Running head: ASD AND POSITIVE FAMILIAL EFFECTS
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Autism Spectrum Disorders and Positive Familial Effects
Genevieve Weaver
A Senior Thesis submitted in partial fulfillment
of the requirements for graduation
in the Honors Program
Liberty University
Fall 2019
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Acceptance of Senior Honors Thesis
This Senior Honors Thesis is accepted in partial
fulfillment of the requirements for graduation from the
Honors Program of Liberty University.
______________________________
Lucinda Spaulding, Ph.D.
Thesis Chair
______________________________
Lisa Foster, Ph.D.
Committee Member
______________________________
David Schweitzer, Ph.D.
Assistant Honors Director
______________________________
Date
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Abstract
Autism Spectrum Disorders (ASD) have been found to significantly impact familial structures
and outcomes in various studies. The majority of the impact, however, has been primarily
negative; effects like increased stress, marital discontentment, and stigmatization are commonly
expressed by families. In this study data from a questionnaire, interview, and picture
presentations were analyzed and triangulated to identify the positive familial effects of having a
child or sibling with ASD. Parents and siblings shared that having a child or sibling with ASD
has bettered their life through learning to enjoy the identity of the individual with ASD, through
personal growth, and thorough positive environmental differences. These findings encourage
further research into how individuals with ASD positively influence families and society.
Keywords: ASD, Positive Perceptions, Positive Effects, Family Systems, ASD Siblings
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Autism Spectrum Disorders and Positive Familial Effects
Overview
As one of the most increasingly prevalent developmental disorders, autism spectrum
disorder (ASD) serves as a label for a range of atypical behaviors and developmental delays.
According to the Center for Disease Control, about one in fifty-nine children were diagnosed
with an autism spectrum disorder in 2014 (Baio et al, 2018). Usually diagnosed from ages two to
five, ASD is a childhood disorder that has an unknown cause, no established prevention or
intervention method, and no cure (Parritz & Troy, 2018). ASD drastically affects how “one
communicates and experiences the world,” often observable in language deficiencies, social
difficulties, repetitive behaviors, and restricted interests (Autism spectrum disorder, 2017, p.1).
As a complex disorder that is affected by genetics, pre-natal environment, neurobiology, and
interacting bodily systems, ASD is known for being “heterogeneous [and] impacting each
individual differently” (Boutot, 2017, p. 20). The symptoms of ASD can vary in manifestation
and can change as the individual matures, making consistent intervention and progress difficult.
With the increased prevalence of ASD over the past decades and the significant impact
on daily life associated with the disorder, families with children who have been diagnosed with
ASD face a unique challenge unlike nonaffected families. Language deficiencies change familial
communication, social difficulties affect familial understanding, and behaviors such as repetitive
actions or restricted interests impact familial functioning. While significant amounts of research
regarding ASD causes, interventions, and behaviors has been conducted, there is much left
unexplored concerning how ASD positively impacts individuals within family units.
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Literature
The majority of literature that addresses the influences on the family of having a
child/sibling with ASD focused on how the family is negatively affected. Much of the literature
also does not analyze ASD specifically, but instead looks at developmental disabilities as a
whole in their effects on the family unit. Using keywords such as ASD, quality of life, autism,
siblings, family, and parental perceptions, various studies were found to be pertinent to the
discussion of how a child with ASD affects individual members and the family as a whole.
In a systematic analysis of parents’ reports of their life with a child with ASD, Myers,
Mackintosh, and Goin-Kochel (2009) found that, of the parental responses, 48% presented a
negative tone throughout, 39% had a mixed tone of both negative and positive statements, 10%
were positive in tone, and 3% were marked as unclear. This data shows a marked inclination
toward the negative impacts of ASD on the family, leading to the assumption that parents
identify more negative than positive effects of ASD. This can be attributed to the finding that
families affected by ASD report higher stress and lower quality of life than families with non-
ASD members, whether they be neurotypical (Baker-Ericzén, Brookman-Frazee, & Stahmer,
2005; Estes et al., 2009; Vasilopoulou & Nisbet, 2016) or with other developmental disabilities
(Dabrowska & Pisula, 2010; Dunn, Burbine, Bowers, & Tantleff-Dunn, 2001). The following
analysis utilizes the categories of stress laid out in Seligman and Darling’s (2007) book,
Ordinary Families, Special Children, but extends the structure to include the reported positive
aspects of life with an individual with ASD.
Intellectual Effects
Intellectual stresses as seen in the shock of a diagnosis can be a traumatic experience for
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families and is described with language like “a thunderbolt” or “shattered dreams” (Oprea &
Stan, 2012, p. 3). The battle of intellectual stress is related to the family’s ability to comprehend
the nature of the disability and gather the information needed to continue. Through the search for
an accurate diagnosis, intervention or etiology, parents can receive many different opinions or
technical information, possibly leading to unproven methods of treatment (Seligman & Darling,
2007). In one study, intellectual stress was the highest reported type of stress for family members
of an individual with intellectual disability (Simson, 2013). Parental understanding of their child
seems to increase as familiarity with their child’s diagnosis increases, as evidenced primarily
through qualitative studies (Welteroth, 2001; Cascio, 2012). A seemingly common coping
mechanism of intellectual stress is the tendency of parents to separate their child from the
disorder, seeking who their child may have been without ASD (Hines, Balandin, & Togher,
2011).
Instrumental Effects
The instrumental stresses of families affected by ASD are of a practical nature, such as
care-giving burdens or financial impact. The care-giving responsibility of parents for their child
with ASD is a primary cause of stress. Factors that lead to care-giving related stress include the
severity of the child’s ASD-related behaviors (Estes et al., 2009; Vasilopoulou & Nisbet, 2016;
Wayment & Brookshire, 2017; Myers et al., 2009) and the prolonged/constant nature of the care-
giving (Dardas & Ahmad, 2014; Green, 2007). Caregivers, primarily parents, are likely to ignore
their own health needs, leading to physical exhaustion or lack of sleep (Dardas & Ahmad, 2014;
Vasilopoulou & Nisbet, 2016). The monetary impact of raising a child with a developmental
disability is one of the most commonly reported concerns (Dardas & Ahmad, 2014; Green,
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2007). Within the population of families affected by disability, quality of life and income are
often positively correlated due to expensive interventions and medications (Vasilopoulou &
Nisbet, 2016). The fact that many mothers struggle to maintain employment when their child has
a severe disability also adds to the cycle (Vasilopoulou & Nisbet, 2016). The only instrumental
positive theme identified was the development of skills or passion for one’s occupation (Hastings
& Taunt, 2002).
