses.
Participants may feel reluctant to speak openly about the
challenging aspects of living with ASD if they are uncertain
whether their interviews will be shared with other family
members. This may result in denial or minimisation of such
topics.
2a. Data Collection:
Appropriate
interview settings
Ensure home
interviews are
conducted in an
appropriate private
space.
Conducting home interviews in an appropriate private
space, such as a quiet living area or study, ensures
confidentiality of information shared. Additionally, there
will be fewer distractions for participants and a quiet
environment for clear recording (if utilised).
Conducting home interviews in a private space may
facilitate discussion of challenging issues, such as the
difficulties of living in a family with ASD, which
participants may otherwise feel hindered to discuss openly if
they felt family members could overhear.
2b. Data Collection:
Appropriate
interview settings
Consider using
alternative venue if
home interviews are
not appropriate
Alternative venues should be considered if there is no
appropriate space within the family home (e.g., open plan
living, strained family relationships, etc.), or if participants
and/or the researcher do not feel comfortable/safe
conducting the interview within the home. Suitable venues
include a quiet room in the researchers’ workplace, or a
bookable room in a community building such as a library.
Alternative venues should be considered if interviews
involve discussion of difficult topics associated with living
with ASD, and the researcher or participant feel it is not
appropriate to discuss these issues within the family home.
Relevant safety issues include unexpected responses or
behavioural reactions. For example, a participant may
become highly aroused if feeling confused about a question
or feeling uncomfortable about discussing a particular topic.
Strategies to promote a safe environment include conducting
interviews with two researchers (a primary researcher
conducting interview and a second to observe/scribe); and/or
ensuring a parent/carer is available but not present.
3 0 3
Research Stage Recommendation General Rationale Rationale for ASD research
2c. Data Collection:
Practicalities of
conducting
interviews
Schedule interviews at
a preferred time for
participants
Participants are more likely to be engaged in the interview
process if it is conducted at a time suitable for them.
In order to conduct interviews at appropriate timeslots,
researchers may need to be flexible, which may include
conducting interviews outside of business hours (such as
weekends).
The engagement of participants with ASD may be
particularly influenced by the timing. For example,
mornings may be identified as a ‘good’ time for an interview
rather than shortly after school or work when they may be
stressed or tired.
Additionally, contacting participants with ASD before the
interview to check the arranged time is still appropriate is
recommended. Rescheduling if needed is important as
conducting an interview with an individual with ASD who is
not in an appropriate frame of mind, may result in tainted
responses (e.g., negatively framed responses or lack of
responses).
2d. Data Collection:
Practicalities of
conducting
interviews
Allow ample time
when travelling to
interviews to ensure
punctuality
Apart from a general sign of courtesy, punctuality portrays
a professional attitude towards the research. Arriving on
time is also a sign of respect for the participant’s time
commitment of being involved in the study.
Punctuality may be of particular relevance for interviews
with individuals with ASD, as they may become agitated or
upset if the researcher is late.
2e. Data Collection:
Practicalities of
conducting
interviews
Take time to build
rapport with
participants
The importance of rapport building in qualitative research
is well established (Brinkmann, 2007; Lavis, 2010; van
den Hoonaard, 2002). However, in building rapport it is
important to not just ‘do’ rapport, where the researcher
engages in ‘faking friendship’ in order to obtain
knowledge from the participant (Brinkmann, 2007).
Rapport building is essential in this research area given the
highly personal nature of research topics. Rapport with
families living with ASD is likely to be established by
showing a genuine interest in their experiences; having an
open attitude throughout the interview; and regarding the
participant as the expert on the interview topic.
2f. Data Collection:
Practicalities of
conducting
interviews
Be aware of your rate
of speech when asking
interview questions
Asking interview questions in a measured, slow pace
facilitates accurate interpretation.
A slower pace of information presentation has been shown
to suit the processing style of individuals with ASD
(Deruelle, Rondan, Gepner, & Fagot, 2006; Sachse et al.,
2013; Smith Myles, & Simpson, 1998).
Related to this, individuals with ASD may require a longer
length of time to provide an answer to interview questions
(Deruelle et al., 2006) and researchers should allow ample
time for a participant to respond before checking-in that they
understood the question.
3 0 4
Research Stage Recommendation General Rationale Rationale for ASD research
2g. Data Collection:
Practicalities of
conducting
interviews
Consider video
recording interviews
The benefit of using video-recordings over voice-
recordings is the ability to analyse both verbal and visual
information (e.g., facial expression, hand gestures, body
movements, etc).
Video-recording interviews is an emerging methodological
approach in this field (Meirsschaut, Roeyers, & Warreyn,
2011; Mossman-Steiner, 2011; Naber et al., 2008). The
benefits of this approach when interviewing participants
with ASD includes ability to analyse inconsistencies
between verbal responses and body language, individualised
uses of hand gestures, and use of eye-contact.
2h. Data Collection:
Practicalities of
conducting
interviews
Leave recording device
going until the
interview has come to
an absolute conclusion
Participants may continue to speak after the last interview
question and useful information may be missed if not
recorded.
Participants often continue to share their experiences of
living in a family with ASD after the interview.
3a. Data Analysis:
Accurate analysis
and interpretation
of data
Transcribe interviews
rather than utilising
scribes
Transcribing has been considered as an integral component
of preliminary data analysis (van den Hoonaard, 2002).
Transcribing is also an important way to improve
interview techniques, such as the wording of questions,
smooth transitioning between topics, and beginning and
concluding the interview.
Improving interview techniques as a result of the
transcribing may be particularly important when
interviewing individuals with ASD given the heightened
importance of appropriate wording of questions and suitable
beginnings and conclusions of interviews with these
individuals.
3b. Data Analysis:
Accurate analysis
and interpretation
of data
Attend to issues that
participants do not
discuss
There is a focus on what a participant says in qualitative
research. However, it is also important to reflect on issues
participants do not discuss. Participants may not discuss
issues due to legitimate irrelevance of a topic, minimal
rapport with the researcher, or a desire to portray a certain
image during the interview.
Participants may find it difficult or even taboo to discuss the
challenges of living in a family with ASD. Similarly,
participants may wish to portray an image of resilience or
positivity by focusing on the rewarding aspects of living in a
family with ASD.
3c. Data Analysis:
Accurate analysis
and interpretation
of data
Have multiple
researchers code the
data
The credibility of qualitative data analysis is improved
with multiple researchers coding the data (Barnes, 1992;
Braun, & Clarke, 2006). The process of coding with
multiple researchers includes a primary researcher
conducting, transcribing, and analysing the data, while
other members of the research team read, and
independently code the data for comparison (Braun, &
Clarke, 2006).
Multiple coders is important when conducting research with
families living with ASD because it is common for
researchers in this field to have strong connections and
investment with the research topic (Potter, & Hepburn,
2005) and this background may interfere with objective data
analysis. It is important that researchers are aware of their
potential for bias (Brinkmann, 2007; van den Hoonaard,
2002).
3 0 5
Research Stage Recommendation General Rationale Rationale for ASD research
3d. Data Analysis:
Accurate analysis
and interpretation
of data
Use analytical
techniques that model
the characteristics of
family data.
