Running head: ASD & THE TRANSITION TO ADULTHOOD 1
Exploring the Adulthood Transition through the Eyes of Adults Living with Autism
Spectrum Disorder: A Phenomenological Study of Their Expectations, Perceptions,
Experiences, and Goals regarding Adulthood
Matthew Noakes
A Senior Thesis submitted in partial fulfillment
of the requirements for graduation
in the Honors Program
Liberty University
Spring 2019
ASD & THE TRANSITION TO ADULTHOOD 2
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.
______________________________
Elizabeth Sites, Ph.D.
Thesis Chair
______________________________
Jichan Kim, Ph.D.
Committee Member
______________________________
Mark Harris, Ph.D.
Committee Member
______________________________
Marilyn Gadomski, Ph.D.
Honors Assistant Director
______________________________
Date
ASD & THE TRANSITION TO ADULTHOOD 3
Abstract
Autism spectrum disorder (ASD) is a prevalent developmental disorder that makes daily,
independent living difficult for many people around the world. Depending on the severity
of ASD symptoms, individuals living with ASD rely on various supports to develop
everyday skills. However, many of these supports fade away as these individuals
transition out of high school into adulthood where they are introduced to an entirely new
set of social systems including postsecondary institutions, workplace environments,
independent/codependent living arrangements, and mature social relationships. Four
emerging adults with ASD were interviewed to gather their expectations, perceptions,
experiences, and goals regarding these different domains of adulthood. The participants
responded with a wide range of thoughts and emotions, some of which reflect the
findings of past research and some of which demonstrate new ways to understand how
people with ASD transition to adulthood.
Keywords: autism spectrum disorder, ASD, adulthood, transition
ASD & THE TRANSITION TO ADULTHOOD 4
Exploring the Adulthood Transition through the Eyes of Adults Living with Autism
Spectrum Disorder: A Phenomenological Study of Their Expectations, Perceptions,
Experiences, and Goals regarding Adulthood
The Diagnostic and Statistical Manual of Mental Disorders (American
Psychiatric Association, 2013) defines autism spectrum disorder (ASD) as a
neurodevelopmental disorder that causes significant impairments and limitations for
everyday living. ASD symptoms are present from early childhood, and they typically
persist throughout adulthood; however, affected individuals can learn to manage their
symptoms and live a healthy, productive life. Social interaction and communication
deficits constitute a core diagnostic criterion for ASD. Common examples of these
deficits include a lack of responsiveness, minimal social reciprocity, reduced interest in
others, and difficulty taking on different perspectives. Individuals living with ASD have
more difficulty speaking and understanding speech than those without ASD, and their
communication generally reflects the disconnection between their experiences and their
emotions. Their thought patterns, behaviors, interests, and activities tend to be rigid and
repetitive to such an extent that they are aversive to change. ASD is classified as a
spectrum disorder because symptom manifestations vary greatly depending on the
severity of the autistic condition, combined with the individual’s age, developmental
level, and environment.
People with ASD often experience one or more comorbid conditions such as
anxiety, depression, intellectual disability, physical disorders, and
hypersensitivity/hyposensitivity to various stimuli. Both children and adults with high-
functioning ASD were found to have higher rates of anxiety than those with low-
ASD & THE TRANSITION TO ADULTHOOD 5
functioning ASD, an intellectual disability, or no neurodevelopmental disability
altogether (e.g. Gotham, Brunwasser, & Lord, 2015; Lugnegård, Hallerbäck, & Gillberg,
2011; White, Oswald, Ollendick, & Scahill, 2009). The impact of anxiety on one’s life
can greatly vary, but common themes include difficulty functioning at work, reduced
sense of being able to live a meaningful life, and reduced enjoyment from, or avoidance
of, pleasurable activities (Robertson et al., 2018). In addition, patterns of atypical sensory
processing commonly found among people with ASD further disrupts their ability to
manage their environment, thus producing anxious feelings of uncertainty. Sensory
processing plays a significant role in attention, learning, emotional regulation, and social
functioning (Chang et al., 2014), so sensory processing dysfunction may produce
negative, pervasive effects in these areas of functioning. Tactile sensitivity, for example,
can make personal hygiene and grooming activities much more difficult for people with
ASD to tolerate (Tomchek & Dunn, 2007). The prevalence of ASD and the current state
of transitional support for emerging adults with ASD provide context for some of the
common outcomes found throughout literature for people with ASD as they transition to
adulthood.