Emotional Effects
Another important aspect of the stress put on families affected by ASD is the emotional
stress of diagnosis and life with the affected individuals. The grief associated with receiving any
diagnosis is understandable (Simson, 2013), but, while traumatic, dissipates over time and as the
parent adjusts (Green, 2007). The grief related to ASD diagnosis, though, is unique among
developmental disabilities as it is delayed and can lead to extended periods of distress and
hopelessness (Wayment & Brookshire, 2017). Fathers have described their child’s diagnosis as
“comparable to the loss of a typically developing child” (Burrell, Ives, & Unwin, 2017, p.1135).
In her 1987 poem, Emily Perl Kingsley described her experience of having a child with special
needs through the metaphor of eagerly planning for a trip to Italy, only to arrive in Holland.
Kingsley (1987) makes special note that while the grief for Italy is significant, Holland, too, has
many beautiful things to offer. Mothers in particular experience increased levels of depression
(Dardas & Ahmad, 2014) and psychological distress (Estes et al., 2009). One significant and
common predictor of this distress is identity ambiguity, defined as an unhealthy inability to
separate one’s identity from their child’s disability (Wayment & Brookshire, 2017). No studies
were found that relate this concept to sibling relationships.
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Furthermore, the emotional complexities of having and raising a child with disabilities is
explained as “the embrace of the paradox [of] loving the child as he or she was and wanting to
erase the disability” (Larson, 1998, p. 875). This conflict is expressed in many other studies and
despite the complications, many parents shared feelings of pride (Green, 2007). One of the less
common but significant emotional effects is that in many anecdotal articles, parents with children
with ASD call for acceptance of their child instead of wishing for their child to be neurotypical
(Welteroth, 2001). This perspective is consistent with the neurodiversity movement, which
celebrates the strengths of ASD (Baron-Cohen, 2019) and appeals to mothers’ understanding of
their child’s behaviors (Cascio, 2012). This kind of pride is seen primarily in qualitative
research; one parent even “describe ways in which autism may have contributed to valued
aspects of [her son’s] personality” (Hines et al., 2011, p. 20).
Interpersonal Effects
Interpersonal stress is another commonly reported effect of having a child or sibling with
ASD. In a study on the predictors of outcomes for parents of individuals with ASD, Dunn et al.
(2001) found that the most powerful coping mechanisms parents used led to increased social
isolation. A variety of factors led to these parents’ understanding that they are not accepted in
society. Often feeling marginalized or judged by society, parents believe that the stigma of
having a child with a disability is widespread (Oprea & Stan, 2012; Welteroth, 2001). Parents in
a qualitative study “revealed belief that their son’s or daughter’s challenging behaviors reflected
on them as parents” (Hines et al., 2011, p.21). Siblings also reported interpersonal stress with
themes of loneliness, depression, and other socially inhibitory feelings (McNamara, 2012). The
opinions and suggestions of extended family members also exacerbate social isolation (Myers et
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al., 2009). Mothers reported an increased exposure to individuals with disabilities as a positive
social effect, but this was not extended to ASD (Green, 2007).
Another significant effect of having a child with developmental disabilities is the effect
on one’s marriage. Due to the caregiving responsibilities, financial burden, social isolation, and
other stresses, martial issues are extremely prevalent between partners who share a child with
special needs (Oprea & Stan, 2012; Hastings et al., 2005; Green, 2007; Schneider, 2017). Fathers
tend to have elevated levels of stress surrounding their wives’ stress rather than associated with
their child’s ASD (Baker-Ericzén et al., 2005). Hu, Han, Bai, and Gao (2019) found that in
addition to strict adherence to distinct roles, “heightened demands might deplete parents’
opportunities to become highly involved in interactions with their co-parents” (p. 3994).
Alternatively, other findings demonstrate marriage has the potential to be strengthened by having
a child with a developmental disability (Hastings & Taunt, 2002; Myers et al., 2009). One study
found that optimism and use of support increased parent relationship satisfaction (Ekas,
Timmons, Pruitt, Ghilain & Alessandri, 2015).
Existential Effects
While not extensively researched, there is evidence that having a child or sibling with a
developmental disability affects how one understands the purpose of life. Explained by Seligman
and Darling (2007) as the ability of an individuals or family to “construct an explanatory
meaning framework” (p. 43) for their lived experience, the existential effects of having a child or
sibling with ASD rely heavily on the contextual schema of the family. Research suggests that
parents of a child with ASD are likely to respond positively to survey items that are religion
based or that look to God for purpose (Hastings & Taunt, 2002; Myers et al., 2009). Meaning-
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making, as both a coping mechanism and existential exercise, is a precursor for familial
resilience (Myers et al., 2009; Bekhet, Johnson, & Zausziewski, 2012) and has been shown in
non-disability related studies as a crucial aspect of surviving crisis (Ebersole & Flores, 1989);
Cranney, 2013). Themes of hope for recovery (Oprea & Stan, 2012), being chosen as the parent
for a unique child, and a positive understanding of the meaning of life were some of the most
predominant existential effects expressed (Hastings & Taunt, 2002; Myers et al., 2009).
Conclusion
It is evident that families with individuals with developmental disabilities report positive
perceptions, but this does not extend to the literature on ASD (Hastings & Taunt, 2002). While
ASD researchers occasionally discuss positive perceptions, the literature specifically addressing
ASD does not consistently highlight positive impacts or perceptions (Hastings et. al, 2005). It is
important for individuals to understand how they are positively impacted by their family member
with ASD because these attitudes are significant predictors of their quality of life. Not only is a
high quality of life important for the individual, but it is also important for a family unit as the
quality of life of one affects every other member (Seligman & Darling, 2007). The quality of life
for parents heavily impacts the quality of life for children, especially those with ASD (Dardas &
Ahmad, 2014). For this reason, it is crucial to conduct research that examines the positive
impacts of children with ASD and to share these findings with other families as an
encouragement and as an example of what can be cherished about their child. These findings also
have implications for educators and professionals in providing related services.