In using analytical techniques that model the
characteristics of family data researchers are able to gain
insights into interpersonal relationships within the family,
in addition to the perceptions from individual family
members.
In researching families living with ASD there may be
discrepant perceptions across family members (e.g., a
sibling reporting that they take on significant caregiving
responsibilities, while parental reports indicate they do not
contribute enough). These issues are worthy of investigation.
3e. Data Analysis:
Involving
participants in data
analysis
Include participants in
data analysis
Including participants in data analysis may involve giving
participants the opportunity to read their own transcripts
(member checks); and encouraging participants to
brainstorm ‘themes’ emerging from their interviews. In
addition, participants may be invited to read drafts of
reports and provide feedback to researchers.
Including individuals with ASD and their families in data
analysis is in line with recommendations in the literature
(Cocks, 2008; Dockett et al., 2009; Mishna et al., 2004). The
benefits of including these participants in data analysis
include giving participants the opportunity to reflect on their
interviews; and developing ownership of their data and an
appreciation of the research process. Further, some
participants may find this process rewarding and therapeutic.
4a. Dissemination of
Findings:
Effective
communication of
research findings
Provide feedback about
the study’s findings to
relevant individuals
and community groups
The benefits of providing feedback to relevant individuals
and community groups include sharing of research
information and fostering networks which may be utilised
in future research endeavours.
Relevant individuals and community groups for research
focusing on individuals with ASD may include local ASD
community groups, ASD research centres, as well as
mainstream and ASD specific schools.
4b. Dissemination of
Findings:
Effective
communication of
research findings
Consider target
audience when
choosing journals to
publish research
findings
To facilitate effective communication of research findings,
it is important to consider the intended target audience of
the research when choosing journals to publish in rather
than focusing on other research criteria such as the prestige
of the journal. Additionally, be prepared that the target
audience may change over the course of the research.
Target audiences for research focusing on individuals with
ASD may include families, clinicians, health practitioners,
teachers, policy makers, etc.
4c. Dissemination of
Findings:
Effective
communication of
research findings
Consider presenting
findings to community
members.
Academic journals and conferences have their place in
disseminating research findings, however it may be
efficacious to also pursue other avenues when
disseminating findings to the broader community. Such
avenues may include community forums, radio stations,
and newspapers and/or television news programs.
When disseminating research findings to community
members interested in ASD research it may be efficacious to
present findings at local ASD community groups, forums,
etc. Additionally, when utilising mainstream media
avenues, it may be useful to advertise upcoming programs at
the local ASD community groups.
3 0 6
Research Stage Recommendation General Rationale Rationale for ASD research
4d. Dissemination of
Findings:
Providing feedback
to participants
Provide participants
with written feedback
about the study’s
findings
Information sheets are an appropriate method for
providing feedback to participants because they provide a
succinct outline of information, they are a tangible
resource for participants to refer to, and they are
economical and practical.
The main drawback of information sheets is that they may
be considered impersonal.
When developing information sheets for individuals with
ASD, a structured format (i.e., use of headings, bullet points,
etc) may facilitate their understanding of the information.
Additionally, it may be useful to provide information about
local ASD community groups for participants who are not
linked in with support services.
4e. Dissemination of
Findings:
Providing feedback
to participants
Provide participants
with the opportunity to
come to a group
feedback session
Group feedback sessions are useful for conveying in-depth
findings and provide participants with an opportunity ask
questions and provide comments.
Considerations when conducting feedback sessions for
families include running sessions at various times/dates to
cater for commitments such as work and after school
activities; providing a venue with suitable child minding
facilities; and providing written information for
participants who were unable to attend.
A secondary benefit of group feedback sessions is an
opportunity for participants to interact with other families
living with ASD. The social support provided by such
feedback sessions may be equally as important to
participants as receiving information about the outcomes of
the study.
4f. Dissemination of
Findings:
Providing feedback
to participants
Reflect on the impact
of being involved in
the study with
participants
Reflections from the research team may include
professional and/or personal insights, challenges and
rewards of conducting the research. Additionally,
reflections from the research team acknowledge the
significance of participants’ sharing their experiences for
the research.
Qualitative research investigating the experiences of families
living with ASD is likely to involve participants sharing a
range of highly personal experiences meaning reflections
from research team about their experiences of being
involved in the research may be particularly warranted.
5a. Researcher Health:
Importance of self-
care
Be involved in
debriefing sessions to
manage the emotional
impact of conducting
qualitative research
Debriefing sessions allow researchers to reflect on
challenging experiences, discuss ways of improving
research processes, and experience moral support.
Debriefing personnel may include research team members
and/or supervisors. Importantly, debriefing sessions should
not replace professional support, which may be necessary
if researchers are seriously impacted from the study.
Researchers should not underestimate the emotional impact
of conducting interviews with families living with ASD.
Reasons for this include listening to difficult experiences,
being with participants who are emotional or have
behavioural outbursts, and providing a supportive and non-
judgemental attitude throughout interviews.
5b. Researcher Health:
Importance of self-
care
Maintain a journal to
manage the emotional
impact of conducting
qualitative research
Journal keeping has been shown to help manage the
emotional impact of being involved in qualitative research
and also promote reflective thinking that facilitates data
interpretation (Rager, 2005b).
As outlined in section 5a., managing the emotional impact of
conducting interviews with families living with ASD is an
important issue in this research area. Journal keeping may
be one strategy to assist with this.
3 0 7
Research Stage Recommendation General Rationale Rationale for ASD research
5c. Researcher Health:
Importance of self-
care
Space interviews apart
to manage the
emotional impact of
interviewing
Organising interviews over an extended period may
contribute to researcher self-care as it reduces the intensity
of conducting the interviews and allows time for reflection
between interviews.
Spaced interviews may be particularly warranted when
conducting research with families living with ASD given the
range of emotionally laded topics that may be inherent to the
research topic.
5d. Researcher Health:
Developing and
maintaining healthy
boundaries
Be aware of the
potential for boundary
confusions
Boundary confusion can occur when researchers or
participants become unclear around the researchers’
primary role (which is to collect data rather than being a
friend or clinician). The potential for boundary confusion
is high in qualitative research due to the personal nature of
research topics and the supportive method in which they
are conducted.
Strategies to minimise boundary confusion include clearly
outlining the roles of the researcher prior to interviews,
having multiple researchers attend interviews, having
transcripts read by other researchers to monitor boundary
maintenance, and ongoing debriefing sessions for
researchers.
Being aware of the potential for boundary confusion may be
particularly important when conducting qualitative research
with families living with ASD. Firstly, children and
individuals with ASD may find it difficult to understand the
unique role of a researcher, particularly when interviews are
conducted with a supportive nature and within the family
home. Secondly, the emotionally laden topics that are often
inherent to this research area may lead participants to
become confused about the researchers’ role. Additionally,
researchers themselves may become confused about their
role, particularly if they have personal connection to the
research topic and/or professional roles other than a
researcher (e.g., counsellor, support worker, teacher, etc.).
5e. Researcher Health:
Developing and
maintaining healthy
boundaries
Consider the
differences in power in
the roles of researchers
and participants
In most research, there is a power difference between
researcher and participant due to the researcher’s in-depth
knowledge of the particular research area. However, in
qualitative research it is acknowledged, and even
embraced, that participants are the expert in their own right
as it is their personal experiences and opinions that are
under investigation (Brinkmann, 2007).
