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Transition to Higher Education for Students With Autism: A Systematic Literature Review
Alison Nuske, Fiona Rillotta, and Michelle Bellon Flinders University
Amanda Richdale La Trobe University
This study is a systematic literature review of the experiences of individuals with autism spectrum disorder (ASD) and their family members in higher education, with a particular focus on transition. Systematic searches were conducted across six databases: Medline, CINAHL, ProQuest, PsycINFO, Scopus, and Informit. Published articles (n � 11) describing the experiences of transition to higher education, from the perspectives of individuals with ASD and their family members, were reviewed. The bioecological theory model was used as a framework for examining the complex interactions between elements at the individual, microsystem, mesosystem, exosystem, macrosystem, and chronosystem levels, and how they impact on the student’s experience of transition to higher education. Findings showed that individuals with ASD experience challenges associated with: core and associated charac- teristics of ASD, self-disclosure and awareness, and mental health and wellbeing. Family members reported significant challenges associated with systemic policies, which impacted on their ability to support their family member with ASD. It is highlighted that an individual and flexible approach to transition support, and increased academic and professional staff awareness and understanding of ASD, are critical to the transition experience of students with ASD in higher education.
Keywords: autism spectrum disorder, higher education, postsecondary education, transition, university
Autism spectrum disorder (ASD) is characterized by difficulties with social communication skills, and a pattern of restricted or repetitive behavior, interests, or activities (American Psychiatric Association, 2013). Most recent prevalence rates suggest approx- imately 1 in 68 children have ASD and an increase in this prev- alence rate has been reported in the United States over the past 20 to 30 years (Christensen et al., 2016). The prevalence of ASD in adults has been reported in two English studies as approximately 1 in 100 (Brugha et al., 2011; Brugha et al., 2016). ASD is the current diagnostic category outlined in the Diagnostic and Statis- tical Manual of Mental Disorders-Fifth Edition (DSM–5; Ameri- can Psychiatric Association, 2013); however, other terminology such as autism, Asperger’s syndrome, high functioning autism, autism spectrum condition, and pervasive developmental disorder not otherwise specified (PDDNOS) have also been used to de- scribe individuals with characteristics along this spectrum. For the purposes of this review, the term ASD will be used throughout.
Inclusion of students in higher education from diverse back- grounds, including those with disabilities, has been increasing (Brett, 2016; Katsiyannis, Zhang, Landmark, & Reber, 2009; Swart & Greyling, 2011). Changes to education and disability legislation internationally, have resulted in a significant shift to- ward promoting increased opportunities for individuals with a disability, including ASD, to engage in higher education (Brett, 2016; Ebersold, 2008; Katsiyannis et al., 2009). The introduction of legislation such as the Disability Discrimination Act 1992 (Cth) in Australia, the Americans with Disabilities Act (1990) in the United States, and the Disability Discrimination Act (1995) in the United Kingdom has been a driving force behind changes to higher education policy and increased focus on inclusive practice over the past three decades (Brett, 2016; Järkestig Berggren, Rowan, Berg- bäck, & Blomberg, 2016; Katsiyannis et al., 2009; Pumfrey, 2008; VanBergeijk, Klin, & Volkmar, 2008). The Convention on the Rights of Persons with Disabilities (UNCRPD), adopted by the United Nations in 2006, has also played a significant role in influencing disability legislation internationally. The UNCRPD highlights the importance of improved educational opportunities for individuals with disabilities (Järkestig Berggren et al., 2016; Morley & Croft, 2011).
It has been reported that the number of individuals with ASD enrolling in higher education has been increasing (Barnhill, 2016; Bell, Devecchi, Mc Guckin, & Shevlin, 2017). This may be be- cause of the increasing inclusion of individuals with disabilities within higher education (Brett, 2016; Ebersold, 2008; Katsiyannis et al., 2009), as well as the increase in prevalence of ASD over the past 20 to 30 years (Cox et al., 2017; Gelbar, Smith, & Reichow, 2014). It is also predicted that the number of individuals with ASD
This article was published Online First February 25, 2019. Alison Nuske, Fiona Rillotta, and Michelle Bellon, Disability and Com-
munity Inclusion, College of Nursing and Health Sciences, Flinders Uni- versity; Amanda Richdale, Olga Tennison Autism Research Centre, School of Psychology & Public Health, La Trobe University.
Alison Nuske completed this work during her doctoral studies under the supervision of the other three authors.
Correspondence concerning this article should be addressed to Alison Nuske, Disability and Community Inclusion, College of Nursing and Health Sciences, Flinders University, GPO Box 2100, Adelaide, SA 5001, Australia. E-mail: [email protected]
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Journal of Diversity in Higher Education © 2019 National Association of Diversity Officers in Higher Education 2019, Vol. 12, No. 3, 280 –295 1938-8926/19/$12.00 http://dx.doi.org/10.1037/dhe0000108
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seeking to enroll in higher education is likely to continue to rise (Kuder & Accardo, 2018; Pinder-Amaker, 2014; Thierfeld Brown & Wolf, 2014). Thus, it is necessary to further examine and synthesize the literature available across existing studies to better understand the experiences of students with ASD and their family members during the transition to higher education. Further re- search is also needed to explore the experiences of these students to develop appropriate and effective support strategies during their transition to higher education.
Difficulties with social communication skills; a preference for structure and difficulty managing changes to routines; difficulties with executive functioning skills, such as planning and problem solving; and sensory sensitivities, associated with ASD often cre- ate significant challenges in primary and secondary educational settings (Fleury et al., 2014). These same difficulties can also create unique challenges in the higher education setting, where routine and structure is often lacking, educational spaces are often much larger and overwhelming, and access to support requires an increased level of self-awareness, and a reliance on a student’s ability and willingness to self-disclose (Adreon & Durocher, 2007; Knott & Taylor, 2014) and to seek support.
There is a wide range of literature on the barriers to, and facilitators for individuals with ASD while undertaking studies in higher education (Barnhill, 2016; Brown & Coomes, 2016; Knott & Taylor, 2014; Kuder & Accardo, 2018; VanBergeijk et al., 2008); however, there is a paucity of research that has focused specifically on the transition period. In addition, there are limited studies that explore the experiences of individuals with ASD in higher education directly (Alverson, Lindstrom, & Hirano, 2015; C. Anderson & Butt, 2017; Baric, Hemmingsson, Hellberg, & Kjellberg, 2017; Bell et al., 2017; Cai & Richdale, 2016; Madriaga & Goodley, 2010; Mitchell & Beresford, 2014; Van Hees, Moy- son, & Roeyers, 2015).