Methods
The purpose of this qualitative study was to explore the shared experiences of immediate
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family members of individuals with ASD by identifying what traits and experiences they
associate with a positive outcome related to the individual with ASD.
Design
Through the use of a qualitative research method, a voice was given to families who are
rarely asked about what positive effects their child or sibling brings to their life. Inspired in part
by the emphasis on the visceral connection created by story swapping as described in Green’s
2003 study, the qualitative method was chosen to create an environment of authentic
conversation to reveal in-depth understanding. By addressing the participants from the
perspective of positivity, I was able to holistically address the literature gap on the positive
aspects of ASD. The purpose of the study was to generate deep understanding through a
posteriori variables and intimate questions. I further defined my methods to a transcendental
phenomenological study to describe the realities of families through shared experience. By
creating an environment for storytelling, picture showing, and bragging, the experienced positive
impacts of ASD were shared honestly. In an effort to understand the experience of having a child
with ASD, researchers must not look only at the negatives. One must also encourage parents and
siblings by listening to the positives of their experience with ASD.
Participants
The target population was mothers, fathers, and siblings of individuals with ASD. This
specific population enabled the research question to be answered because family members have
authentic perspectives of what ASD looks like daily and therefore, provide insightful and
authentic answers about the positive effects on aspects of theirs’ and their child or sibling’s life.
Participants were recruited from an email list of parents whose children are identified and
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receive services for ASD in Keller Independent School District in Keller, Texas. Participants
received an email from the parent-district liaison with a recruitment letter with an embedded link
which led them directly to the anonymous questionnaire. There were twelve questionnaire
participants, all of which reported as mothers. One participant was Black or African American,
another denoted “other” as to their ethnicity, and the remaining ten were White.
The participants of the interview were far more varied. A total of twelve people
participated from seven different families. A total of six mothers, three fathers, two sisters, and
one brother participated in interviews. Four of the participants were Hispanic, two were
Black/African American, and the remaining six were white as seen in Table 1. Ages of
participants or children with ASD were not systematically collected, but were discussed during
interviews. While I did not sample or control for this, three of the seven families have a child
with ASD who is minimally verbal, whereas the other four have functionally verbal children.
The third measure was placed during the interview, so participants remain the same for the
picture presentation. Pseudonyms are used to describe families and maintain confidentiality.
Data Collection
The first research measure used was a researcher-created questionnaire (see Appendix A)
with multiple-choice answers. I chose to design a questionnaire for descriptive purposes, rather
than for generalizing. The option to write in one’s own answer was offered as one of the multiple-
choice options to not limit the responses of participants who would not complete the interview.
This questionnaire was used to obtain preliminary data in direct correlation to the literature review
in an anonymous setting. With the question stem “Because of my child with autism…” the
questions asked participants about intellectual, instrumental, emotional, interpersonal, and
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Table 1
Participant Information
Pseudonym
Gender
Role
Ethnicity
Child or Sibling Pseudonym
Sara
Female
Mother
Hispanic
Luis, Tomás, & David
Benjamin
Male
Father
Hispanic
Luis, Tomás, & David
Camila
Female
Sister
Hispanic
Luis, Tomás, & David
Jessica
Female
Mother
White
Hunter
Heather
Female
Mother
White
Jason
Sophia
Female
Mother
Hispanic
DeShane
Alicia
Female
Mother
Black/African American
Leila
Darius
Male
Father
Black/African American
Leila
Nicole
Female
Mother
White
Michael
Megan
Female
Sister
White
Michael
James
Male
Brother
White
Michael
John
Male
Father
White
Noah
existential effects of having a child with autism. After completing the questionnaire, participants
had the opportunity to follow a link to participate in an interview.
The second research method was a semi-structured interview (see Appendix B).
Questions were informed by my review of the literature and personal experience working with
individuals with autism and their families. Through open-ended questions directed towards
participant storytelling, the participants’ responses readily revealed the complex emotions related
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to ASD’s impact on their child or sibling and the impact of their child or sibling on their many
facets of life. Ranging from nine minutes to an hour and fifteen minutes, the interviews became
focused conversations enhanced due to common knowledge about the surrounding area and
school district. Interviews were arranged via email and conducted in a setting of the participant’s
choice, either in the participant’s home or a local coffeeshop. Each interview was audiotaped,
transcribed, and coded by hand and through NVivo software.
The third research method was the presentation of the participants’ favorite picture of the
child with ASD. Asked only of parents, this measure created a comfortable environment for the
parent and invited them to share in a moment of pride. Written into the interview outline and
therefore conducted during the interview, I asked “can you show me one of your favorite pictures
of [child’s name]? This measure was transcribed and coded in the interviews.
Data Analysis
Questionnaire results were analyzed using Google Form charts and graphs. Percentages
were calculated and write-in answers were aggregated. Questions were organized into the
structure of the five different effects, intellectual, instrumental, interpersonal, emotional, and
existential, as described by Seligman and Darling (2007). I deductively analyzed the themes of
the most commonly answered responses for each category as well as grouped the lesser answered
responses into a less prevalent themes group. Using insights from the interaction between highly
recorded answers and less recorded answers, I deducted the significant attributes.
After transcribing the interviews verbatim, I open-coded the transcriptions using
inductive coding techniques. I coded printed transcriptions by hand then wrote each code on a
large paper (Appendix C). I then drew connections between codes and organized the codes into
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themes. By surmising meaningful themes from stories, examples, and responses, I was able to
draw connections between different parents and siblings to find thematic connections common
throughout the interviews. Finding that the responses of the interviews fit less clearly into the
categories of Seligman and Darling (2007), I created a new structure to present the results.
The transcriptions of the picture presentation or description were open-coded similarly to
the interviews and themes were created from picture codes exclusively. These themes were
contrasted to those from the interviews to discover if the themes were unique or corroborated the
themes already presented throughout the interviews. I triangulated the findings of each set of
data to corroborate and give fuller understandings and description to the themes identified.
Results
Participants shared their experiences, thoughts, and feelings about how having a child or
sibling with ASD impacts their life and the lives of those around them for the better. Parents and
siblings expressed positives that were organized into three categories: (a) identity-centered
positives, (b) growth-centered positives, and (c) environment-centered positives.