It may be helpful to acknowledge the participants’ unique
role as ‘expert’ regarding being an individual/family
member living with ASD. Such acknowledgement may
facilitate participants’ sense of mastery and highlight the
value of sharing their experiences in the research.
a ASD: Autism Spectrum Disorder
b NTD: Neurotypically Developing
308
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possibilities. Qualitative Research in Psychology, 2(4), 281-307.
Rager, K.B. (2005a). Compassion stress and the qualitative researcher. Qualitative Health
Research, 15, 423-430.
Rager, K.B. (2005b). Self-care and the qualitative researcher: When collecting data can
break your heart. Educational Researcher, 34(4), 23-27.
Sachse, M., Schlitt, S., Hainz, D., Ciaramidaro, A., Schirman, S., Walter, H., et al. (2013).
Executive and visuo-motor function in adolescents and adults with autism spectrum
disorder. Journal of Autism and Developmental Disorders, 43, 1222-1235.
Sandelowski, M. (1995). Qualitative analysis: What it is and how to begin. Research in
Nursing & Health, 18(4), 371-375.
Seligman, M., & Darling, R.B. (2007). Ordinary Families, Special Children: A Systems
Approach to Childhood Disability. New York: Guilford Press.
Smith Myles, B.S., & Simpson, R.L. (1998). Asperger Syndrome: A Guide for Educators
and Parents. Austin: PRO-ED, Inc.
Solomon, M., Miller, M., Taylor, S.L., Hinshaw, S.P., & Carter, C.S. (2012). Autism
symptoms and internalizing psychopathology in girls and boys with autism
spectrum disorders. Journal of Autism and Developmental Disorders, 42, 48-59.
van den Hoonaard, W.C. (2002). Walking the Tightrope: Ethical Issues for Qualitative
Researchers. Buffalo: University of Toronto Press.
312
Appendix B: The 20 th
International Congress on Personal Construct Psychology
Cridland, E.K., Caputi, P., Jones, S.C., & Magee, C.A. (2013, July). Understanding
high functioning autism during adolescence: A personal construct theory
approach. Paper presented at the 20 th
International Congress on Personal
Construct Psychology, Sydney, Australia.
Abstract
Preliminary research towards applying Personal Construct Theory (PCT)
concepts and methodologies to understanding individuals with High
Functioning Autism (HFA) have suggested its utility for both research and
clinical interventions. The developmental period of adolescence has also
been outlined according to PCT. Importantly, however, PCT has not been
applied to the more specific subgroup of adolescents with HFA, despite
various theoretical tenets suggesting its utility. In addressing this research
gap, we consider the following adolescent developmental tasks with
particular relation to adolescents with HFA; (i) functioning within the
increasingly complex world of adulthood, (ii) identity development, and (iii)
development of higher order processing styles (including abstract thinking
and flexible processing). These issues are described using PCT concepts.
We consider ways to support individuals, and families, living with
adolescents with HFA.
3 1 3
Appendix C: Three Minute Thesis Finals Competition Slide
Cridland, E.K., Caputi, P., Jones, S.C., & Magee, C.A. (2013, October). Puberty blues? The experience of adolescence for individuals with
Asperger’s syndrome and their families. Presented at the University of Wollongong Three Minute Thesis Finals Competition, Wollongong,
Australia.
314
Appendix D: The 49th Australian Psychological Society Annual Conference
Cridland, E.K., Caputi, P., Walker, B., Jones, S.C., & Magee, C.A. (2014, September).
The use of dependency grids when working clinically with families living with
autism spectrum disorder. Workshop presented at the 49th Australian
Psychological Society Annual Conference, Hobart, Australia.
Abstract
The dependency grid is a clinical tool associated with Personal Construct
Psychology used to explore the resources individuals use to cope with
challenges. When used with families, dependency grids facilitate
exploration of family interactions; roles; boundaries; and general
functioning, which are often otherwise difficult to convey. The method of
assessing family functioning provided by dependency grids may be
particularly useful for clinicians working with families living with Autism
Spectrum Disorder (ASD), as individuals with ASD often have difficulty
effectively communicating their needs and understanding their roles within
the family system. Additionally, the information provided by dependency
grids can facilitate treatment planning and evaluation. The aim of this
workshop is to provide participants with foundational knowledge about the
clinical application of dependency grids when working with families, with
particular attention to families living with ASD. In doing so, participants
will gain experience in administrating and analysing a dependency grid.
Family case studies completed by the presenters will also be discussed
throughout the workshop to facilitate learning. In addition, feedback from
families involved in dependency grid assessment and interventions will be
provided. The information and skills offered in this workshop will provide
participants with practical tools that they can utilise in their future clinical
work with families.
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Appendix E: The 22 nd
Annual PsychDD Conference
Cridland, E.K., Jones, S.C., Caputi, P., & Magee, C.A. (2013, December). Being a girl in
a boys’ world: Investigating the experiences of girls with autism spectrum
disorders during adolescence. Paper presented at the 22 nd
Annual PsychDD
Conference, Homebush, Australia.
Abstract
This study investigates the experiences of adolescent girls with Autism
Spectrum Disorders (ASD) during adolescence. Semi-structured interviews
were conducted with three mother-daughter dyads and two additional
mothers. A range of issues were highlighted covering physical, emotional,
social and sexual domains. Some of these issues were similar to those
experienced by boys with ASD during adolescence, such as negative
implications of late diagnosis, challenges of transitioning to and coping with
high school, ‘hands-on’ role of parents into adolescence, difficulties adjusting
to the increased demands of adolescent hygiene routines, and the importance
of learning personal boundaries in interactions with others. Other issues
discussed were of particular relevance to adolescent girls with ASD, such as
difficulties socialising with neurotypically developing girls, sex-specific
puberty issues, and sexual vulnerabilities. This study highlights an important
research area and is a preliminary step towards understanding the experiences
of adolescent girls with ASD and their families.
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Appendix F: DSM-V Diagnostic Criteria for Autism Spectrum Disorder
The following diagnostic criteria are from the DSM-V (American Psychiatric Association,
2013).
An individual must meet criteria (a), (b), (c), and (d):
(a) Persistent deficits in social communication and social interaction across contexts, not
accounted for by general developmental delays, and manifest by all 3 of the following:
1. Deficits in social-emotional reciprocity; ranging from abnormal social approach
and failure of normal back and forth conversation through reduced sharing of
interests, emotions, and affect and response to total lack of initiation of social
interaction.
2. Deficits in nonverbal communicative behaviours used for social interaction;
ranging from poorly integrated- verbal and nonverbal communication, through
abnormalities in eye contact and body-language, or deficits in understanding and
use of nonverbal communication, to total lack of facial expression or gestures.
3. Deficits in developing and maintaining relationships, appropriate to
developmental level (beyond those with caregivers); ranging from difficulties
adjusting behaviour to suit different social contexts through difficulties in sharing
imaginative play and in making friends to an apparent absence of interest in people.