Prevalence of ASD
The prevalence of ASD appears to be increasing around the world. Matson and
Kozlowski (2011) reviewed early studies of autism prevalence in the 1960s which
reported about 4–5 diagnoses per 10,000 children. Since then, the means by which
researchers measure the prevalence of ASD have become more precise, and the estimated
rates have been increasing substantially. Baio et al. (2018) reviewed the findings of the
Autism and Developmental Disabilities Monitoring (ADDM) Network which consists of
ASD & THE TRANSITION TO ADULTHOOD 6
surveillance programs funded by the Centers for Disease Control and Prevention that
estimate the number of people living with ASD across the United States. The ADDM’s
most current prevalence estimate is 16.8 ASD diagnoses per 1,000 eight-year-olds in the
U.S.; therefore, 1 in 59 U.S. children is diagnosed with ASD which demonstrates an
increase of 150% in cases diagnosed since the launch of the ADDM in 2000. The
prevalence of ASD diagnoses, however, varies based on geographical area, sex, race, and
ethnicity. One of the most notable distinctions is the significantly higher prevalence rate
among boys, who are 4 times more likely to be identified with ASD than girls. Caucasian
children were found to have higher prevalence rates of ASD compared to African-
American or Hispanic children. Forty-four percent of children with ASD scored in the
range of average to above average IQ (>85), 31% scored in a range less than 70 and were
classified as intellectually disabled, and the remaining 25% scored in the borderline range
between 71 and 85.
Several explanations for the increase in the prevalence of ASD include the
expanding diagnostic and assessment criteria of ASD, inaccurate diagnoses, variations
among research methodologies, environmental components, cultural factors, and
society’s general increase of ASD awareness. Regardless of what caused this increase,
there remains a large population that has been diagnosed with ASD who require
individualized training and support to lead successful lives throughout adulthood (Matson
& Kozlowski, 2011).
Transitional Supports and Services for Adults with ASD
Despite the often-overwhelming symptoms that accompany people living with
ASD, Wehman et al. (2014) stressed that this population has substantial untapped
ASD & THE TRANSITION TO ADULTHOOD 7
potential, and the support services that are available to them should reflect this notion.
However, once individuals exit the public education system, the level of support provided
to them decreases dramatically in the domains of employment, education, social
development, and independent living. Both caregivers and adults with ASD described the
current state of transitional supports as frustrating and underwhelming, resulting in a
difficult, awkward transition to adulthood (e.g. Anderson, Stephenson, & Carter, 2017;
Cheak-Zamora, Teti, & First, 2015). Parents also expressed a concern that supports were
more difficult to obtain for higher-functioning individuals with ASD because their
symptoms were less intrusive (e.g. Anderson et al., 2017; Wehman et al., 2014).
Furthermore, adults with ASD who continue to live with their parents may be at risk of
losing their strongest support to old age, and there is a concern that older parents are not
fit to properly support their children (Howlin, Moss, Savage, & Rutter, 2013).
Zeedyk, Tipton, and Blacher (2016) reviewed 12 studies about the pathway to
college for high-functioning youth with ASD and the practical, educational, and social
supports that have been established. They concluded that these supports are lacking and
the research on their success is lacking as well. Jackson, Hart, Brown, and Volkmar
(2018) found that college students with ASD use about 2–3 different support services that
are designed to facilitate learning in school, but 30% of their sample expressed a desire
for their institution to provide more and better support services. According to Anderson,
McDonald, Edsall, Smith, and Taylor (2016), high school students would appreciate
transitional supports that focus on daily living skills. Moreover, educators should prepare
these individuals for the uncertainties of adulthood and the fact that the transition can be
a long process.