Identity-Centered Positives
To identify what positive traits in their child or sibling with ASD family members
attributed to ASD, I created questionnaire item options such as “my child with ASD cheers me
up” or interview questions like “what would you miss about your child if he or she did not have
ASD.” The answers revealed what parents enjoyed about their child and the traits that parents
believed would either be lessened or lost without the ASD diagnosis. These identity-centered
positives reflect on both who the child or sibling is, as well as how the parent or sibling perceives
them. All but one participant described ASD as an integrated part of who their child or sibling is
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rather than something external or as something that happened to them. Some even stated that
their “child and ASD are one and the same.” The themes of enjoying humor and valuing a
different perspective were identified through the triangulation of the data.
Humor. One of the most prevalent themes throughout every interview was the increased
amount of humor added to a participant’s life due to their child or sibling with ASD. Nine of the
twelve interview participants explicitly stated that their child or sibling’s humor was something
that they cherished or would miss if the ASD was taken away. Questionnaire responses stating
“my child with ASD is fun to be around” received six (50%) responses; three participants (25%)
expressed that their child cheers them up and another two (16.7%) that their child causes
unexpected pleasures in their life. One mother, Sophia, told a story of failed deceptiveness that
left us both laughing aloud in a local Stabucks. She explained that her son, DeShane, after being
told to resist flapping his arms on the first day of high school continued this behavior under the
excuse that a bee was following him, only to smirk when confronted about it later. One mother,
Jessica, described her son’s laugh as a contagious source of joy. Another participant, Nicole,
raved about her son’s “dry humor. . . as the narration of [her] life.” Nicole’s two neurotypical
children described similar amusement toward their brother’s humor; in the words of teenage
sister, Megan, “he will just out of nowhere say something so random and it’s just so funny.”
Nicole shared an image featuring her son’s personality in which herself, Megan, James, and
Michael were holding hands in a line on a white sand beach. In the picture Nicole, Megan, and
James were all mid-jump, while Michael stood, firmly planted on the ground, looking into the
sky with a squinted face of laughter and joy. Nicole imitated what she imagined to be in
Michael’s mind, “he’s just having so much fun realizing that everyone is going to jump and he’s
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just gonna stay there.” Laughing at the image and shaking her head, Nicole flipped the page of
the photo album and said, “and we even tried to do it several times.”
Bluntness was one of the major agents of this increased humor. All six interview
participants with a functionally verbal child or sibling used the adjective or synonym to describe
their child or sibling. Either through a laughable, smug comment or simply just “telling it like it
is,” parents and siblings expressed that they were able to enjoy the bluntness of their child or
sibling. John, a father of a nine-year-old boy with ASD, told a story of Noah’s bluntness:
One time I was doing laundry and I heard the washer slam shut and I was like “huh,
okay.” I go in and before I could even ask what had happened, Noah was eating some
goldfish [crackers] and abruptly yelled, “I threw the goldfish in the washing machine!”
and then ran off. I thought, “okay, awesome.” He went through this big phase of throwing
things in water so he’s just like that.
The descriptions of bluntness continued throughout the interviews and each was delivered with a
smile on the participant’s face.
Perspective. Another positive effect of ASD on the child or sibling with the diagnosis
was how parents and siblings perceived, valued, and were often inspired by their child or
sibling’s perspective on life. Many of the participants used the phrase “unique perspective” or
“looks at the world so differently” to describe their child or sibling with ASD. The codes of
innocence, curiosity, and authenticity were identified.
Innocence. Seven of twelve interview participants used the word or described innocence
as an attribute that positively altered their child or sibling’s perspective. For some, it meant being
more open to others, boasting affection or interest in the people or environment around them.
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Heather explained that her son with ASD was “not aware of some of the things in the world, but
it’s also good.” For others, the innocence of their child or sibling protected them from the
judgment of others or peer pressure to act irresponsibly. Alicia described her daughter with ASD
as “a sweet girl, a loving girl, she loves to hug, she loves to play.” Alicia also described how she
was able to teach life-skills to her daughter Leila, through silliness and imaginative play, despite
her chronological age. Benjamin offered baby pictures on baseball cards when asked about his
favorite pictures of his sons. With Bible verses where statistics would be and a picture of each
son no more than a year old, he shared that he loved those because “it was still a mystery as to
what future plans were for them, the innocence and purity.” Benjamin collects sports cards so the
pictures of his sons on something valuable to him communicates volumes.
Curiosity. Described in lovingly told stories of first days of school or water table
exploration, curiosity was a prevalent code, especially with fathers. Two fathers explicitly stated
curiosity as one of the things they enjoyed about their child with ASD and the other alluded to it.
Darius, the father of Leila, described a scene where at six months old, Leila stood in the doorway
creating bubbles with her mouth. “She kept opening her mouth,” he said,” just spitting.” He
explained that he has this image frozen in his mind because it was the first time he recognized
that she was curiously thinking. Jessica, when asked about her favorite picture of Hunter, swiped
through her phone to find a specific image. When she turned her phone around, I saw an eight-
year-old Hunter standing atop a stool to reach the kitchen counter. He was draped in a large,
green apron with both hands in a bowl of dough, caught in the middle of a laugh. Jessica shared
this picture as her favorite because despite often playing alone, he put everything down to ask
“can I wear your apron?” and join her in the kitchen.
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Authenticity. While similar to bluntness, observed authenticity reflects the perspective of
the child or sibling rather than their external comments. Comments like “he doesn’t let things
cloud his judgment or worry about things that people naturally do,” and “he is very much himself
all the time” communicate that participants perceive their child or sibling with ASD as generally
confident and authentic.
Authenticity of spirit seen as bluntness in some individuals is understood as propensity
toward extreme emotion in others. John described Noah as “giggly and goofy,” explaining that
he “gets a big kick out of small things.” A similar sentiment was described by Benjamin, the
father of three minimally verbal boys with ASD. He and his neurotypical daughter, Camila,
shared that his sons respond to life with a joy for simple things. Sara, the mother to these three
boys and Camila, stated that ASD gave her sons freedom to experience “a higher level of
happiness and joy” than other boys their age. Heather, when asked about her favorite picture of
her son Jason described this scene:
When we lived in Florida, there was an abandoned train yard where the trains don’t run
anymore and my husband took him there one day. Jason got to climb up on one of the
train engines and he was just so excited to actually be on the train. In the picture, he’s
standing on the train engine holding the cars that are right there.