(b) Restricted, repetitive patterns of behaviour, interests, or activities as manifested by at
least two of the following:
1. Stereotyped or repetitive speech, motor movements, or use of objects; (such as
simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic
phrases).
2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal
behaviour, or excessive resistance to change; (such as motoric rituals, insistence on
same route or food, repetitive questioning or extreme distress at small changes).
3. Highly restricted, fixated interests that are abnormal in intensity or focus; (such
as strong attachment to or preoccupation with unusual objects, excessively
circumscribed or perseverative interests).
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4. Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects
of environment; (such as apparent indifference to pain/heat/cold, adverse response
to specific sounds or textures, excessive smelling or touching of objects,
fascination with lights or spinning objects).
(c) Symptoms must be present in early childhood (but may not become fully manifest
until social demands exceed limited capacities).
(d) Symptoms together limit and impair everyday functioning.
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Appendix G: Subsystems with the Family System
The parental subsystem
The parental subsystem includes the interactions between mothers and fathers and their
children. The parental system can be further defined to describe ‘maternal’ (mother and
child), ‘paternal’ (father and child) subsystems. The parental subsystem has also been
referred to as the ‘executive’ subsystem given the hierarchical structure of most families
(Ferrari, & Sussman, 1987). The primary roles of parental figures are to provide
leadership and support for their children and the family system (FS) as a whole. The
parental roles are predominantly filled by the biological parents of children; however it is
increasingly recognised that these roles can be filled or partially filled by other figures such
as stepparents, extended family, and even siblings (Ferrari, & Sussman, 1987).
The spousal subsystem
The spousal subsystem refers to the relationship between partners (traditionally the
husband and wife) (Herbert, & Harper-Dorton, 2002). In a healthy spousal dyad both
partners experience a fulfilling relationship and share intimacy, support, and growth
opportunities with each other (Seligman, & Darling, 2007). Inherent to FS approaches, the
spousal subsystem is understood to have reciprocal influences on the other subsystems
within the system. For example, conflict within the spousal subsystem may cause tension
amongst the sibling and/or parental subsystems. Conversely, conflict within sibling or
parental subsystems’ is likely to increase spousal stress (Brown, 1999; Hales, & Glasscock,
1998). Importantly, spousal conflict or disagreement does not necessarily equate to poor
functioning of the FS.
The sibling subsystem
Sibling dyads are unique relationships; they are ascribed rather than selected relationships,
they involve both nurturance and conflict, and are typically the longest and most enduring
relationship across the lifespan (Orsmond, & Seltzer, 2007; Seligman, & Darling, 2007;
Vliem, 2009). The sibling relationship has a significant impact on child socialization and
makes it possible to express feelings and to experience friendships, loyalty, rivalry, and
support (Glasberg, 2000; Verte, Roeyers, & Buysse, 2003). The nature of sibling
relationships evolves throughout development (Vliem, 2009)
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Appendix H: The Fundamental Postulate and 11 Corollaries
The following information is based on Kelly’s (1955) seminal work, The Psychology of
Personal Constructs.
Fundamental Postulate
The Fundamental Postulate describes the anticipatory nature in which a person processes
their experiences, feelings, thoughts, and behaviours. In his own words, Kelly (1955)
wrote, “A person's processes are psychologically channelized by the ways in which he
anticipates events” (Vol 1., p.32). As a result, an individual’s sense making of their world
is considered to be constructed rather than inherent in events.
Construction Corollary
The Construction Corollary describes the constructive nature by which individuals
interpret their world. According to Personal Construct Theory (PCT), individuals are
fundamentally conservative in nature, meaning previous experiences are used as
templates to anticipate future events and situations. In describing this, Kelly (1955)
wrote, “A person anticipates events by construing their replications” (Vol 1., p.35).
The Individuality Corollary
The Individuality Corollary acknowledges the unique and individualised nature of
personal constructs. In describing this, Kelly (1955) wrote, “Persons differ from each
other in their construction of events” (Vol 1., p.38). That is, the individualised nature of
past experiences contribute to the development of unique construct systems, and
therefore unique anticipation of future events.
The Organization Corollary
According to PCT, personal constructs are organised into a network system. This
organisation is considered to facilitate efficient construing processes. In describing the
Organisation Corollary, Kelly (1955) wrote, “Each person characteristically evolves, for
his convenience in anticipating events, a construction system embracing ordinal
relationships between constructs” (Vol 1., p.38).
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The Dichotomy Corollary
Kelly (1955) considered constructs to be dichotomous in nature. This dichotomous
structure is important for understanding a constructs meaning; for example, ‘short’ is
only understood in relation to its opposite pole of ‘long’.
The Choice Corollary
The Choice Corollary describes the principles by which people use constructs to interpret
situations and inform their behaviours. This corollary posits that people generally employ
constructs that will expand or elaborate their current construction system, allowing for
greater understanding of the world.
The Range Corollary
The Range Corollary describes the relationships between constructs. More specifically, it
describes the way in which related constructs are linked in order to facilitate effective
construing. The range of constructs are considered to vary from broad or
‘comprehensive’ to narrow or ‘incidental’ in their application to other constructs.
The Modulation Corollary
The Modulation Corollary explains that constructs vary in their flexibility or the extent to
which they are open to change when applied to different experiences. In describing this,
Kelly (1955) wrote, “The variation in a person's construction system is limited by the
permeability of the constructs within whose range of convenience the variants lie”. (Vol
1, p.54).
The Fragmentation Corollary
The Fragmentation Corollary acknowledges that people can be inconsistent within
themselves. Furthermore, Kelly (1955) considered some degree of logical discontinuity
between constructions as a normal. Inconsistency or ‘fragmentation’ of personal
constructs can often result from the various roles undertaken in everyday life such as
parent, child, expert, and client.
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The Commonality Corollary
The Commonality Corollary acknowledges that, in addition to individuality (as described
in the Individuality Corollary), people share some similarity in their personal constructs.
In explaining this, Kelly (1955) wrote, “To the extent that one person employs a
construction of experience which is similar to that employed by another, his
psychological processes are similar to the other person” (Vol 1., p.63).
The Sociality Corollary
The Sociality Corollary accounts for the fact that people are able to relate to and attempt
to understand others. That is, people make constructions about how another person may
construe situations, people, etc. In describing this, Kelly (1955) wrote, “To the extent that
one person construes the construction processes of another, he may play a role in a social
process involving the other person” (Vol., p.66). This ‘role playing’ is critical for the
functioning of intimate, ongoing relationships.
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Appendix I: DSM-IV-TR Diagnostic Criteria for Asperger's Syndrome
The following diagnostic criteria are from the DSM-IV-TR (American Psychiatric
Association, 2000).
An individual must meet criteria (I), (II), (III), (IV), (V), and (VI):
(I) Qualitative impairment in social interaction, as manifested by at least two of the
following:
(a) Marked impairments in the use of multiple nonverbal behaviours such as
eye-to-eye gaze, facial expression, body posture, and gestures to regulate social
interaction.
(b) Failure to develop peer relationships appropriate to developmental level.
(c) A lack of spontaneous seeking to share enjoyment, interest or achievements
with other people, (e.g., by a lack of showing, bringing, or pointing out objects
of interest to other people).
(d) Lack of social or emotional reciprocity.