Literature investigating the experiences of students with disabil- ities in higher education has highlighted a range of difficulties and barriers. For students with ASD, many of these difficulties relate to the need for self-disclosure, self-awareness and a desire to “fit in,” often resulting in a delay in seeking or accessing disability support services (Adreon & Durocher, 2007; Bell et al., 2017; Cox et al., 2017). As Hewitt (2011) highlights, this may in fact be the first time that the student has been required to advocate for themselves to access supports or accommodations. Disclosure to disability services is the first step in successfully accessing services and supports (Rocco, 2001); however, research has shown that some students may be reluctant to disclose their disability (Adreon & Durocher, 2007; A. H. Anderson, Carter, & Stephenson, 2018; Shattuck et al., 2014), and this may result in delayed access to services. For this reason, a broad definition of “transition” has been considered for this review, to encompass the transition into and the first year of studies in higher education.
Family members, in particular parents, play a significant role in supporting and advocating for an individual with ASD, especially during their primary and secondary educational years (Volkmar, Reichow, & McPartland, 2014). Previous studies exploring needs and facilitators for individuals with ASD attending higher educa- tion have also highlighted the importance of family support in the pursuit of higher education (Zeedyk, Tipton, & Blacher, 2016). However, research exploring the experiences of parents or other family members during the transition to higher education for
students with ASD is lacking (C. Anderson & Butt, 2017; Bell et al., 2017; Cai & Richdale, 2016; Dymond, Meadan, & Pickens, 2017; Simmeborn Fleischer, 2012; Peña & Kocur, 2013). There- fore, studies that have examined the perspectives of family mem- bers during this transition have also been included within this review.
The experiences of students with disabilities in higher education have been an expanding area of focus in educational research in recent years (Lang, 2015). There has also been an increase in the number of studies focused on the experiences of students with ASD enrolled in higher education. A number of systematic reviews into these experiences have been conducted over the past 5 years (A. H. Anderson, Stephenson, & Carter, 2017; Gelbar et al., 2014; Toor, Hanley, & Hebron, 2016; Zeedyk et al., 2016), with varying focus and purpose. In particular the study conducted by Toor et al. (2016), examined the literature on the experiences of students with ASD, their family members and staff in the higher education setting. This review identified the facilitators, obstacles, and needs of individuals with ASD in accessing higher education. While not specifically focused on transition itself, it highlights the transition period as a significant aspect of students’ successful participation in higher education. The latest article reviewed by Toor and colleagues, was published in 2015. Since this time, a number of additional studies have been conducted exploring these experi- ences for students with ASD and their family members. In addi- tion, the study conducted by Toor et al. (2016) excluded studies with a quantitative or mixed methods design. While the purpose of only including studies with a qualitative design was to ensure that all included studies had directly explored the experiences of indi- viduals with ASD in this transition process, exclusion of mixed methods studies may have resulted in relevant qualitative data being excluded from their evaluation. To gather a wide range of literature on the subject, the current review has, therefore, included articles with a qualitative or mixed methods approach to ensure qualitative discussion of experiences are not overlooked.
Another review, conducted by Sims (2016), was geographically limited, only including research conducted within the United King- dom. While differences in educational practice between the United Kingdom and other countries was cited as the reason for this limited geographical scope, one can argue that, given the paucity of literature on the subject, a systematic review of studies con- ducted with an international perspective is warranted. Regardless of systemic differences between various countries’ higher educa- tion systems, the needs and experiences of individuals with ASD and their families are likely to be similar across international boundaries. This in turn can assist in the development of recom- mendations for best practice globally and identification of areas for future research.
As a result of the increase in the number of students with ASD likely to be enrolling in higher education, and the growing research being undertaken in this area, it is critical for higher education institutions (HEIs) to develop an in depth understanding of the experiences of these students to implement best practice transition support strategies. Systematic review methodology is designed to do just this; provide an analysis and synthesis of current available knowledge within a specific area. Bearman et al. (2012) highlight the benefits of systematic review methodology, in particular as it relates to the higher education sector and acknowledges the limited uptake of this methodology within this setting. While Bearman et
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281AUTISM TRANSITION TO HIGHER EDUCATION
al. (2012) recognize the challenges in undertaking this methodol- ogy, they also identify the importance of the systematic review in potentially increasing the quality of future research conducted in the field.
Aim
The first aim of this review is to provide an update of current research, with a focus on the transition experiences of students with ASD, and the experiences of their family members during this time.
An additional aim was to further understand the experiences of individuals with ASD and their family members in their transition to higher education, to inform best practice strategies for support- ing students with ASD in their first year in higher education. The review question is: What are the experiences of individuals with autism spectrum disorder and/or their family members regarding transition to higher education?
From the available literature on transition to higher education for students with ASD, there does not appear to be a standard practice or approach to transition or orientation to university for students with ASD. In policy development and implementation, it is important to consider the views of those effected by these decisions; therefore, the goal of this systematic literature review is to provide an analysis and synthesis of available studies that have investigated the experiences of students with ASD and/or their family members. This will provide an important insight into these experiences, which in turn can help to inform future policy and intervention decisions in relation to this complex transition pro- cess. To better understand the complex systems and interactions involved in this transition process, a bioecological systems theory (Bronfenbrenner, 1979) framework has been adopted to explore and describe the outcomes of the studies reviewed.
Method
A systematic review was conducted following the PRISMA guidelines (Moher, Liberati, Tetzlaff, & Altman, 2009). System- atic searches were conducted across six databases during August of 2017: Medline, CINAHL, ProQuest limited to articles only, PsycINFO, Scopus, and Informit.
Searches were conducted using a combination of free text and subject headings terms (such as MeSH terms) and were combined using Boolean operators. Examples of subject heading terms are provided in Table 1 and Table 2. The free text search terms used
included synonyms for each keyword such as: Autism spectrum disorder OR Asperger; higher education OR further education OR tertiary education OR postsecondary education OR university OR college; transition.
The primary focus of this review was on studies that included a qualitative component to their investigation of the experiences of individuals with ASD or their family members in their transition to higher education. For this reason, mixed-methods studies were included to ensure that relevant articles or experiences were not overlooked. Articles were excluded if they contained less than 10% qualitative data on the experiences of individuals or their family members in the transition to higher education. Articles were also excluded if less than 10% of the participants had ASD or were the family member of an individual with ASD. Articles in which less than 10% of the data described transition experiences (i.e., commencing in higher education, first year of higher education) were also excluded.
References returned through the search strategy outlined above were downloaded into the systematic review software Covidence. Using this software, articles were screened by title and abstract, by two independent reviewers (AN and MB) Where there was uncer- tainty about whether a specific article met the eligibility criteria, the full article was included for detailed review against the inclu- sion criteria. Conflicts were resolved through discussion between the two reviewers and an agreement was made as to the inclusion of these articles.
The same reviewers conducted an autonomous review of the full text versions of potentially relevant studies using the eligibility criteria outlined above. Reviewers recorded reasons for exclusion using the Covidence software. Any disagreements in determining eligibility of an article was resolved by discussion between the two reviewers. Reference lists of all articles selected were also hand searched to identify additional articles for inclusion. Hand searches were conducted in two key journals in ASD and in disability and diversity in higher education: Focus on Autism and Developmental Disabilities; Journal of Autism and Developmental Disorders; Journal of Diversity in Higher Education; and Journal of Further and Higher Education.