ASD & THE TRANSITION TO ADULTHOOD 8
Transition planning is a process by which students demonstrate self-determination
and control in their lives in meaningful ways by making choices about their future,
reviewing these choices, experiencing the consequences, and making new choices. Part of
this process involves developing and committing to goals regarding post high school
outcomes, including postsecondary school and vocation (Agran & Hughes, 2008). Wei,
Wagner, Hudson, Yu, and Javitz (2016) utilized the NLTS2 and found that both
participation in transition planning meetings and goal-setting were associated with higher
levels of postsecondary enrollment among youth with ASD. However, Wagner, Newman,
Cameto, Levine, and Marder (2007) discovered that less than a quarter of their sample of
youth with ASD included higher education goals in their transition plans even though
84.4% expected to attend postsecondary school.
Quality of Life for Adults with ASD
Quality of life, as defined by the World Health Organization (n.d.), refers to
people’s “perception of their position in life in the context of the culture and value
systems in which they live and in relation to their goals, expectations, standards and
concerns” (para. 2). Studies show that both children and adolescents living with ASD
have a lower quality of life compared to neurotypical children and adolescents (Kamp-
Becker et al., 2011; Potvin, Snider, Prelock, Wood-Dauphinee, & Kehayia, 2015). Eaves
and Ho (2008) conducted a study in which parents reported on the quality of life for their
young adults with ASD. Parents collectively expressed a wealth of unmet needs for their
adult children in the domains of social programs/social outlets, friends, work, and
education. Additionally, Anderson et al. (2017) conducted a scoping review of 17
qualitative studies on the relationship between emerging adults with ASD and different
ASD & THE TRANSITION TO ADULTHOOD 9
domains of adulthood. Stakeholders described a theme of poor person-environment fit in
which there was a disconnection between the developmental needs of adults with ASD
and their environments, including the workplace, postsecondary schools, and community
service systems.
In Germany, Roy and Dillo (2018) administered a quality of life questionnaire to
32 adults with ASD (22–50 years old) to measure if their perceived quality of life differs
from their neurotypical counterparts. The researchers discovered highly significant
differences between the two groups; the ASD group exhibited a lower quality of life in
the domains of vitality, bodily pain, general health perception, physical role functioning,
emotional role functioning, social role functioning, and mental health. Reduced
functioning in some of these domains may be directly related or attributable to ASD
symptoms. For example, individuals with ASD may perceive more instances of bodily
pain due to dysfunctional processing of certain stimuli. However, perceptions of reduced
functioning in domains like physical, emotional, and social role functioning may be more
generally impacted by the perceived discrepancies among one’s expectations,
perceptions, experiences, and goals regarding adulthood.
Expectations and Perceptions of Adulthood
Holmes, Kirby, Strassberg, and Himle (2018) measured the impact of parents’
expectations of adulthood outcomes for their sons and daughters with ASD. A sample of
298 parents rated the likelihood of 25 adulthood outcomes across various domains such
as vocation, postsecondary education, independent living, citizenship, and financial
independence. Below-average IQ and more severe ASD symptoms predicted lower
expectations among parents for their youth. Also, gender differences were noted as lower
ASD & THE TRANSITION TO ADULTHOOD 10
expectations were more likely to be associated with parents of daughters. The parents’
expectations predicted their level of engagement in transition-preparation activities, such
as coordinating volunteer opportunities or providing household chores, for their emerging
adults. Other studies have found parent expectations to be significant predictors of
academic achievement (Yamamoto & Holloway, 2010) and gainful employment (Doren,
Gau, & Lindstrom, 2012). Holmes et al. (2018) suggested that when parents have higher
expectations of their youth, the parents will arrange for transitional supports that are more
designed for these desirable outcomes in adulthood.