(II) Restricted repetitive and stereotyped patterns of behaviour, interests and
activities, as manifested by at least one of the following:
(a) Encompassing preoccupation with one or more stereotyped and restricted
patterns of interest that is abnormal either in intensity or focus.
(b) Apparent inflexible adherence to specific, non-functional routines or rituals.
(c) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping
or twisting, or complex whole-body movements).
(d) persistent preoccupation with parts of objects.
(III) The disturbance causes clinically significant impairments in social,
occupational, or other important areas of functioning.
(IV) There is no clinically significant general delay in language (e.g., single words
used by age 2 years, communicative phrases used by age 3 years)
(V) There is no clinically significant delay in cognitive development or in the
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development of age-appropriate self-help skills, adaptive behaviour (other than in
social interaction) and curiosity about the environment in childhood.
(VI) Criteria are not met for another specific Pervasive Developmental Disorder or
Schizophrenia.
324
Appendix J: DSM-IV-TR Diagnostic Criteria for Autistic Disorder
The following diagnostic criteria is from the DSM-IV-TR (American Psychiatric
Association, 2000).
(I) A total of six (or more) items from (a), (b), and (c), with at least two from (a), and one
each from (b) and (c)
(a) Qualitative impairment in social interaction, as manifested by at least two of the
following:
1. Marked impairments in the use of multiple nonverbal behaviours such as eye-
to-eye gaze, facial expression, body posture, and gestures to regulate social
interaction.
2. Failure to develop peer relationships appropriate to developmental level
3. A lack of spontaneous seeking to share enjoyment, interests, or achievements
with other people, (e.g., by a lack of showing, bringing, or pointing out objects
of interest to other people).
4. Lack of social or emotional reciprocity (e.g., not actively participating in
simple social play or games, preferring solitary activities, or involving others in
activities only as tools or ‘mechanical’ aids)
(b) Qualitative impairments in communication as manifested by at least one of the
following:
1. Delay in, or total lack of, the development of spoken language (not
accompanied by an attempt to compensate through alternative modes of
communication such as gesture or mime).
2. In individuals with adequate speech, marked impairment in the ability to
initiate or sustain a conversation with others
3. Stereotyped and repetitive use of language or idiosyncratic language.
4. Lack of varied, spontaneous make-believe play or social imitative play
appropriate to developmental level.
(c) Restricted repetitive and stereotyped patterns of behaviour, interests and
activities, as manifested by at least two of the following:
325
1. Encompassing preoccupation with one or more stereotyped and restricted
patterns of interest that is abnormal either in intensity or focus.
2. Apparently inflexible adherence to specific, non-functional routines or rituals.
3. Stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or
twisting, or complex whole-body movements).
4. Persistent preoccupation with parts of objects.
(II) Delays or abnormal functioning in at least one of the following areas, with onset prior
to age 3 years:
(a) Social interaction.
(b) Language as used in social communication.
(c) Symbolic or imaginative play.
(III) The disturbance is not better accounted for by Rett's Disorder or Childhood
Disintegrative Disorder.
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Appendix K: DSM-IV-TR Diagnostic Criteria for Pervasive Developmental
Disorder Not Otherwise Specified
The following diagnostic criteria is from the DSM-IV-TR (American Psychiatric
Association, 2000).
This category should be used when there is a severe and pervasive impairment in the
development of reciprocal social interaction or verbal and nonverbal communication
skills, or when stereotyped behaviour, interests, and activities are present, but the
criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia,
Schizotypal Personality Disorder, or Avoidant Personality Disorder. For example,
this category includes atypical autism presentations that do not meet the criteria for
Autistic Disorder because of late age of onset, atypical symptomatology, or
sub-threshold symptomatology, or all of these.
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Appendix L: UOW Human Research Ethics approval
328
Appendix M: Participant Information Sheet
Understanding the Experience of Asperger’s Syndrome during Adolescence:
A Personal Construct Psychology and Family Systems Approach
Researchers: A/Prof Peter Caputi, Miss Elizabeth Cridland, Prof. Sandra Jones, and Dr
Christopher Magee.
What is the purpose of the research?
This student research project aims to better understand the experience of Asperger’s
Syndrome from the perspective of adolescents with Asperger’s Syndrome and their
family. Participating families will be involved in a series of interviews which will cover
both positive and negative experiences of living with Asperger’s Syndrome. It is hoped
that research findings will help improve support services for adolescent individuals with
Asperger’s Syndrome and their families.
What will I be doing if I take part in this research?
First, the researcher will have a conversation with interested families to explain the study in
detail, to answer any questions, and to determine eligibility for the study. If you have further
questions, an additional session can be arranged.
Eligible families who want to participate in the study will then be involved in a discussion
with the researcher about your positive and negative experiences of living with Asperger’s
Syndrome during the adolescent period. You will discuss your experiences with the
researcher based on general interview questions.
Your parents will also complete a questionnaire which involves three short
questionnaires about their feelings, about being a parent, and about general life events.
This research will take place in private settings, such as your home, Northfields Clinic at
the University of Wollongong, or the Centre for Health Initiatives at the University of
Wollongong. You can chose where you would like to complete your interviews.
How long will it take?
The total time commitment for Phase 1 is estimated to be 1individual session lasting
around 60 minutes.
Can anyone hear what I said, or see what I answered?
Personal information (e.g. names) will not be disclosed in the reporting of the study.
Only anonymous, group-based data from this study will be reported, and used to inform
academic journal articles.
All interviews will be videotaped so the researchers can transcribe and analyse them. Only
the researchers involved in the study will have access to these recorders and transcriptions.
Participants within the same family will not be given access to other family member’s
information (eg; questionnaire answers, or interview transcripts) unless permission is
329
provided by that family member. Participants from different families will not be given
access to other family’s information. All information gathered during the study (including
recordings) will be stored securely at the university for 5 years.
Can I change my mind?
Participation is entirely voluntary and you can choose to discontinue your involvement
before or during the study. You will not be pressured to continue with the study if you do
not wish to continue. Please note that you may have to be withdrawn from the study if
other family members choose to discontinue their participation in the study.
Will I receive any feedback about the results of the study?
Interested participants will be provided with formal reports about the study’s findings.
Are there any potential risks, inconveniences or discomforts from being involved in
the study?
Potential risks of participating in the study involve discussion of topics that may upset
you (such as negative experiences of living with AS).
Are there any benefits of being involved in the study?
Participants may benefit therapeutically from being involved in the study. That is,
discussion is expected to be helpful to participants, by increasing awareness and
understanding between family members.
Ethics Review
This study has been reviewed by the Human Research Ethics Committee (Social Science,
Humanities and Behavioural Science) of the University of Wollongong. If you have any
concerns or complaints regarding the way this research has been conducted, you can
contact the UoW Ethics Officer on (02) 4221 4457.
If I want to be involved, what do I do?
If you decide you would like to be involved in the study you will sign a form provided by
the researcher. Your parent’s will also need to sign the form to say it is ok for you to be
involved. Your parents can provide their own consent to be involved in the study because
they are adults.