She described this picture as one of pure joy because trains are his obsession and his personality
shines through when he is happy.
Growth-Centered Positives
Parents and siblings experience growth in themselves that they also deem as positive.
When asked questions like, “what are some of the positive effects your child with ASD has had
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on you as an individual,” or “what do you like about having a sibling like [child’s name],” the
participants reflected on their own personal growth within the context of ASD’s influence on
their life. The identified themes were increased patience and changed perspective.
Patience. One of the most commonly reported effects of having a child with a disability
with ASD, increased patience was discussed in all but three of the interviews and in ten (83 %)
of the questionnaire responses as well as one write-in response. Participants described how their
patience had exponentially grown because of their child or sibling with ASD. From stories about
trying to travel to daily practices of waiting for their child to attend, growth in patience seemed
to be important for both the quality of life of the participant and for the individual with ASD.
Megan described her increased patience in the form of having to “elaborate when [she is] telling
him to clean the kitchen,” showing how the increased patience of a teenage sister is different
from that of a parent. Alicia also chronicled a story of patience:
For the longest time, therapists would come in and out of the house asking “what would
you like us to target.” I would always say, “For her to call me mom.” It was my number
one, the first thing I wanted to see. I wish that her first word had been “mom,” I tried for
three years, saying “try, try mom,” but she would not say anything. So, her first word was
“bubble.” That’s fine, but I didn’t give up. Like, I want mom, mom. And yet, she never
said “mom.” It just kept going, she would say one or two words, but not “mom.” I came
home from work one day, opened the doors. I say, “Hi Leila,” I hear “Hi Mommy.” I
went “huh?” I threw everything down and turned around in unbelief. Leila laughs,
“Mommeyyyyy.” I gasped. I will never forget that.
Alicia said that her daughter always does things on her own time, never when one expects it nor
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when they think she is capable of it.
Perspective. Parents and siblings perceive the perspective of their child or sibling with
ASD as distinctly different from their own and the rest of the world. John described that in trying
to embrace his son’s perspective, he has found freedom to appreciate things that matter more. He
said, “I think the world would be a lot better in a lot of ways if [people] saw things the way he
sees things.” Having a child or sibling with ASD changes one’s perspective on the world through
increased understanding, flexibility, and a unique sense of pride.
Understanding. The first aspect of understanding communicated was that having a child
or sibling with ASD changes the way one views the world around them. One highly recorded
questionnaire response was “my child with ASD makes me grateful for each day” with eight
(66.7%) responses. Nicole and Megan explained that because of Michael’s quirks, they learned
more about their own shortcomings and high-strung tendencies. Nine interview participants
shared that they had an increased understanding and awareness of the world around them. In the
questionnaire, every participant (100%) reported that because of their child with ASD, they had
an increased awareness of people with disabilities. Increased knowledge about ASD was also
reported by ten participants (83.3%). One questionnaire participant wrote in an answer of “I treat
situations differently due to my awareness and insights of ASD.” Comments of increased
empathy were common in the interviews. Darius explained that as a doctor, he had become more
understanding when people canceled appointments. “I don’t know who that kid is [or] how they
react in the community,” he said. Jessica shared that her son, Hunter, has taught her to be more
accepting of others; her son does not judge people and she desires to resemble him in that way.
James, the ten-year-old brother of Michael, said that because his brother thinks differently he
ASD and Positive Familial Effects
22
considers it “fun to see how [others] think because they always think differently.” Six (50%)
questionnaire participants expressed that their other children were more aware of others’ needs
and another six (50%) that their family was more aware of the importance of planning.
Flexibility. Increased flexibility was expressed by nine of the twelve interview
participants. Described by Alicia as “in Walmart and acting a fool in front of mangoes and
oranges” or by Heather as “changing expectations,” flexibility is both a physical and mental
experience for families with children with ASD. Both Nicole and John used the phrase “I don’t
sweat the small stuff” to describe how their perspective has changed on what is worth the energy
of worry. Sara also described this phenomenon of increased flexibility, sharing that “we don’t
have that much control, we just don’t; we can plan, we can prep, and it still may not work out
and we have to be okay with that and not let it ruin our whole day.”
Pride. The questionnaire response of “my child with ASD is a source of my pride”
received six participant (50%) affirmations, but illustrations of pride were scattered in many
interviews and picture presentations from both parents and siblings. Two participants showed
pictures that elicited a sense of pride in themselves and in their children. Sophia showed me a
picture of her son in the parking lot of his high school smiling from ear to ear. He had won the
student of the year award for physical education class. Sophia explained that he was always
prepared, changed quickly, and did as he was told, as per his adherence to routine. She smiled at
the picture saying, “he was happy because he felt like he accomplished something in a world
where he always failed.” Proud of her son’s accomplishment and even happier for his pride in
himself, Sophia chose this as her favorite picture. When asked about her favorite pictures of her
sons, Sara brought me to one wall in her living room where school pictures were hung front and
ASD and Positive Familial Effects
23
center. She felt that it was important to make the “statement that this is a part of who we are, this
is kind of a part of what makes up our family.”
Pride in how their child or sibling affected others was another aspect. “He brings so much
joy to people” Jessica shared. Similarly, Darius boasted that “people gravitate toward [Leila]”
accrediting it, in part, to ASD. From stories of neighborhood friends protecting DeShane from a
bee with their toy baseball bats to Hunter walking across a stage to a standing, sensory-friendly
crowd, clearly participants felt that ASD gave the individuals a unique social power.
Participants also demonstrated levels of pride regarding their feelings of responsibility to
advocate for individuals with disabilities, whether their own or not. Camila grinned as she shared
the opportunity to decorate her school locker and talk about ASD on World Autism Awareness
Day. Megan shared her love for the program in her school where she would visit the special
education rooms for one period to build relationships with students. Two mothers labeled
themselves as “activists” and most parental interviews included at least one anecdote of having
to fight for their child’s success.
Environment-Centered Positives
The positive impacts of having a child or sibling with ASD that were neither directed at
the child nor at the participant were directed toward the environment of daily life. Questions like
“what are some of the positive effects your child with ASD has had on your family” or “how is
your family better because [child’s name] is in it” were asked to explore how participants viewed
their child or sibling’s impact on the family. Throughout the process, other external factors
unrelated to family dynamics revealed themselves. Both the effect on family and increased
opportunity were identified as themes that impact the environment in which the participants live.