Bioecological Theory and Transition to Higher Education
Previous literature reviews conducted within this area have not used a theoretical framework in analyzing study findings; how- ever, given the complex elements involved in the transition to
Table 1 Medline Search Terms
1. Exp Autistic Disorder/ 2. Exp Autism Spectrum Disorder/ or exp Asperger Syndrome/ 3. (autis� or asperger� or ASD or ASC).tw. 4. 1 or 2 or 3 5. Exp Universities/ 6. Exp Vocational Education/ 7. (universit� or college� or higher education or further education or postsecondary education or postsecondary education or postsecondary education
or tertiary education or TAFE or vocational education).tw. 8. 5 or 6 or 7 9. (transition� or prepar�).tw.
10. 4 and 8 and 9
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282 NUSKE, RILLOTTA, BELLON, AND RICHDALE
higher education for individuals with ASD, the bioecological the- ory model provides a useful framework for exploring these expe- riences in more depth. Therefore, studies examined in the current systematic review will be discussed using the bioecological theory model as a framework to consider the impact of the complex and interrelated systems within which the student engages.
Bioecological theory was originally developed by Urie Bron- fenbrenner to explore the ecology of human development (Bergen, 2008). Bronfenbrenner arranges the ecological environment within which an individual exists into four systems. At the center of these systems is the individual themselves, surrounded by the people and settings within which they directly interact (microsystem), while the mesosystem describes the complex interactions between two or more of these people or settings (Bergen, 2008; Bronfenbrenner, 1979). The exosystem refers to the settings not directly related to the individual, but within which events may occur that affect the individual’s development (Bergen, 2008; Bronfenbrenner, 1979). More broadly, at the macrosystem level, cultural or societal factors may also impact on the individual’s development (Bergen, 2008; Bronfenbrenner, 1979). Bronfenbrenner later added a fifth system, the chronosystem, that includes historical contexts and events that may impact on the individual’s situation (Bergen, 2008). In revis- ing the bioecological theory, Bronfenbrenner sought to emphasize the interactive and dynamic nature of human development and place a greater emphasis on the individual component (Bergen, 2008).
Ecological transitions occur throughout the life span, whenever the person’s position is altered because of a change of “role, setting, or both” (Bronfenbrenner, 1979, p. 26). The transition to higher education involves not only a significant change in setting, but also a significant shift in role, with increased expectations. Within higher education settings, the individual with ASD is now required to self-advocate, request support, and in many cases, live independently or away from home for the first time (Zeedyk et al., 2016).
As Pinder-Amaker (2014) highlights, a complex interaction occurs in the student’s educational environment, between the in- dividual, family members, educational staff, and other profession- als (mesosystem); relevant policies and legislation (exosystem); and cultural and societal beliefs about the inclusion of individuals with ASD (macrosystem), which may impact directly on outcomes for the individual when they commence higher education. In addition, these factors may be influenced by significant changes in history during the individual’s life span (chronosystem), for ex-
ample, the adoption of the UN Conventions on the Rights of Persons with Disabilities (United Nations, 2006).
Adapted from Pinder-Amaker’s (2014) example of the bioeco- logical theory model of development applied to individuals with ASD in education, Figure 1 illustrates specific elements of each of these systems as they apply to individuals with ASD, in the higher education setting.
Findings
Database searching resulted in the identification of 587 studies after duplicate removal and screening (see Figure 2). An additional 10 studies were identified through hand searching reference lists and journal indexes. After title and abstract screening, 526 articles were excluded as they did not meet inclusion criteria. A further 60 articles were excluded during full-text article review for the fol- lowing reasons: not primary research study (32); not focused on transition (10); not focused on higher education (5); no or less than 10% qualitative component (4); no or less than 10% inclusion of individual or family perspectives (4); wrong population (i.e., less than 10% of participants were individuals with ASD or family members) (3); focus on pretransition expectations (1). After inde- pendent review and consensus by AN and MB, 11 articles were agreed upon for inclusion within this review.
Quality of Study Methodology
Using the McMasters Critical Review form: Qualitative Studies (Letts et al., 2007), articles that met the inclusion criteria were assessed for methodological quality by two reviewers (AN and MB). The studies reviewed ranged in quality score from 11 to 19 points (maximum possible score 21), on the McMasters critical appraisal tool (see Table 3). Of these 11 studies, the highest score (19), was achieved by two studies (Baric et al., 2017; Dymond et al., 2017), with one study scoring only 11 points (Peña & Kocur, 2013).
Two studies had evidence of a clearly described decision trail supporting auditability of the studies (Baric et al., 2017; Dymond et al., 2017). Only three studies clearly identified a theoretical perspective within which their studies were framed (Alverson et al., 2015; Baric et al., 2017; Madriaga & Goodley, 2010) and only three studies clearly identified the assumptions and biases of the researcher (Baric et al., 2017; Dymond et al., 2017; Madriaga & Goodley, 2010). The two studies with the lowest quality scores
Table 2 PsycINFO Search Terms
1. Exp Autism Spectrum Disorders/ 2. (autis� or asperger� or ASD or ASC).tw. 3. 1 or 2 4. Exp COMMUNITY COLLEGES/ or exp COLLEGES/ 5. exp Higher Education/ 6. (universit� or college� or higher education or further education or post-secondary education or postsecondary education or postsecondary education
or tertiary education or TAFE or vocational education).tw. 7. 4 or 5 or 6 8. Exp SCHOOL TRANSITION/ or exp TRANSITION PLANNING/ 9. (transition� or prepar�).tw.
10. 8 or 9 11. 3 and 7 and 10
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283AUTISM TRANSITION TO HIGHER EDUCATION
(Madriaga & Goodley, 2010; Peña & Kocur, 2013) did not address rigor in data collection strategies and demonstrated limited evi- dence of trustworthiness.
Study Characteristics
Articles within this review were all published between 2010 and 2017. Four studies were conducted in the United States, 2 in the United Kingdom, 2 in Sweden, 1 in Belgium, 1 in the Republic of Ireland, and 1 in Australia. An overview of the studies is presented in Table 4.
Study designs included grounded theory (C. Anderson & Butt, 2017; Madriaga & Goodley, 2010; Van Hees et al., 2015), phenomenology (Alverson et al., 2015; Baric et al., 2017), naturalistic inquiry (Peña & Kocur, 2013), and case study (Simmeborn Fleischer, 2012). Data were collected using inter- views in 10 of the studies and by focus groups in one study. Four studies did not specifically state a study design (Bell et al., 2017; Cai & Richdale, 2016; Dymond et al., 2017; Mitchell & Beresford, 2014).