Anderson et al. (2016) performed a thematic analysis among the expectations of
31 high school students with ASD regarding higher education, employment, friendships,
and living arrangements. Approximately 90% of their sample expected to attend more
schooling after high school. Sixty-two percent expected to work after high school, and
the remaining participants were not sure what to expect regarding employment; however,
no students expected not to work after high school. These students characterized their
ideal professions as stress-free and enjoyable, differentiating them from unspecialized,
low paying, part-time jobs. About 70% expected to maintain their current friendships or
develop new friendships after high school. There were only two individuals who did not
expect to have friends after high school. The sample’s expectations regarding living
arrangements were evenly divided into either continuing to reside with parents or leaving
the parental home to live independently or semi-independently. Participants
acknowledged that these domains are interdependent, and many believed that college was
a catalyst for success in areas of employment, independent living, and social
connectedness.
ASD & THE TRANSITION TO ADULTHOOD 11
Cheak-Zamora et al. (2015) discovered a divergence between the expectations of
young adults with ASD and their caregivers. Young adults with ASD emphasized the
value of social relationships and desired more opportunities to build friendships.
However, caregivers authorized caution as their young adults approached romantic
relationships, and caregivers were wary of society’s generally negative perceptions of
people living with ASD. Most caregivers wanted their youth to go to college, but not all
youth expressed the same desire. Youth expressed insecurities about their ability to
succeed at a college level, and some were unsure of how to negotiate their interests
considering their caregivers’ expectations. Therefore, they shared a general reluctance to
express their thoughts and fears regarding employment and adulthood to their caregivers,
especially when the caregivers’ expectations were made known. Youth aspired to obtain
interesting, high quality jobs, such as computer programming, but employers would often
underestimate the youth’s ability and delegate mundane, cleaning jobs to these
individuals.
Additionally, Anderson and colleagues (2016) described the ways in which their
participants defined adulthood. All but one participant cited individualistic criteria such
as financial independence and independent living skills as important in their definitions.
Independent household skills (e.g. laundry, washing dishes, making meals) were linked to
ideas of personal survival and taking care of oneself. Two thirds of the sample described
character qualities such as responsibility and maturity in their definitions. Lastly, about
40% linked different chronological ages with typical developmental events in adulthood
such as buying a house and being independent.
ASD & THE TRANSITION TO ADULTHOOD 12
Cheak-Zamora et al. (2015) gathered the perspectives of adolescents with ASD
ranging from 15–22 years of age on the general issues and unmet needs that they have
encountered prior to the adulthood transition and compared them to those of their
caregivers. Overall, the young adults with ASD expressed a lack of confidence regarding
their future as adults, presenting significant concerns coupled with anxious,
overwhelming thoughts and emotions. Caregivers were aware of this lack of confidence,
and some firmly believed that their child/client was not ready for the adult world. Many
emerging adults with ASD expected their transition to be linear in trajectory (i.e. in
ordered/sequenced stages), but the research shows that the trajectory is often nonlinear,
and many fall in and out of employment and postsecondary school (e.g. Taylor,
Henninger, & Mailick, 2015; Wei, Wagner, Hudson, Yu, & Shattuck, 2015).