If you have any further queries, please do not hesitate to contact Miss Elizabeth
Cridland ([email protected]). If you are dissatisfied with any aspect of how
this research is conducted you can conduct the Secretary of the University of
Wollongong Human Research Ethics Committee of 0242 214457. If you are feeling
distressed please call Lifeline on 131114 or Northfields Clinic, UOW on 42213747 to
arrange an appointment.
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Appendix N: Consent Form
Understanding the Experience of Asperger’s Syndrome during Adolescence:
A Personal Construct Psychology and Family Systems Approach
Researchers: A/Prof Peter Caputi, Miss Elizabeth Cridland, Prof. Sandra Jones, and Dr Christopher Magee.
I have read the participant information sheet entitled “Understanding the Experience of
Asperger’s Syndrome during Adolescence: A Personal Construct Psychology and
Family Systems Approach- Phase 1” and I am interested in participating in the study.
I understand that my participation in the study will involve:
completing a short questionnaire
discussing my positive and negative experiences of living with Asperger’s Syndrome
during the adolescent period with the researcher
a commitment of my time (approximately session lasting around 60 minutes)
being video or audio taped during the research interviews, for the purpose of analysis
only.
the results of this study being reported at conferences and academic journal articles.
I have had the opportunity to ask the researchers any questions I have about the
study.
I understand that I am free to withdraw my consent at any time during the
research.
By signing below I am providing my informed consent to participate in Phase 1 of this
research:
Name Signed Date
............................................. ............................................. ........................
If you have any further queries, please do not hesitate to contact Miss Elizabeth Cridland
([email protected]). If you are dissatisfied with any aspect of how this research is conducted
you can conduct the Secretary of the University of Wollongong Human Research Ethics Committee
of 0242 214457. If you are feeling distressed please call Lifeline on 131114 or Northfields Clinic,
UOW on 42213747 to arrange an appointment.
331
Appendix O: Interview Guide
Please note: This is the interview guide for adolescents with ASD. The interview guides used for
other family members have the same content but with wording changes as appropriate (e.g.,
questions referring to wife, son, and daughter for Fathers).
The first few questions are about you:
1) What are your hobbies?
2) What words would you use to describe your personality?
3) If you could be any type of person who would it be? Why?
The following questions are about you and your family:
4) What things about your family do you like the most?
5) What things about your family do you dislike?
The next few questions are about you and your Mum:
6i) What activities do you like to do with Mum?
6ii) How would you describe Mum?
6iii) How do you think Mum would describe herself?
6iv) How do you think your Mum would describe you?
(Repeat question 6 for each family member)
The next few questions are about Asperger’s Syndrome:
7) Can you tell me about a time in the last year when you think Mum understood
what it was like to have AS?
a. How did that make you feel?
b. How did that make Mum feel?
8) Can you tell me about a time in the last year when you think Mum didn’t
understand what it was like to have AS?
a. How did that make you feel?
b. How did that make Mum feel?
(Repeat questions 7 and 8 for each family member)
332
The next few questions are also about Asperger’s Syndrome:
9) How would I know that you had AS?
10) How would you explain AS to someone who didn’t know anything about it (like a
teacher or friend)?
11) Some people recognise that there are some good things about AS, do you think
are some good things about AS?
i. (If yes) Can you tell me about a time in the past year where you thought there
were some good things about having AS?
12) What are some difficulties of having AS?
i. Can you tell me about a time in the past year where AS made a situation
difficult for you?
ii. How did you react to this situation?
iii. What strategies did you use to cope in this situation?
iv. What would have been unhelpful in this situation?
v. Who, in your family, do you find helpful in difficult situations?
vi. What do they do to help you?
vii. Why do you prefer to go to (above person) for help rather than (another family
member)?
13) Do you think being a teenager with AS makes you different from other
teenagers? If yes, in what ways?
14) Is the way you feel about your AS now, different to when you were in primary
school?
The last few questions are about household jobs:
15) What jobs do you do at home?
16) What jobs do other family members do around the home?
17) Do you think these jobs are fair?
18) Is there anything else that you would like to tell me about your experience of
living with AS?
333
Appendix P: Study Advertisement
Are you, or do you know, a teenager with Asperger’s Syndrome or High Functioning Autism?
If so, we would love to talk to you!
Researchers at the University of Wollongong are looking for adolescents with Asperger’s
Syndrome or High Functioning Autism, and their families, to participate in a study
aiming to understand the experiences of living on the Autism Spectrum during
adolescence.
Participating in the study will involve:
Discussing your positive and negative experiences during adolescence
Completing a sorting task with the researcher
Providing feedback about being involved in the study
This research will be conducted over the next 18 months. Participants will be involved
periodically over this time, by completing around 6 interview sessions, lasting
approximately 45-60 minutes each.
It is anticipated that research findings will have the potential to inform clinical approaches for working with adolescent individuals with Asperger’s Syndrome and High Functioning Autism and their families.
Who can be involved?
To be eligible for the study families must have a family member with Asperger’s
Syndrome or High Functioning Autism who is:
In school years 7-10
Has an older sibling without a formal diagnosis on the Autism Spectrum who lives at home
What should I do if I want more information about this study?
If you would like more information, please contact Elizabeth Cridland via email
([email protected]) or phone (42213693).
If you are dissatisfied with any aspect of how this research is conducted you can conduct the
Secretary of the University of Wollongong Human Research Ethics Committee on 0242 214457.
334
Appendix Q: Participant Information Sheet (Dependency Grid)
Understanding the Experience of Asperger’s Syndrome during Adolescence:
A Personal Construct Psychology and Family Systems Approach- Phase 2
Researchers: A/Prof Peter Caputi, Miss Elizabeth Cridland, Prof. Sandra Jones, and Dr Christopher
Magee.
What is the purpose of the research?
This student research project aims to better understand the experience of Asperger’s
Syndrome from the perspective of adolescents with Asperger’s Syndrome and their family. It
is hoped that research findings will help improve support services for adolescent individuals
with Asperger’s Syndrome and their families.
What will I be doing if I take part in this research?
In phase 2, you and your family will complete some sorting activities with the researcher.
These sorting activities will focus on the ways in which your family helps each other in
challenging situations.
The researcher will give you feedback about the sorting activities and will also ask you for
general feedback about being involved the study, particularly what it was like to be involved
in the sorting activities.
This research will take place in private settings, such as your home, Northfields Clinic at the
University of Wollongong, or the Centre for Health Initiatives at the University of
Wollongong. You can chose where you would like to complete your interviews.
How long will it take?
The time commitment for Phase 2 involves 1 individual session (lasting approximately 60
minutes) and a family feedback session (lasting approximately 60 minutes).
Can anyone hear what I said, or see what I answered?
Personal information (e.g. names) will not be disclosed in the reporting of the study. Only
anonymous, group-based data from this study will be reported, and used to inform academic
journal articles.
All interviews will be videotaped so the researchers can transcribe and analyse them. Only
the researchers involved in the study will have access to these recorders and transcriptions.
Participants within the same family will not be given access to other family member’s
information (eg; questionnaire answers, interview transcripts, or sorting tasks) unless
permission is provided by that family member. Participants from different families will not be
given access to other family’s information. All information gathered during the study
(including recordings) will be stored securely at the university for 5 years.
335
Can I change my mind?