Participant characteristics are outlined in Table 5. There were a total of 180 participants across the 11 studies, of these a total of
158 participants were individuals with ASD or family members of individuals with ASD. Other participants included staff; individu- als with a diagnosis other than ASD; or individuals who were not attending a HEI. These participants have not been discussed in this review. A total of 92 individuals with ASD (M � 71, F � 21) participated in the studies reviewed. Parents made up a total of 64 participants, across 10 of the studies, with one study (Alverson et al., 2015) including an unclear number of family members as participants. Only two studies included a sibling of an individual with ASD as a participant.
Key findings from each of the studies were categorized accord- ing to the bioecological theory model discussed earlier and are presented in Table 6. Results indicate the experiences of transition to higher education by individuals with ASD and their family members are complex and varied and are now examined within the framework of the bioecological theory model.
Individual. Challenges related to the characteristics of ASD. Six studies
described issues related directly to the core characteristics of ASD. Challenges reported during the transition to higher education in- cluded: social communication difficulties (Bell et al., 2017; Cai &
Figure 1. Bioecological theory model of transition to higher education. Adapted from Pinder-Amaker (2014). See the online article for the color version of this figure.
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284 NUSKE, RILLOTTA, BELLON, AND RICHDALE
Richdale, 2016; Dymond et al., 2017; Mitchell & Beresford, 2014; Van Hees et al., 2015); sensory processing difficulties (Cai & Richdale, 2016; Simmeborn Fleischer, 2012; Van Hees et al., 2015); and the need for structure and routine (Cai & Richdale, 2016; Van Hees et al., 2015). Difficulties related to characteristics associated with ASD included: executive functioning difficulties (Cai & Richdale, 2016; Dymond et al., 2017; Simmeborn Fleis- cher, 2012; Van Hees et al., 2015); and difficulties with indepen- dent living skills (Dymond et al., 2017; Mitchell & Beresford, 2014; Simmeborn Fleischer, 2012).
While challenges experienced by students with ASD were sim- ilar across a number of studies, two studies also highlighted the importance of considering the difference in manifestation of these core characteristics of ASD for each individual (Alverson et al., 2015; Madriaga & Goodley, 2010). Strengths and unique skills associated with the core characteristics of ASD, such as strong
memory, dedication, focus, and an eye for detail were also high- lighted by Van Hees et al. (2015).
Self-awareness/disclosure. Self-awareness and disclosure were also identified as key requirements for transition to higher education and were highlighted across five studies (Alverson et al., 2015; Cai & Richdale, 2016; Dymond et al., 2017; Peña & Kocur, 2013; Van Hees et al., 2015). Alverson et al. (2015) found that levels of self-awareness varied significantly among participants. Issues relating to disclosure across the studies reviewed included: doubts about the benefits of disclosing (Van Hees et al., 2015), deficits in self-determination skills or initiative to seek help (Dymond et al., 2017; Peña & Kocur, 2013), or a lack of acceptance to seek support until a crisis or significant challenge had arisen (Cai & Richdale, 2016; Van Hees et al., 2015).
Mental health and emotional wellbeing. Experiences of in- creased levels of stress and anxiety were reported by participants
Figure 2. PRISMA flow diagram for articles identified through database searches.
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285AUTISM TRANSITION TO HIGHER EDUCATION
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Y N
Y N
N N
Y N
N N
N W
as th
e pr
oc es
s of
pu rp
os ef
ul se
le ct
io n
de sc
ri be
d? Y
Y Y
Y Y
Y Y
Y Y
Y Y
W as
sa m
pl in
g do
ne un
ti l
re du
nd an
cy w
as re
ac he
d? N
A N
A N
A N
A N
A Y
N A
N A
N A
N N
A W
as in
fo rm
ed co
ns en
t ob
ta in
ed ?
Y Y
Y Y
Y Y
Y Y
N A
Y Y
C le
ar &
co m
pl et
e de
sc ri
pt io
n of
pa rt
ic ip
an ts
? Y
Y Y
Y Y
Y N
Y Y
N Y
R ol
e of
re se
ar ch
er &
re la
ti on
sh ip
w it
h pa
rt ic
ip an
ts ?
N N
N N
N N
N N
N N
N Id
en ti
fi ca
ti on
of as
su m
pt io
ns an
d bi
as es
of re
se ar
ch er
? N
N Y
N N
Y Y
N N
N N
P ro
ce du
ra l
ri go
r w
as us
ed in
da ta
co ll
ec ti
on st
ra te
gi es
? Y
Y Y
Y Y
Y N
A Y
N A
Y Y
D at
a an
al ys
es w
er e
in du
ct iv
e? Y
Y Y
Y Y
Y Y
Y Y
Y Y
F in
di ng
s w
er e
co ns
is te
nt w
it h
& re
fl ec
ti ve
of da
ta ?
Y Y
Y Y
Y Y
Y Y
Y Y
Y D
ec is
io n
tr ai
l de
ve lo
pe d?
N A
N A
Y N
A N
A Y
N A
N A
N A
N A
N A
P ro
ce ss
of an
al yz
in g
th e
da ta
w as
de sc
ri be
d ad
eq ua
te ly
? Y
Y Y
Y Y
Y N
A Y
Y Y
Y D
id a
m ea
ni ng
fu l
pi ct
ur e
of th
e ph
en om
en on
un de
r st
ud y
em er
ge ?
Y Y
Y Y
Y Y
Y Y
Y Y
Y C
re di
bi li
ty Y
Y Y
N Y
Y N
N N
Y Y
T ra
ns fe
ra bi
li ty
Y Y
Y Y
Y Y
N Y
Y N
Y D
ep en
da bi
li ty
Y Y
Y Y
Y Y
N Y
N Y
Y C
on fi
rm ab
il it
y Y
Y Y
N Y
Y Y
Y N
Y Y
C on
cl us
io ns
w er
e ap
pr op
ri at
e gi
ve n
th e
st ud
y fi
nd in
gs ?
Y Y
Y Y
Y Y
Y Y
Y Y
Y F
in di
ng s
co nt
ri bu
te d
to th
eo ry
de ve
lo pm
en t
& fu
tu re
pr ac
ti ce
/r es
ea rc
h? Y
Y Y
Y Y
Y Y
Y Y
Y Y
T ot
al 17
16 19
14 16
19 12
15 11
14 16
T hi
s do
cu m
en t
is co
py ri
gh te
d by
th e
A m
er ic
an P
sy ch
ol og
ic al
A ss
oc ia
ti on
or on
e of
it s
al li
ed pu
bl is
he rs
. T
hi s
ar ti
cl e
is in
te nd
ed so
le ly
fo r
th e
pe rs
on al
us e
of th
e in
di vi
du al
us er
an d
is no
t to
be di
ss em
in at
ed br
oa dl
y.