Experiences of the Transition to Adulthood
Tracing the typical outcomes for adults with ASD has been a difficult task for
researchers due to the heterogeneity of ASD symptoms and their impact on one’s life
(Howlin et al., 2013); therefore, results may not accurately represent the entire population
of adults with ASD. Cheak-Zamora, Teti, and Maurer-Batjer (2018) conducted individual
and group interviews with 11 young adults with ASD and had them capture their
experiences of the transition to adulthood using a digital camera. When participants
described the adulthood transition, they expressed thoughts and feelings of worrying,
nervousness, and sadness. The entire sample reported anxious feelings regarding higher
education and employment as well as other aspects of independent living, such as driving
a car or using an oven. Participants also expressed difficulty in making new friends as an
adult because they had fewer opportunities for social interaction compared to when they
ASD & THE TRANSITION TO ADULTHOOD 13
were in high school where social interactions frequently occurred. Making new friends
was described as anxiety-inducing because participants found it difficult to recognize
social cues and follow social rules. Many expressed feelings of sadness, jealousy, and
anger when comparing their abilities to those of their friends and family. However, they
also expressed love and admiration for their friends and family, recognizing that family
support has had a significant impact on their growth and development. Furthermore,
animals were identified as a significant coping mechanism for the participants. Many
reported developing a strong companionship with the animals which they found difficult
to develop with another human.
Howlin et al. (2013) measured the social outcomes of 60 adults with ASD and
average IQ, and most of their sample experienced poor social outcomes across a variety
of domains throughout adulthood. Over time, their sample showed improvements in IQ
assessments, language, and ASD symptomatology; however, their current social
outcomes were poorer than in early adulthood. Sixty percent of this sample experienced
and rated their social outcomes in adulthood as poor or very poor. Seventy-two percent of
the sample did not complete any formal education after high school; 72% were either
unemployed or only able to obtain a volunteer position; and 73% lived in a supported
residential situation (e.g. parents’ home, residential home, hospital) due to limited
independent living skills. Seventy-seven percent stated that they had no specific
friendships and only made limited contact with peers in group situations. Eighty-four
percent never shared or only briefly shared a close, reciprocal relationship that involved
personal contact and shared feelings/activities.
ASD & THE TRANSITION TO ADULTHOOD 14
Transitional Pathways after Exiting High School. Studies are virtually
unanimous in reporting that meaningful employment and postsecondary rates among
emerging adults with ASD are low, and that the current transitional supports are not
effectively connecting this population with employment or postsecondary enrollment
(e.g. Farley et al., 2018; Taylor et al., 2015). Wei et al. (2015) tracked the transitional
pathways of a sample of 120 emerging adults with ASD, using employment and
postsecondary enrollment rates from the National Longitudinal Transition Study-2
(NLTS2), a comprehensive data set of the experiences of youth with disabilities as they
transitioned from high school, at three points in time over a 6-year period following high
school. In the period of up to 2 years after exiting high school, the most common
outcome for these individuals involved unemployment and no enrollment in
postsecondary school (34.7%). The size of this category decreased to 21.3% in the span
of 2–4 years after high school, and then it increased to 30.6% in the span of 4–6 years. In
addition to this finding, the researchers organized their sample into 3 transitionary
clusters. The largest cluster (57.4%) was primarily focused on postsecondary education,
and enrollment rates within this cluster peaked during the 2–4-year period at 59.2%. The
second largest cluster (29%) was continuously or increasingly disengaged in which
neither employment nor enrollment was obtained, and 100% of the sample was
disengaged for at least 2 years within the 6-year period following high school. The third
and smallest cluster (22.4%) was primarily focused on employment. Within this cluster,
employment rates peaked at 52.3% over the 6-year period, but only 4% of participants
gained full-time employment. Also, many adults with ASD found it difficult to become
employed within the first 2 years after high school.
ASD & THE TRANSITION TO ADULTHOOD 15
Research indicates that emerging adults with ASD struggle to obtain gainful
employment and postsecondary enrollment after exiting high school, and it appears to be
just as difficult, if not more, to maintain employment or enrollment over time. Taylor et
al. (2015) tracked the patterns of employment and postsecondary school enrollment
among 73 adults with ASD and average-range IQ over three points in a 12-year period
following high school. Less than one quarter of their sample (24.7%) was consistently
engaged in competitive employment or postsecondary education throughout this period.