Participation is entirely voluntary and you can choose to discontinue your involvement before
or during the study. You will not be pressured to continue with the study if you do not wish to
continue. Please note that you may have to be withdrawn from the study if other family
members choose to discontinue their participation in the study.
Will I receive any feedback about the results of the study?
During phase 3, participants will receive feedback about your sorting activities. Interested
participants will be provided with formal reports about the study’s findings.
Are there any potential risks, inconveniences or discomforts from being involved in the
study?
Potential risks of participating in the study involve discussion of topics that may upset you
(such as negative experiences of living with AS) during phase 1. However, phases 2 and 3 of
the research are anticipated to provide opportunities to address such issues through greater
understanding of other family member’s perspectives.
Are there any benefits of being involved in the study?
Participants may benefit therapeutically from being involved in the study. That is, discussion
of experiences of living with AS in the family (and involvement in phases 2 and 3 of the
project) is expected to be helpful to participants, by increasing awareness and understanding
between family members.
Ethics Review
This study has been reviewed by the Human Research Ethics Committee (Social Science,
Humanities and Behavioural Science) of the University of Wollongong. If you have any
concerns or complaints regarding the way this research has been conducted, you can contact
the UoW Ethics Officer on (02) 4221 4457.
If I want to be involved, what do I do?
If you decide you would like to be involved in the study you will sign a form provided by the
researcher. Your parent’s will also need to sign the form to say it is ok for you to be involved.
Your parents can provide their own consent to be involved in the study because they are
adults.
If you have any further queries, please do not hesitate to contact Miss Elizabeth Cridland
([email protected]). If you are dissatisfied with any aspect of how this research is
conducted you can conduct the Secretary of the University of Wollongong Human Research
Ethics Committee of 0242 214457. If you are feeling distressed please call Lifeline on 131114 or
Northfields Clinic, UOW on 42213747 to arrange an appointment.
336
Appendix R: Consent Form (Dependency Grid)
Understanding the Experience of Asperger’s Syndrome during Adolescence:
A Personal Construct Psychology and Family Systems Approach- Phase 2
Researchers: A/Prof Peter Caputi, Miss Elizabeth Cridland, Prof. Sandra Jones, and Dr Christopher Magee.
I have read the participant information sheet entitled “Understanding the Experience of
Asperger’s Syndrome during Adolescence: A Personal Construct Psychology and
Family Systems Approach: Phase 2” and I am interested in participating in the study.
I understand that my participation in Phase 2 of the study will involve:
completing a short questionnaire
completing two sorting tasks with the researcher
receiving feedback about the sorting tasks from the researcher
providing feedback to the researcher about my experience of being involved the study
a commitment of my time (approximately 2 sessions lasting 45-60 minutes each)
being video or audio taped during the research interviews, for the purpose of analysis
only.
the results of this study being reported at conferences and academic journal articles.
I have had the opportunity to ask the researchers any questions I have about the
study.
I understand that I am free to withdraw my consent at any time during the research.
By signing below I am providing my informed consent to participate in phase 2 of this
research:
Name Signed Date
............................................. ............................................. ........................
If you have any further queries, please do not hesitate to contact Miss Elizabeth
Cridland ([email protected]). If you are dissatisfied with any aspect of how
this research is conducted you can conduct the Secretary of the University of
Wollongong Human Research Ethics Committee of 0242 214457. If you are feeling
distressed please call Lifeline on 131114 or Northfields Clinic, UOW on 42213747 to
arrange an appointment.
337
Appendix S: Supplied Situations and Resources
Feeling sad
Feeling overwhelmed
Feeling frustrated
Feeling bored
Feeling anxious
Feeling lonely
Problems with Mum
Situations Problems with Dad
Problems with sibling
Have questions about ASD a
Have questions about puberty
Having difficulty with homework
Having difficulty making friends
Having difficulty with friends
Having difficulty understanding a social situation
Being bullied
Mum
Dad
Resources grid 1: People Sibling
Other family member
Myself
Someone outside the family
Someone who can give me a hug
Someone who listens to me
Someone who can sort out the problem
Someone who can help me sort out the problem
Resources grid 2: Types of support Someone who can explain it to me
Someone who will give me advice
Someone who can play/hang out with me
Someone who can organise an activity for me
I want to be left alone
Note: a Autism Spectrum Disorder
338
Appendix T: Dependency Grid Templates
Feeling angry
Feeling sad
Feeling overwhelmed
Feeling frustrated
Feeling bored
Feeling anxious
Feeling lonely
Problems with Mum
Problems with Dad
Problems with sibling/s
Have questions about ASD
Have questions about puberty
Difficulty with homework
Difficulty making friends
Difficulty with friends
Difficulty understanding a social
situation
Are being bullied
M u m
D a d
S ib
li n g
O th
e r
fa m
il y …
… …
… …
… .
m e m
b e r
… …
… …
… …
… …
…
O th
e r…
… …
… …
… …
… …
… …
… .
S o m
e o n e o
u ts
id e f
a m
il y
M y se
lf
O th
e r…
… …
… …
… …
… …
… …
… .
339
Feeling angry
Feeling sad
Feeling overwhelmed
Feeling frustrated
Feeling bored
Feeling anxious
Feeling lonely
Problems with Mum
Problems with Dad
Problems with sibling/s
Have questions about ASD
Have questions about puberty
Difficulty with homework
Difficulty making friends
Difficulty with friends
Difficulty understanding a
social situation
Are being bullied
S o
m e o n
e w
h o
c a n
o rg
a n is
e a
n a
c ti
v it
y
I w
a n
t to
b e l
e ft
a lo
n e
S o
m e o n
e w
h o
l is
te n s
to m
e
S o
m e o n
e w
h o
c a n
so
rt o
u t
th e p
ro b
le m
fo r
m e
S o
m e o
n e w
h o
c a n
h
e lp
m
e so
rt o
u t
p ro
b le
m
b e r…
… …
… …
… …
… …
S o
m e o n
e w
h o
w il
l g
iv e m
e a
d v
ic e
S o
m e o n
e w
h o
c a n
e x p
la in
i t
to m
e
S o
m e o n
e w
h o
c a n
p la
y w
it h
m e
S o
m e o n
e w
h o
c a n
g iv
e m
e a
h u
g
O th
e r…
… …
… …
… …
… …
… …
… .
340
Appendix U: Resource-Card Sorting Mat
341
Appendix V: Thesis Revisions
Section 1: Revised wording of Chapter 4 research aims (Page 90, paragraph 1)
The aim of this study was to determine whether the issues discussed by adolescents with ASD
and their families would be consistent with the issues highlighted in the previous application of
PCT for understanding adolescents with ASD (see Table 4.2). The study also aimed to determine if
there were additional issues pertinent to the experience of being an adolescent/having an adolescent
family member with ASD raised by participants that were not highlighted in Cridland et al. (2013a).
Section 2: Elaboration of data analysis procedures in Chapter 4 (Page 94, Paragraph 1)
Data were initially coded based on the themes discussed in Cridland et al (2013a), with
additional themes generated from remaining data. No major changes to the themes identified by the
first author were identified as being necessary by either co-authors or the independent checker.