286 NUSKE, RILLOTTA, BELLON, AND RICHDALE
Table 4 Overview of Studies Included in Review
Study (design) Method(s) Future research recommendations Limitations
Alverson et al. (2015) (Phenomenology)
Semi-structured interviews (twice, 6–12 months apart)
More extensive longitudinal and experimental studies.
Small sample size. Sample selection represents only
one portion of those with ASD (before 2013 diagnostic criteria change).
(protocol derived from special education, transition and ASD literature)
Family background questionnaire � field notes
Participants from narrow demographic.
No longitudinal data to explore college completion.
Anderson and Butt (2017) (grounded theory)
Unstructured interviews Larger, more diverse samples. Small convenience sample. Open-ended questions Investigate practices, policies and
programs associated with success. Only included white, high
income. Limited number of young adults
with ASD (7) included. Baric et al. (2017)
(hermeneutical) Semi-structured interviews Open-ended questions
To understand preparatory transitional activities and services during compulsory school which support move to employment or enrolling in HE.
Limited number of participants with ASD in university studies setting.
All participants from community-based vocational training centers.
Only individual view (parents, teachers not included).
Bell et al. (2017) (not stated) Semi-structured interviews (twice, pretransition and posttransition)
Tracking students through postsecondary education to identify quality of transition process, appropriateness of support, and whether students become socially integrated.
Limited scope
Cai and Richdale (2016) (not stated)
Semi-structured focus groups Research into providing appropriate educational support and into social supports.
(9 with students, 6 with family members)
(themes derived from literature relating to needs of students with ASD in higher education)
Questionnaire Dymond et al. (2017) (not
stated) Semi-structured interviews (questions derived from literature
relating to postsecondary students with disabilities and information gathered from university support staff)
Explore whether experience of parents (and university personnel) consistent with experiences of students with ASD.
One large public research university with a history of providing disability accommodations.
Case studies of specific students � parents � university personnel � support providers.
Examine perspective through lens of students with ASD themselves.
Examine relationship between university experience and postuniversity outcomes.
Only parents of students registered with Disability Services eligible to participate.
Small sample size Unable to include students with
ASD due to insufficient number of participants.
Researchers undertaking study affiliated with the university being investigated.
Madriaga and Goodley (2010) (grounded theory/dialectical and cyclical)
Interviews (over 12 month period)
Mitchell and Beresford (2014) (not stated)
Semi-structured interviews. (topic guides piloted with young people with ASD)
Explore cost effectiveness of school/ college links, extended visits to college campus.
Self-selecting sample. Presence of parents/carer during
approx. half of interviews. Peña and Kocur (2013)
(naturalistic inquiry/emergent design)
Semi-structured interviews. Include voice of students with ASD to understand transition from their point of view.
Sample only included highly educated, middle-class families from one county.
Did not include voice of students with ASD.
Simmeborn Fleischer (2012) (case study)
Interviews. Small sample size. (interview guides based on
interviews with young people with ASD participating in main study)
(table continues)
T hi
s do
cu m
en t
is co
py ri
gh te
d by
th e
A m
er ic
an P
sy ch
ol og
ic al
A ss
oc ia
ti on
or on
e of
it s
al li
ed pu
bl is
he rs
. T
hi s
ar ti
cl e
is in
te nd
ed so
le ly
fo r
th e
pe rs
on al
us e
of th
e in
di vi
du al
us er
an d
is no
t to
be di
ss em
in at
ed br
oa dl
y.
287AUTISM TRANSITION TO HIGHER EDUCATION
across five studies (C. Anderson & Butt, 2017; Baric et al., 2017; Cai & Richdale, 2016; Mitchell & Beresford, 2014; Van Hees et al., 2015). In addition, preparation for transition, and timely, appropriate support was recommended to minimize negative im- pacts on mental health and wellbeing (Baric et al., 2017; Cai & Richdale, 2016; Van Hees et al., 2015).
Microsystem. At the microsystem level, individuals with ASD described within these studies had support from family members, as well as professionals and staff within both the sec- ondary school and postsecondary education settings.
Family support. All 11 studies addressed the significant role played by parents during the transition period. Family members were reported as playing a significant role in providing emotional and psychosocial support to individuals with ASD during this transition period (Baric et al., 2017; Cai & Richdale, 2016; Dymond et al., 2017; Mitchell & Beresford, 2014; Van Hees et al., 2015). Three studies also described parents taking on an active role in supporting their son or daughter with disclosing or initiating access to support services (Bell et al., 2017; Cai & Richdale, 2016; Peña & Kocur, 2013).
Professional support. Participants in three studies described positive experiences associated with professionals involved in the transition process (Bell et al., 2017; Cai & Richdale, 2016; Mitch- ell & Beresford, 2014). Participants who took part in the study conducted by Mitchell and Beresford (2014) described profession- als as undertaking two specific roles: (a) supporting and engaging with planning, and (b) providing information. The participants reportedly valued support provided by professionals who were honest, reliable, provided information that was clear and easy to understand (written and verbal), and who had a knowledge and understanding of ASD. The importance of professional’s knowl- edge of ASD was also echoed by parents in Peña and Kocur’s (2013) study. Parents within this study reported feeling that faculty members were unprepared for students with ASD and lacked awareness or knowledge of the disability.
Mesosystem. At the mesosystem level, studies demonstrated the importance of effective collaboration between all elements of the microsystem, including family members, professionals, and educational staff.
Collaboration. Six studies highlighted the importance of sec- ondary schools, families and higher education staff working col- laboratively together (Alverson et al., 2015; C. Anderson & Butt, 2017; Baric et al., 2017; Cai & Richdale, 2016; Dymond et al.,
2017; Simmeborn Fleischer, 2012) to support the transition pro- cess.
Exosystem. Issues related to the exosystem level were noted in six studies (Alverson et al., 2015; C. Anderson & Butt, 2017; Cai & Richdale, 2016; Dymond et al., 2017; Peña & Kocur, 2013; Van Hees et al., 2015). These issues predominantly revolved around the impact of legislation relating to transition and higher education.
Issues related to the influence of policy and legislation were most commonly present in U.S. studies. Difficulties were associ- ated with the implementation of transition support programs or services as outlined within the Individuals with Disabilities Act (IDEA; 2004). While it is a requirement of IDEA to implement a formal postsecondary transition plan (VanBergeijk et al., 2008), experiences of these processes varied greatly (Alverson et al., 2015; C. Anderson & Butt, 2017; Dymond et al., 2017). Where participants experienced effective formal transition support they developed clear postsecondary goals, eventually leading to suc- cessful adaptation and adjustment to higher education (Alverson et al., 2015; Dymond et al., 2017). However, some participants described transition services that did not provide this same level of coordination, experiencing a lack of formal planning, or effective follow up of goals and plans (C. Anderson & Butt, 2017; Dymond et al., 2017). Australian participants reported similarly varied experiences (Cai & Richdale, 2016). Where formal transition planning was not evident, students consequently felt unprepared for the transition to higher education (Cai & Richdale, 2016). In Ireland, where formal transition planning is not mandated, formal transition planning was lacking (Bell et al., 2017). Transition to higher education or work was not specifically included in the participant’s individual education plans, and in some cases this resulted in students needing to find alternative pathways into higher education as the result of undertaking courses that did not lead directly to higher education opportunities.