ASD and Positive Familial Effects
24
Effect on family. The family dynamic is remarkably influential on the quality of life of
every member (Seligman & Darling, 2007). Across methods of data collection, family dynamics
were discussed and each participant shared valuable insights related to closeness and resilience.
Closeness. Increased emotional closeness between family members was reported by four
(33.3%) questionnaire participants. “My family is complete” elicited three (25%) responses and
“my family is helped” received two (16.7%). In the interview and picture results though, nine
participants expressed feelings of increased familial closeness due to their child or sibling with
ASD. Sara identified her sons as the reason for their closeness, “because we literally have to rely
on each other to go anywhere because they each have to have supervision.” Sophia shared that
her extended family had “accommodated for him.” Because of her Latino heritage, she was
surprised they accepted him so readily due to cultural expectations of machismo. Married
participants shared that having a child with ASD strengthened their marriage. For example,
Heather said that they had “to draw closer together because there’s been several times where
there’s just people who don’t understand.” Some participants were closer because of the need to
communicate and rely on each other to survive. Epitomizing this familial closeness, Darius’
favorite image was about his daughter needing him. He described the context of traffic and being
late to pick Leila up from daycare, “she stood right there at the door, the glass door, and she was
just looking, they were going to turn off the light and she was just looking to see if I’m coming
to pick her up.” When she saw him, she threw up her arms, ran, and jumped into his arms.
Similarly, Daruis’ wife, Alicia, also showed a picture representing the closeness between Leila
and her father. She chronicled the story of Leila’s first Halloween. Adorned in a princess gown
and tiara, she held her father’s pinkie who “dressed as a doctor that day.” Leila was “looking up
ASD and Positive Familial Effects
25
at Daddy, that was so incredible,” Alicia shared.
Resilience. The family’s ability to adapt and thrive in atypical situations is described as
resilience. This code was expressed in the questionnaire though eleven (91.7%) responses of “my
family is more understanding of unique situations,” and was discussed in interviews and picture
presentations primarily in descriptions of the small successes that families with children with
ASD experience that other families do not. Nicole explained:
I love all my kids, they’re different, the standard parent thing we all love our kids
differently but we love them the same, you know. But Megan doing good on a test and
Michael doing good on a test, her making a friend and him making a friend are
completely different. I’m more invested and prouder of him in ways that other parents
just never get the opportunity to be proud in those ways. And the things he overcomes, as
a parent, I can’t imagine not getting those little victories. I wouldn’t know I wasn’t totally
fulfilled, raising all these typical kids, but it’s a lot more than just overwhelming. There’s
so many different emotions and experiences and challenges and growth opportunities that
come to you when you have a kid on the spectrum and I wish it was looked at more as an
opportunity or a challenge.
A similar sentiment was described by John, Sara, Darius, and Alicia; the little victories “are
worth the fight.”
Increased opportunity. The codes of career opportunity and opportunity to make
meaning were identified by participants as part of their purpose in having a child with ASD.
Career. One questionnaire participant (9.1%) cited an improved work life as a positive
aspect of having a child with ASD, whereas four interview participants indicated that they felt
ASD and Positive Familial Effects
26
having a child with ASD was advantageous to their career. As a pharmacist, Alicia stated that her
daughter’s experience prompted her to taste every medication she distributes in an effort to
properly mix flavoring. Sophia, a diagnostician, and Heather, a special educator, both credited
their child with ASD with the advancement of their careers. They learned more about the field
and could better relate to other parents. Sara also uses skills from her social work career to
advocate for her sons.
Meaning-making. Three participants described their experience of meaning-making.
Sophia described a period of guilt in which she blamed herself for her son’s diagnosis, but
eventually decided that “[she] got a blessing, God chose [her].” Jessica explained that she
believes Hunter has a unique relationship with God and said, “I have this angel that the Lord
trusted me enough to take care of.” Faith in God was confirmed for five (41.7%) questionnaire
participants and frequent attendance of religious services was reported by one (8.3%). In a
scenario of talking to another family with a child with ASD, Nicole asserted, “God has presented
you with this unique challenge for your family like how special are you guys!” The questionnaire
response of “I know there is purpose in life” received seven (58.3%) participant responses.
Discussion
Using multiple methods for data collection allowed for a deeper understanding of the
positive aspects of life with an individual with ASD. The use of a closed response questionnaire,
open-ended individual interview, and a stimulus aided prompt (i.e., a photograph) demonstrated
that the latter two yield more diverse answers than the first. This finding demonstrates that when
given an open-ended avenue for families to speak about their experiences, the result and
therefore meaning is personally contextualized. The triangulation of the three forms of data
ASD and Positive Familial Effects
27
collected revealed both commonalities and differences. For example, the questionnaire results
showed limited response to increases in interpersonal benefits, whereas the interview results
showed that participants were encouraged by the influence of their child on their social life,
particularly in reference to advocacy. Commonalities between the interviews and picture
presentation were frequent and led to the majority of the codes and subsequent themes.
Throughout all methods though, participants identified and communicated that ASD had not
ruined their life, only changed it. While no researchers assert that children with ASD ruin lives,
this conclusion can be assumed when data shows increased stress across all domains of life
(Simson, 2013). All participants shared at least one specific way that their child or sibling with
ASD had positively influenced them, their environment, or the individual.
Identity-centered positives were some of the clearest positive aspects of life identified by
parents and siblings throughout all methods. Contrary to the research by Hines et al. (2011), all
but one participant described their child’s identity as integrated with their ASD. Interestingly, the
participant who identified their child as separated from ASD later listed her daughter’s diagnosed
speech delay as part of her identity. This finding seems to indicate that identity and language are
more closely related than identity and behavior. This conclusion is supported by the finding that
most of the positive effects identified by families were significantly impacted by the child’s
verbal ability. Codes like bluntness were exclusive to families with functionally verbal children,
but the themes of humor and perspective were universal. The emotional process of understanding
one’s child or sibling’s identity was expressed by many participants as a generally positive
experience, at least in the present. While I asked families about their diagnosis story, I did not
specifically ask about the emotional state surrounding the diagnosis and cannot therefore
ASD and Positive Familial Effects
28
contribute to Oprea and Stan’s (2012) conclusions about the intellectual trauma of diagnosis. The
aftermath of the diagnosis though, as Green (2007) stated and my data corroborates, results in
families’ adjustment and acceptance. This acceptance of the individual with ASD can become
valued, as shown through the emphasis on the qualities of humor and perspective in family
members with ASD. The fact that family members would share that ASD is crucial to positive
aspects of the identity of their child or sibling is significant because it shows that family
members surpass the original trauma, even acceptance, and can express a level of desirability.