None of the 15 women in this sample were classified as consistently engaged, which
could be attributed to the lower expectations of the parents (Holmes et al., 2018). A
cluster of their sample (42.5%) was engaged in competitive employment or
postsecondary enrollment at one point in the study, but these participants also
experienced at least one point during which they were not employed or enrolled in
postsecondary school. Over half of those who did earn a postsecondary degree within this
cluster never gained competitive employment, and none of them were employed for more
than 10 hours/week. The last cluster (32.9%) never gained competitive employment or
postsecondary enrollment over the course of the study, and nearly half never gained any
form of supported employment. Less than 10% of the entire sample was consistently
engaged in competitive employment for more than 30 hours/week, which can be starkly
contrasted by the general population’s rate of 90–96.2%. Even when adults with ASD
successfully complete their postsecondary programs, research shows that it may not lead
to employment, and it is even less likely to lead to competitive, meaningful employment
related to their field of study (Taylor et al., 2015).
ASD & THE TRANSITION TO ADULTHOOD 16
Employment. Farley et al. (2018) surveyed a sample of 162 adults with ASD
from Utah (mean age of 35.5) regarding a variety of mid-life variables including
employment, social functioning, and independent living. Using the available employment
data for 153 of these individuals, 20% were found to be unemployed. Alternatively, 80%
were engaged in some form of daily occupation, which took the form of day programs
(33%), sheltered workshops (14%), full-time, unsupported employment (12%), part-time,
unsupported employment (12%), supported employment (7%), and volunteer work (2%).
Cognitive ability, however, did not appear to influence participants’ employment status as
both employed and unemployed populations represented the full range of cognitive
ability levels. Rather, informants reported the following factors as possible reasons for
limited employment outcomes: difficulty understanding abstract/novel experiences and
staying on task, poor judgment of social situations and lack of interviewing skills, chronic
health problems, and requiring more supervision. About 65% of participants received
support from long term supports and services, and 14% had accessed vocational
rehabilitation services.
Furthermore, the meaningfulness of the employment obtained by adults with ASD
is questionable because these individuals work only an average of 5 hours per week
(Eaves & Ho, 2008). Both parents and the individuals with ASD perceived a mismatch
between the individuals’ skills and the employers’ work demands, describing their
employment as underpaid, mundane, and unrelated to their college degrees (Anderson et
al., 2017). In fact, less than half of adults with ASD who earned postsecondary degrees
were working in a field relevant to their degree (Taylor et al., 2015).
ASD & THE TRANSITION TO ADULTHOOD 17
Higher Education. Jackson et al. (2018) collected self-reported data from 56
postsecondary students with ASD on their academic and social experiences within
college as well as their mental well-being. Nearly half of the students reported feeling
slightly to very comfortable with their academic workload, and 21.4% felt slightly to very
uncomfortable, with the remaining participants falling somewhere in between. Nearly
40% of participants reported having no close friends, but 50% stated that they were
slightly to very satisfied with the number of friends they had. Over 75% of the sample
reported feeling left out, isolated, or lacking companionship often or sometimes. The rate
of loneliness correlated with the number of close friends one had and his/her satisfaction
with that amount.
Over half of the sample received a comorbid psychiatric diagnosis while attending
school, and the most common diagnoses were depression (35.7%), generalized anxiety
disorder (33.9%), social anxiety disorder (26.8%), and attention deficit hyperactivity
disorder (23.2%). The sample averaged extremely severe symptom levels of depression
and anxiety as well as severe levels of stress. Nearly 75% of the sample reported some
form of suicidal behavior in their lifetime, and 53.6% reported having suicidal thoughts
within the past year. Suicidal behavior was significantly associated with ASD symptom
severity (r = .40), number of friends (r = -.31), loneliness (r = .36), academic comfort (r =
-.30), depression (r = .56), anxiety (r = .40), and stress (r = .39).