Another exosystem element, which affected the experiences of students and family members within three of these studies, was that of privacy legislation (Cai & Richdale, 2016; Dymond et al., 2017; Peña & Kocur, 2013). A number of parents reported barriers presented by the implementation of privacy and confidentiality policies within higher education settings in response to legislative requirements. While these policies are implemented to protect the individual’s privacy and confidentiality, it is also evident that individuals with ASD rely heavily on support from family mem-
Table 4 (continued)
Study (design) Method(s) Future research recommendations Limitations
Van Hees et al. (2015) (grounded theory)
Semi-structured interviews Examine perspectives of parents, disability service providers, informal support networks.
Possible selection bias. Self-report qualitative data.
Parent’s potential role in student transition to HE.
Use of standardized measures of anxiety and stress.
Development of intervention services which are evidence based and can moderate impact of mental health issues.
Note. ASD � autism spectrum disorder.
T hi
s do
cu m
en t
is co
py ri
gh te
d by
th e
A m
er ic
an P
sy ch
ol og
ic al
A ss
oc ia
ti on
or on
e of
it s
al li
ed pu
bl is
he rs
. T
hi s
ar ti
cl e
is in
te nd
ed so
le ly
fo r
th e
pe rs
on al
us e
of th
e in
di vi
du al
us er
an d
is no
t to
be di
ss em
in at
ed br
oa dl
y.
288 NUSKE, RILLOTTA, BELLON, AND RICHDALE
T ab
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T hi
s do
cu m
en t
is co
py ri
gh te
d by
th e
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er ic
an P
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hi s
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an d
is no
t to
be di
ss em
in at
ed br
oa dl
y.
289AUTISM TRANSITION TO HIGHER EDUCATION
bers, in many cases to assist them in the process of disclosure, as required to access necessary supports and reasonable adjustments (Bell et al., 2017; Cai & Richdale, 2016; Peña & Kocur, 2013). In addition, Mitchell and Beresford (2014) found no evidence that support provided by family members was unwelcome, which raises the question of whether this legislation may in fact be creating unnecessary barriers for students with ASD transitioning to higher education.
Macrosystem and chronosystem. Discussion of macrosys- tem and chronosystem elements of student experiences was absent in these studies. Only three studies included within this review were from the United Kingdom or Australia, where individualized payment systems are already in place, it is interesting that none of the participants described experiences associated with supports accessed through these systems.
Methodological limitations of studies reviewed. Scores on the McMasters Critical Review Form: Qualitative Studies (Letts et al., 2007) varied significantly. A clearly defined theoretical per- spective was missing from all but three of the included studies, and only two studies clearly identified assumptions and potential bias of the researcher conducting the study. Further research using a clearly defined theoretical perspective and acknowledgment of existing assumptions or bias may help to improve the quality and interpretability of the research conducted.
The studies included in this review all had relatively small sample sizes, which while appropriate to the case study method- ology used in most, provided only a limited snapshot of the experiences of individuals with ASD transitioning to higher edu- cation. Participants in a number of studies were also recruited from relatively narrow demographic groups (e.g., White, high income, and middle class), which significantly limited the generalizability of the results. In over half of the studies, participants were only eligible if they could provide evidence of a formal diagnosis or if they had already registered with their institution’s disability ser- vice. Therefore, individuals who identified as having ASD but had not received a formal diagnosis were not represented in these studies. The majority of studies also only explored the perspectives of one group (individual, family, or staff/professionals), and did not compare these perspectives simultaneously. Only three studies included perspectives of both the individual and family members concurrently (C. Anderson & Butt, 2017; Bell et al., 2017; Cai &
Richdale, 2016). Concurrent exploration of these perspectives may have helped to clarify the issues experienced and determine whether the perspectives of individuals with ASD and other mem- bers of their support network are in fact similar. The inclusion of siblings was also minimal, with only two studies including a sibling when exploring perspectives of family members (Cai & Richdale, 2016; Simmeborn Fleischer, 2012).
Discussion
This study extends upon previous research into the experiences of individuals with ASD in higher education. In addition, this review utilized the bioecological theory model to examine in detail, the experiences of individuals with ASD, and their family members, during the transition to higher education. The following discussion will explore these findings in more detail, with consid- eration of the ways in which the various elements of the bioeco- logical theory model within which this transition exists, interact to impact on the experiences of the individual and their family member/s.
Bioecological Theory and Experiences of Higher Education
Findings from these studies suggest the core and associated characteristics of ASD may create additional challenges for stu- dents with ASD when transitioning to higher education. In partic- ular, difficulties associated with social-communication skills, ex- ecutive functioning skills, and independent living skills may result in students needing supports and accommodations beyond those typically provided within higher education. In addition, the differ- ences in manifestation of these characteristics of ASD for each individual (Alverson et al., 2015; Madriaga & Goodley, 2010) will necessitate an individualized approach to supports provided.
Regardless of diagnosis, no two individuals will have the same difficulties, experiences or needs. This is particularly the case for individuals with ASD who may exhibit the core and associated characteristics of ASD across a broad spectrum. Students with ASD are often provided with traditional adjustments such as additional time in exams or tests, or an alternative setting within which to sit these assessments, yet these adjustments may be
Table 6 Overview of Key Concepts Within Each Study Categorized Using the Bioecological Theory Model
Study
Individual Microsystem Mesosystem Exosystem Macrosystem
Characteristics of ASD
Self-awareness and disclosure
Mental health and wellbeing
Family support
Professional support Collaboration
Transition prog/ planning
Privacy legislation
Not addressed
Alverson et al. (2015) x x x x x Anderson and Butt (2017) x x x x x Baric et al. (2017) x x x x Bell et al. (2017) x x x x Cai and Richdale (2016) x x x x x x x x x Dymond et al. (2017) x x x x x x x Madriaga and Goodley (2010) x x Mitchell and Beresford (2014) x x x x x Peña and Kocur (2013) x x x x x Simmeborn Fleischer (2012) x x x x Van Hees et al. (2015) x x x x x x
Note. ASD � autism spectrum disorder.
T hi
s do
cu m
en t
is co
py ri
gh te
d by
th e
A m
er ic
an P
sy ch
ol og
ic al
A ss
oc ia
ti on
or on
e of
it s
al li
ed pu
bl is
he rs
. T
hi s
ar ti
cl e
is in
te nd
ed so
le ly
fo r
th e
pe rs
on al
us e
of th
e in
di vi
du al
us er
an d
is no
t to
be di
ss em
in at
ed br
oa dl
y.