Following the analysis procedure outlined by Braun and Clarke (2006), a final consultation with the
authors followed to discuss specific theme descriptions and selection of most relevant quotes.
Credibility of data analysis was facilitated by a systematic record of how data were
collected, maintained, and prepared for analysis. Other strategies employed to enhance the integrity
of data analysis included the first author having prolonged engagement with the data (including
interview administration and transcription) (van den Hoonaard, 2002) and the three methods of
bracketing outlined in Tufford and Newman (2012). Specifically, the bracketing methods included
keeping memos during data collection and analysis as a means of examining and reflecting on their
engagement with the data, engaging in discussions with an outside source to bring awareness to
preconceptions and potential biases, and keeping a reflexive journal during all stages of the research
process to sustain a reflexive stance (Tufford & Newman, 2012).
A formal measure of inter-rater agreement was not employed. Rather the process involved
one of the co-authors and one independent checker reading all transcripts with the potential themes
identified by the first author. This method of ‘investigator triangulation’ (Guion, Diehl, &
McDonald, 2011) was employed over traditional member checking for various reasons. More
specifically, there were concerns that, despite de-identification of transcripts, individuals involved
in member checking may be able to identify other participants based on experiences discussed in
the interviews. This issue was particularly pertinent in recognizing other family members’
transcripts. However, this issue was also relevant for recognition of other participants given the
local community within which the sample was recruited. Associated with this, participant
342
anonymity was important in obtaining accurate data, whereby participants may have felt reluctant
to speak openly in interviews if there were concerns about being identified through member
checking processes.
As this was an exploratory study using a sample of convenience, data saturation of themes
was not a specific aim. The limitations of the small sample are elaborated on in further detail in the
discussion. Having said that, themes were generated from the frequency of topics discussed by
participants, meaning data saturation was satisfied for each theme. In regards to positionality, the
co-authors and independent checker had various backgrounds of involvement with adolescents with
ASD including research, clinical, and familial experiences. Such varying experiences were
important in minimising potential biases in data interpretation (Whittemore, Chase, & Mandle,
2001).
Section 3: Elaboration of data analysis procedures in Chapter 5 (Page 132, Paragraph 2)
Data analysis followed the inductive coding process outlined by Braun and Clarke (2006),
which involves familiarization with the data (the primary researcher conducted and transcribed all
interviews), generation of initial codes, collation of codes into potential themes with corresponding
quotes, review of themes with credibility checks, and final definition of themes (Braun & Clarke,
2006). Credibility of data analysis was facilitated by a systematic record of how data were
collected, maintained, and prepared for analysis. Credibility checks involved the research team
reviewing all transcripts together with the potential themes identified by the first author. No major
changes to the themes identified by the first author resulted. This consultation process is recognised
as an important process in IPA, given that the analysis of the interview material is inevitably
influenced by the researchers’ characteristics. The research team consisted of four researchers with
various backgrounds of involvement with adolescents with ASD including research, clinical, and
familial experiences.
This method of credibility checking, also referred to as ‘investigator triangulation’ (Guion,
Diehl, & McDonald, 2011), was employed over traditional member checking for various reasons.
Primarily, there were concerns that, despite de-identification of transcripts, individuals involved in
member checking may be able to identify other participants based on experiences discussed in the
interviews. This issue was particularly pertinent in recognizing other family members’ transcripts.
However, this issue was also relevant for recognition of other participants given the local
community within which the sample was recruited. Associated with this, participant anonymity was
important in obtaining accurate data, whereby participants may have felt reluctant to speak openly
in interviews if there were concerns about being identified through member checking processes.
343
Other strategies employed to enhance the integrity of data analysis included the first author
having prolonged engagement with the data (including interview administration and transcription)
(van den Hoonaard, 2002) and the three methods of bracketing outlined in Tufford and Newman
(2012). Specifically, the bracketing methods included the first author keeping memos during data
collection and analysis as a means of examining and reflecting on their engagement with the data,
the first author engaging in discussions with an outside source to bring awareness to preconceptions
and potential biases, and the first author keeping a reflexive journal during all stages of the research
process to sustain a reflexive stance (Tufford & Newman, 2012).
Section 4: Revised wording of Chapter 7 research aims (Page 201, paragraph 2)
The present study investigates the experiences of adolescent girls with a younger, adolescent
brother with ASD. Specifically, the study aims to explore the roles and responsibilities undertaken
by the sisters at school and in the home contexts, and further how these roles interact. The study
investigates these issues from the perspectives of the adolescent sisters and their family members.
In doing so, the study aims to gain a multifaceted and holistic understanding of family functioning.
Section 5: Elaboration of data analysis procedures in Chapter 7 (Page 208, Paragraph 3)
The data were analysed following the inductive coding process outlined by Braun and Clarke
(2006). This process included familiarization with the data (the primary researcher conducted and
transcribed all interviews), generation of initial codes, collation of codes into potential themes with
corresponding quotes, review of themes with credibility checks, and final coding of themes (Braun
& Clarke, 2006). Credibility of data analysis was facilitated by a systematic record of how data
were collected, maintained, and prepared for analysis.
A formal measure of inter-rater agreement was not employed. Rather the process involved
one member of the research team and one independent checker reading all transcripts with the
potential themes identified by the first author. This method of credibility checking, also referred to
as ‘investigator triangulation’ (Guion, Diehl, & McDonald, 2011), was employed over traditional
member checking for various reasons. Primarily, there were concerns that, despite de-identification
of transcripts, individuals involved in member checking may be able to identify other participants
based on experiences discussed in the interviews. This issue was particularly pertinent in
recognizing other family members’ transcripts. However, this issue was also relevant for
recognition of other participants given the local community within which the sample was recruited.
Associated with this, participant anonymity was important in obtaining accurate data, whereby
344
participants may have felt reluctant to speak openly in interviews if there were concerns about
being identified through member checking processes.
No major changes to the themes identified by the primary researcher were identified as being
necessary by either member check. Following the procedure outlined by Braun and Clarke (2006), a
final consultation with the research team followed to discuss specific theme descriptions and
selection of most relevant quotes
Other strategies employed to enhance the integrity of data analysis included having
prolonged engagement with the data (including interview administration and transcription) (van den
Hoonaard, 2002) and the three methods of bracketing outlined in Tufford and Newman (2012).
Specifically, the bracketing methods included keeping memos during data collection and analysis
as a means of examining and reflecting on their engagement with the data, engaging in discussions
with an outside source to bring awareness to preconceptions and potential biases, and keeping a
reflexive journal during all stages of the research process to sustain a reflexive stance (Tufford &
Newman, 2012).
Further, in regards to positionality, the co-authors and independent checker had various
backgrounds of involvement with adolescents with ASD including research, clinical, and familial
experiences. Such varying experiences were important in minimising potential biases in data
interpretation (Whittemore, Chase, & Mandle, 2001). As this was an exploratory study, it was not
the aim the achieve data saturation of all themes. In order to covey the strength of themes, the
number of participants who discussed each point is presented.
345
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- University of Wollongong
- Research Online
- 2014
- The lived experiences of adolescents with autism spectrum disorder: a personal constructivist and family systems approach
- Elizabeth Kate Cridland
- Recommended Citation
- Name of Department (Times New Roman 12pt/Bold)