Seligman and Darling (2007) stated “what affects one [family] member affects all
members” (p.17). They explain that in a sense, when one family member is Deaf, all members
are Deaf. This concept can be extended to ASD in that, when one family member has ASD, the
entire family acts out of awareness and consideration of ASD (Seligman & Darling, 2007).
Families in past literature seem to jump at the opportunity to share their care-giving burdens
(Estes et al., 2009; Vasilopoulou & Nisbet, 2016; Wayment & Brookshire, 2017; Myers et al.,
2009; Dardas & Ahmad, 2014; Green, 2007). Families in the current study though, while asked
about the positives, were given an open-ended response and could have shared the burdens, but
rarely did. Participants expressed personal growth through increased patience and a new
perspective on life. These same traits were identified by parents as the ways their neurotypical
children had been affected. Increased patience is one of the positives found by Myers et al.
(2009), but is expanded upon in my findings. Pride in one’s child or sibling with ASD appears to
be a new theme in the research of ASD, though it has been discussed in relation to disability as a
whole (Green, 2007). Through Seligman and Darling’s (2007) systems approach to childhood
disability, when parents and siblings treasure the growth of their family member with ASD, the
ASD and Positive Familial Effects
29
value extends to self-growth. That is, when the entire family has ASD, any amount of growth or
any “little victory,” as Nicole coined, is celebrated.
The environment-centered positives found in this study are consistent with the concept
that families are complex and interdependent systems (Seligman & Darling, 2007). Increased
family closeness, even in families with separated parents, was a common response. Similar to
past research, a child or sibling with ASD has the potential to be beneficial for a family (Hastings
& Taunt, 2002; Myers et al., 2009), or potential to be detrimental (Schneider, 2017). My finding
that some individuals express increased pleasure in their career is reflective of Hastings and
Taunt’s (2002) research.
Limitations and Recommendations for Future Research
While in-depth understanding of the experiences of parents and siblings of children with
ASD was gained, transferability of findings to others is limited due to participants originating
from one school district in North Texas. Despite its narrow scope, this research prompts the
conversation for further investigation into the positive aspects of ASD on children and their
families. Aligned with the neurodiversity movement that bolsters the thought that individuals
with ASD have unique qualities that are an asset to them and their environment, positive aspects
of ASD should continue to be researched. It is also worth noting that further research into the
discrepancy between the Hines et al. (2011) research and my findings on parental differentiation
between their child’s identity and their child’s ASD diagnosis, especially within the context of
comorbid language delay, would be advantageous to the field. My findings alluded to the
concept that parents of a child with ASD and a diagnosed speech delay may be more likely to
separate their child from ASD and integrate the speech delay into their child’s perceived identity,
ASD and Positive Familial Effects
30
as opposed to parents of children without comorbidities identifying ASD as part of who their
child is. My study can encourage future research, but also encouraged the participants, which
could be argued is the most important result of the study. Every parent thanked me for letting
them brag about their child, for helping to open other’s eyes to the fact that ASD “is not a death
sentence,” and for beginning the conversation about the strengths of their children. By asking
alone, participants were reassured and inspired to see the positive aspects of ASD, creating a
positive environment. While it cannot be quantified through this study, research has shown that
positive parental perception leads to better outcomes (Dardas & Ahmad, 2014). If asking such
questions is a catalyst to increased familial satisfaction, then that’s a valuable finding.
Conclusion
Parents and siblings of individuals with ASD provided in-depth emotional analysis and
anecdotes regarding their child or sibling with ASD. I identified that parents and siblings of
individuals with ASD attribute positive traits in their child or sibling’s identity, their own
personal growth, and positive environmental changes to having a family member with ASD.
From the thematic analysis of all measures, it can be stated that for these seven families, ASD
has positive effects that parents and siblings are willing and excited to share.
For professionals, these results are important for interventions and the initial diagnostic
process. If professionals are aware of the positives associated with having a child or sibling with
ASD, they can share that information with families. Families can also be encouraged by these
findings as they search for their own stories in the anecdotes and quotes expressed by the
participants. As the pursuit of optimism is depicted, the continuation of this pursuit in other
families can be fostered. Arguably most importantly though, this research has implications for
ASD and Positive Familial Effects
31
individuals with ASD. Research that seeks to emphasize the qualities that individuals with ASD
boast can encourage neurodiverse populations to confidently share their talents with the world.
Affirming that ASD is a uniquely challenging and rewarding circumstance, these results can
empower the ASD community towards self-advocacy.
ASD and Positive Familial Effects
32
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ASD and Positive Familial Effects
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Appendix A
Questionnaire
The
Liberty
University
Institutional
Review
Board
has
approved
this
document
for
use
from
5/31/2019
to
5/30/2020
Protocol
#
3778,053119
decide
to
participate,
you
are
free to
not
answer
any
question
or
withdraw
at
any
time
without
affecting
those
relationships.
How
to
Withdraw
from
the
Study:
If
you
choose
to
withdraw from
the
study,
please
exit
the
survey
and
close
your
internet
browser.
Your
responses
will
not
be
recorded
or
included
in
the
study.
Contacts
and
Questions:
The
researcher
conducting
this
study
is
Genevieve
Weaver.
You may
ask
any
questions
you
have
now.
If
you
have
questions
later,
you
are
encouraged
to
contact
her
at
817-675-3668
or
You
may
also
contact
the
researcher's
faculty
advisor,
Dr.
Lucinda
Spaulding,
at
Isspaulding@liberty,edu.
If
you
have
any
questions
or
concems
regarding
this
study
and
would
like
to
talk
to
someone
other
than
the
researcher,
you
are
encouraged
to
contact
the
Institutional
Review
Board,
1971
University
Blvd.,
Green
Hall
Ste.