290 NUSKE, RILLOTTA, BELLON, AND RICHDALE
inappropriate or may not effectively address the specific needs of this population (Barnhill, 2016; Brown & Coomes, 2016; VanBer- geijk et al., 2008). For higher education to be truly inclusive, institutions need to go beyond providing these traditional adjust- ments, and consider the needs of the individual, to ensure all students can participate fully within their educational setting. The need for individualized approaches to support strategies was also noted in the studies included within this review. For example, in the study conducted by Madriaga and Goodley (2010) not all participants felt that accommodations provided, were necessary or appropriate. Some participants felt that the accommodations they received benefited them, for example having a separate location for sitting their exams or tests, allowed them to access adjustments without having to disclose or explain their reasons for accessing these to their peers; however, others felt that these arrangements resulted in feelings of segregation.
Similar to recommendations made by Kuder and Accardo (2018), this review highlighted the importance of the provision of adjustments and supports which are individualized and address the nonacademic needs of individuals with ASD. To appropriately address the diverse needs of individuals with ASD, early engage- ment with relevant disability service staff within the HEI is critical to identify and implement effective and relevant adjustments and supports in a timely manner. However, as studies within this review have identified there are a number of individual and sys- temic (exosystem) barriers that may make this process more chal- lenging for individuals with ASD.
To access supports and accommodations within higher educa- tion, a student must first identify and acknowledge their need for these supports. Students must then disclose their disability to relevant staff in order for supports and adjustments to be identified and implemented (Adreon & Durocher, 2007; Rocco, 2001; Zeedyk et al., 2016), yet some students with ASD may not identify as having a disability (Shattuck et al., 2014). Consistent with the findings of A. H. Anderson et al. (2018), some participants within the studies reviewed, delayed disclosing their disability to aca- demic or professional staff within their HEI. Whether the decision to delay disclosure is made because of difficulties with understand- ing or navigating the process, or is a conscious choice by the individual, the delay in disclosing and accessing support may impact on the individual’s overall higher education experience (A. H. Anderson et al., 2018). The need to develop skills in self-advocacy and self-disclosure before commencing higher edu- cation has been highlighted in previous literature (Barnhill, 2016; Elias & White, 2018). However, it appears these difficulties con- tinue to pose challenges, and there remains a gap between the skills of individuals with ASD in disclosing and self-advocating, and the expectations of the HEIs within which they are enrolling. While emphasis should continue to be placed on developing effective self-advocacy skills before commencing higher education, perhaps HEIs should consider new strategies for engaging with students with ASD who are transitioning into higher education, to provide a more effective mechanism for self-disclosure and consequently accessing relevant support and accommodations they may require. Providing online mechanisms for disclosure and registration with disability support services within HEIs or developing formal pro- cesses that allow for effective parental support in the early stages of transition, may help to address some of these disclosure related difficulties.
As Pinder-Amaker (2014) suggests, the transitional years mov- ing from secondary to postsecondary education, are a “peak period of onset of major psychiatric illnesses” in typically developing individuals (p. 126). The transition to higher education has also been associated with an increase in stress and anxiety levels for students with ASD (VanBergeijk et al., 2008). Therefore, it is not surprising that the mental health and wellbeing of students, was highlighted within a number of the studies reviewed. Cai and Richdale (2016) suggest effective early preparation and planning, which ensures timely access to supports, is important in minimiz- ing the increases to stress and anxiety, which are commonly reported by individuals with ASD during this transition period. This was a recommendation also supported by Baric et al. (2017) and Van Hees et al. (2015). It appears that formal transition planning is linked to better adjustment and wellbeing in the tran- sition to higher education, however, even in the United States, where this was mandated through legislation, it was not always implemented consistently or effectively. This demonstrates a sig- nificant gap between legislation (exosystem) and implementation (individual/microsystem). As such, there is clearly a need for further investigation of how this legislation is being implemented, with the aim of developing more effective links between the legislative requirements and implementation of these programs to improve the transition and adjustment of students with ASD to higher education.
Support from family members, in particular parents, was by far the most common microsystem element described by participants within these studies. Parents were seen to be providing supports such as “coaching” and “encouraging” (Peña & Kocur, 2013). Other supports provided by parents included coordination of the transition process, help with organization, and financial support (Alverson et al., 2015; Cai & Richdale, 2016; Dymond et al., 2017; Mitchell & Beresford, 2014). These findings further demonstrate the complex interaction between the individual and their support networks, which exist within the microsystem level, to support effective transition to higher education.
In addition to family members, participants also reported receiv- ing support from professionals in roles across both the secondary school (e.g., career guidance, teaching staff) and higher education settings (e.g., disability services staff, counseling, and faculty staff). In some situations, participants also described support pro- vided by other external support services (e.g., therapists, psychol- ogists, or counselors).
Similar to disclosure, collaboration can only occur when the student has acknowledged and accepted the need for assistance (Simmeborn Fleischer, 2012). Collaboration between family mem- bers and HEI staff was also made more difficult as the result of barriers imposed by relevant privacy legislation and institutional policies (Cai & Richdale, 2016; Dymond et al., 2017; Peña & Kocur, 2013). Elements such as these, at the exosystem level appear relatively distant from the individual, yet their impact on the individual and their support networks can be significant. As Lester (2014) points out limited research has been conducted into how individuals view and make sense of the relevant policies and programs that have been developed to support their post school transitions. Therefore, this is a key area for further consideration in future studies.
Pinder-Amaker (2014) noted, societal beliefs about inclusion and resulting emphasis placed on inclusive practice within higher
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education may impact on individuals with ASD at the macrosys- tem level. However, experiences related to macrosystem elements were not discussed in the studies reviewed. While historical events, such as the adoption of the UNCRPD may have influenced the experiences of students with disabilities in higher education in recent years, these chronosystem elements were also not discussed by participants within the studies reviewed; therefore, warranting further exploration.
Strengths and Limitations
This study included five major strengths. For the first time it: (a) included an examination of the perspectives of both students with ASD and their family members; (b) included a purposive focus on the experience of transition to higher education; (c) included qualitative data from mixed methods studies; (d) was conducted within a theoretical framework, the bioecological theory model (Bronfenbrenner, 1979); and (e) used the McMasters Critical Re- view form: Qualitative Studies (Letts et al., 2007) to evaluate the quality of the studies reviewed.
This review also extended upon the studies included in the systematic review by Toor et al. (2016), with five articles in the current review published since 2016. The focus on transition experiences specifically and the inclusion of family members were also unique to the present review.
Nevertheless, there are some limitations, which should be ac- knowledged. While the critical appraisal tool used to evaluate the included studies provided a valuable method of assessing the quality of the studies, it did not necessarily allow for more in depth consideration of methodological differences among studies. The review was also limited to an exploration of published, peer reviewed research articles. Additional, potentially relevant data from theses and published reports, were excluded from this review. Given this is a rapidly expanding area of investigation these additional sources may have provided additional, valuable infor- mation.
Recommendations for Future Research
Recommendations for future research identified within the in- cluded studies are outlined in Table 4. Recommendations focused on conducting longitudinal studies to explore outcomes of transi- tion support and social integration; investigating the experiences of individuals with ASD during their transition and studies in higher education; and exploring the concurrent experiences of students, staff, and family members. Given these recommendations, and the limitations of these studies, future research should consider a larger and more diverse participant group, exploring experiences across a broad range of HEIs. Longitudinal studies should also be considered, to further explore strategies and experiences that are related to successful outcomes for students with ASD transitioning into higher education. The lack of research providing data on outcomes for students with ASD in higher education is also high- lighted in recent reviews conducted by Kuder and Accardo (2018) and Zeedyk et al. (2016). Future research may need to examine the impact of transition processes, support and accommodations on longer-term outcomes for students with ASD in higher education. It should also explore the perspectives of individuals, family members, professionals, and educational staff to develop a deeper
understanding of the needs and experiences of individuals with ASD during this transition process. Given the complex nature of this transition experience, the bioecological theory model provides a valuable framework for further exploration of these experiences.
While a number of studies identified challenges directly linked to the core characteristics of ASD; interestingly, there was limited use of comparison groups within these studies. Further exploration and comparison to other commencing student cohorts may help to more clearly identify those experiences unique to students with ASD. Van Hees et al. (2015) also suggested further exploration of the impact of mental health issues using standardized measures would provide the opportunity for further examination of the impact of comorbid conditions such as anxiety and depression on the transition process for individuals with ASD. Studies comparing the experiences of students with ASD to those of students without ASD, both with and without anxiety may provide additional clar- ification concerning the contribution of these co-occurring condi- tions.
Implications for Practice
It is important for those who work to support students with disabilities in the higher education setting to be aware of the complex interaction of elements, which affect the transition expe- riences for individuals with ASD. Consideration needs to be given to the challenges faced by individuals with ASD and their family members during this transition process. For individuals with ASD these challenges may relate to the core characteristics and associ- ated characteristics of, and comorbid conditions associated with, ASD; however, it is important to also acknowledge the unique strengths and skills that these students also possess. It is imperative that an individualized approach is taken, to ensure accommoda- tions provided are effective and appropriate to meeting the specific needs of each student (A. H. Anderson et al., 2018; Barnhill, 2016; Brown & Coomes, 2016; Cai & Richdale, 2016; Madriaga & Goodley, 2010; Van Hees et al., 2015). While traditional supports and accommodations available for students with disabilities may benefit some students with ASD, others may find these to be unnecessary or irrelevant to their specific needs. This may require consideration of implementing social communication and organi- zational support strategies beyond those typically provided to commencing students in higher education. This finding reiterates previous recommendations that suggest students with ASD in higher education may require supports beyond those typically provided for students with disabilities that consider both academic and nonacademic skills (Gelbar et al., 2014; Kuder & Accardo, 2018). An individualized approach may not only apply to the accommodations made for students once they have enrolled and commenced their studies. Individualized and targeted transition support opportunities may also be beneficial for individuals and their family members when preparing for and undertaking the transition to higher education.
Ideally, staff who provide disability support and services within HEIs should provide a first point of contact for students with ASD who are seeking adjustments or accommodations to engage with their studies. These staff should have a sound knowledge and understanding of ASD and the needs of these students, and should provide information in a clear and easy to understand format. The provision of this information in a written format may provide
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students with a valuable opportunity to discuss this information with their relevant support networks such as family members or professionals to better identify and voice their needs for support within the higher education setting. Implementing these strategies and providing the opportunity for simple and effective disclosure to occur, is likely to lead to supports and strategies being imple- mented in a timely and efficient manner. However, as Cai and Richdale (2016) point out, this may require the provision of additional staff and, thus, an increase in funding for disability support services within higher education.
As highlighted in this review, consideration must be given to the difficulties students with ASD may experience in expressing and discussing the challenges they face or the supports they require when commencing higher education studies. Disability service staff within HEIs may need to consider developing an alternative approach to providing assistance to students with ASD during this transition period. This approach must be a careful balance between the student’s right to privacy, confidentiality, and self-determination, and the identified need for additional parental or family support in accessing services to manage difficulties they may experience during their transition to higher education. Ways in which family members of students with ASD can be involved in the transition process without interfering with the growth and development of the student as an adult learner within the higher education setting also need to be addressed. Developing a new approach may appear challenging when faced with institutional policies and privacy legislation; however, delays in seeking the required support and adjustments to successfully engage in higher education may have a detrimental effect on these students’ higher education experience.
The varied experiences of transition support programs described by participants within these studies highlights the need for effec- tive programs to facilitate the transition of students with ASD into higher education. Further exploration of existing transition support programs and identification of key stakeholders in this area may help to define and improve future transition support practices. Transition programs developed collaboratively between the sec- ondary education and higher education setting, may also be ben- eficial.
Conclusion
The present review updates our insights into a rapidly expanding and significant area of research investigating the experiences of students with ASD who are transitioning to higher education. Additionally, this review explored the experiences of family mem- bers, in supporting students with ASD during this period. By examining the perspectives of individuals and their family mem- bers using the bioecological theory model, this review demon- strates the complex interactions, which impact on the experiences of students with ASD in their transition to higher education. A deeper understanding of the experiences of individuals with ASD and their families during this transition period to higher education, will allow HEIs to consider more targeted and effective ap- proaches to transition for these students. This will lead to more effective and successful transition experiences for individuals with ASD who are commencing their studies in the higher education setting, and inform more inclusive practices for supporting these students.
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Zeedyk, S. M., Tipton, L. A., & Blacher, J. (2016). Educational supports for high functioning youth with ASD: The postsecondary pathway to college. Focus on Autism and Other Developmental Disabilities, 31, 37– 48. http://dx.doi.org/10.1177/1088357614525435
Received April 20, 2018 Revision received August 23, 2018
Accepted December 21, 2018 �
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295AUTISM TRANSITION TO HIGHER EDUCATION
- Transition to Higher Education for Students With Autism: A Systematic Literature Review
- Aim
- Method
- Bioecological Theory and Transition to Higher Education
- Findings
- Quality of Study Methodology
- Study Characteristics
- Individual
- Challenges related to the characteristics of ASD
- Self-awareness/disclosure
- Mental health and emotional wellbeing
- Microsystem
- Family support
- Professional support
- Mesosystem
- Collaboration
- Exosystem
- Macrosystem and chronosystem
- Methodological limitations of studies reviewed
- Discussion
- Bioecological Theory and Experiences of Higher Education
- Strengths and Limitations
- Recommendations for Future Research
- Implications for Practice
- Conclusion
- References