2845,
Lynchburg,
VA
24515
or
email
at
Please
notify
the
researcher
if
you
would
like
a copy
of
this
information
for
your
records.
Statement
of
Consent:
I
have
read
and
understood
the
above
information.
I
have
asked
questions
and
have
received
answers.
I
consent
to
participate
in
the
study.
1.
[have
read
the
attached
consent
form.
*
Mark
only
one
oval.
(_)
Yes
C_)
No
Stop
filling
out
this
form.
Demographic
Information
ASD and Positive Familial Effects
38
2.
Please
specify
your
ethnicity.
|
American
Indian
or
Alaskan
Native
Asian
Black
or
African
American
Native
Hawaiian
or
Other
Pacific
Islander
|
White
Unknown
|
Other
3.
lam
the
to
a
child
with
autism
spectrum
disorder.
Mother
Father
Parental
Guardian
Positive
Impacts
of
ASD
Within
the
following
categories,
please
check
all
options
that
you
feel
best
describe
your
perspective
of
the
positive
impacts
of
ASD.
4.
In
what
ways
does
your
child
with
ASD
affect
your
immediate
family?
Because
of
my
child
with
ASD...
[
|
my
family
is
emotionally
closer.
|
my
family
is
more
understanding
of
unique
situations.
my
other
children
are
more
aware
of
others'
needs.
|
my
family
is
aware
of
the
importance
of
planning.
my
family
is
complete.
my
family
is
helped.
Other:
ASD and Positive Familial Effects
39
5.
In
what
ways
does
your
child
with
ASD
affect
your
social
life?
Because
of
my
child
with
ASD...
Check
all
that
apply.
|_|
Ihave
closer
friends.
|
|
have
a
larger
group
of
friends.
|
|
have
a
newfound
interest
in
social
activities.
|
|
feel
more
connected
to
the
world.
L]
|
have
common
ground
with
other
parents.
L]
Other:
6.
In
what
ways
does
your
child
with
ASD
affect
your
perspective
on
life?
Because
of
my
child
with
ASD...
Check
all
that
apply.
]
|
know
that
there
is
purpose
in
life.
C]
|
am
confirmed
in
my
faith
in
God.
C]
|
more
frequently
attend
religious
services.
C]
|
am
more
aware
of
the
future
of
humanity.
|_|
Other:
7.
In
what
ways
does
your
child
with
ASD
affect
your
daily
practicality?
Because
of
my
child
with
ASD...
Check
all
that apply.
C]
|
have
better
structure
in my
life.
]
|
am
more
responsible
with
money.
C]
|
am
more
responsible
with
time.
|
|
am
more
productive.
|
my
work
life/career
is
improved.
|__|
my
home
is
cleaner
or
more
organized.
|_|
Other:
ASD and Positive Familial Effects
40
8.
In
what
ways
does
your
child
with
ASD
affect
your
learning?
Because
of
my
child
with
ASD...
|
|
have
learned
about
ASD.
|
have
learned
about
my
own
biomedical
or
sensory
needs.
|
have
learned
how
to
be
a
better
parent.
|
have
an
increased
awareness
of
people
with
disabilities.
|
I
can
handle
intellectual
challenges
better.
‘|
Other:
9.
In
what
ways
does
your
child
with
ASD
affect
your
emotional
wellbeing?
My
child
with
ASD...
causes
many
unexpected
pleasures
in
my
life.
makes
me
grateful
for
each
day.
|
is
a
source
of
my
pride.
cheers
me
up.
is
fun
to
be
around.
|
Other:
Please
consider
participating
in
an
interview.
The
interview
extension
of
this
questionnaire
allows
the
researcher
to
see
a
fuller
picture
of
the nature
of
the
positive
impacts
of
ASD
on
a
family.
The
interview
process
would
consist
of
questions
for
both
parents
and
siblings,
if
applicable,
and
would
take
place
at
a
location
of
your
choice.
The
interview
would
take
about
30
minutes
per
parent
and
15
minutes
per
sibling.
To
maintain
the
anonymity
of
your
questionnaire
responses,
your
contact
information
will
be
separated
from your
questionnaire
responses
through
the
use
of
an
additional
form.
The
data
will
be
provided
to
the
researcher
in
separate
forms.
ASD and Positive Familial Effects
41
10.
If
you
are
interested,
please
follow
the
link
to
set
up an
interview
(https://forms.gle/UQorSGrpsPzyQnzU7
)
Mark
only
one
oval.
~)
Iwill
follow
the
link
(__)
No
thanks
Powered
by
B
Google
Forms
ASD and Positive Familial Effects
42
ASD and Positive Familial Effects
43
Appendix B
Interview Outline
Interview Outline
Note: Researcher will replace blanks in the question with the name of the individual’s child with
ASD.
Parent Interview:
Research Question
Interview Question
What general positive impacts do parents of
individuals with ASD identify with their
affected child?
Can you show me one of your favorite
pictures of _____? Why is this a favorite
picture?
Can you tell me one of your favorite stories
regarding your child with ASD? Why is it a
favorite?
What positive impacts on personal life do
parents identify with having a child with
ASD?
What are some of the positive effects your
child with ASD has had on you as an
individual?
How would you describe your relationship
with ASD?
What positive impacts on family life do
parents identify with having a child with
ASD?
What are some of the positive effects your
child with ASD has had on your family?
How has ____ positively affected each family
member?
What positive impacts on their child’s life do
parents attribute to ASD?
What are some of the positive effects ASD
has had on your child?
What traits would you miss about _____ if
he/she didn’t have autism?
Sibling Interview:
Research Question
Interview Question
What general positive impacts do siblings of
individuals with ASD identify with their
affected sibling?
Can you tell me one of your favorite stories
about _____? Why is it a favorite?
- If child struggles to self-generate a
story, the researcher will give the
prompt of “Can you tell me a story
about a time ____ helped you?”
What positive impacts on personal life do
siblings identify with having a sibling with
ASD?
What are some things that you like doing with
____?
What do you like about having a sibling like
____?
What positive impacts on family life do
siblings identify with having a sibling with
ASD?
How is your family better because ____ is in
it?
What positive impacts on their sibling with
ASD do siblings attribute to ASD?
What would you miss about _____ if he/she
didn’t have autism?
ASD and Positive Familial Effects
44
Appendix C
Open-Coding