Independent Living. Farley et al. (2018) surveyed the participants’ living
arrangements, which appeared to reflect their social functioning ratings as only 9% lived
in their own home or apartment. Forty-seven percent lived with their family of origin,
27% lived in a group home, 9% lived in an institution, 6% lived in a supported apartment,
ASD & THE TRANSITION TO ADULTHOOD 18
and 2% lived with a professional parent, who essentially serves as a foster parent for
youth with disabilities. Farley et al. (2018) also took note of the participants’ method(s)
of transportation, which could very well impact their ability to gain/maintain
employment, attend postsecondary school, and engage in social interactions. Sixty-two
percent of participants depended on family or support service staff to provide
transportation while the remaining 38% traveled independently via public transit or a
personal vehicle. Only 7% of participants had their own driver’s license. Taylor et al.
(2015) also found that adults who were consistently engaged in employment or higher
education developed better independent living skills related to meal-preparation than
those who were never engaged in these environments.
Social Engagement and Social Functioning. Farley et al. (2018) measured their
sample’s level of social engagement, and nearly two thirds were involved in at least one
organized group; however, 47% of participants reported that they spend little or no time
with their peers. Twenty percent spent 1–10 hours per week with their peers, 13% spent
11–40 hours with peers, and 20% spent 41 hours or more with their peers (these
individuals were typically involved in community living situations or day programs). The
researchers amassed social functioning ratings for their sample, and 10% were classified
as very independent, 34% were fair, 41% were limited, and 5% were very limited.
According to Cheak-Zamora et al. (2015), young adults with ASD are comforted when
they develop relationships with other individuals with ASD.
Research Questions
Farley et al. (2018) concluded that much remains to be understood about the
qualitative experience of the men and women living with ASD. They suggested that
ASD & THE TRANSITION TO ADULTHOOD 19
future research on the adult population should investigate the extent to which they are
satisfied with their current state of living, using methods that include the voices of adults
with ASD and proxies for those who are unable to articulate their own values. The
paucity of qualitative research on people with ASD and the adulthood transition led to the
following research questions: What expectations and perceptions do emerging adults with
ASD hold regarding adulthood, what have emerging adults experienced as they transition
to adulthood, and what goals do emerging adults have for their future in adulthood? Due
to the expansive nature of these research questions, a phenomenological research design
provides an appropriate framework from which key cognitive representations held by
emerging adults with ASD can be explored, including their expectations, perceptions,
experiences, and goals regarding adulthood (Creswell & Poth, 2018). The answers to
these questions will provide a glimpse of what the transition to adulthood is like for
people with ASD, allowing for the development of more effective transitional supports
and services.
Method
Participants
This research was approved by the university’s Institutional Review Board, and
informed consent was obtained from all participants in this study. Criterion sampling was
used throughout November and December 2018 to recruit participants who had an ASD
diagnosis, were 18 years of age or older, and had graduated from high school. The
researcher partnered with two organizations that provide support services for adults with
ASD in southern Ontario to forward recruitment flyers and emails to eligible clientele.
Four individuals responded to the recruitment email, and all were interested in
ASD & THE TRANSITION TO ADULTHOOD 20
participating in the study. All four participants had previously been diagnosed with ASD
as confirmed by either the parents of the participant or the organization that referred the
participant. Participants were aged from 23–29 and had graduated from the secondary
school system with some variation of a high school diploma or certificate of
accomplishment. The sample consisted of two males and two females, and 100% of the
sample was Caucasian. All four participants were employed in some manner, and all four
lived with their parents. Participation was voluntary, and no compensation was provided.
These participants will be introduced and referred to using pseudonyms. Jessica is
a 23-year-old female from southern Ontario. She works one shift every other week at a
bakery. She lives in her parents’ home, and she spends some of her free time volunteering
at a church or playing instruments. Charlie is a 23-year-old male from southern Ontario.
He lives in his parents’ home, and he spends most of his time volunteering at a senior
living community and a mental health organization. Alison is a 29-year-old female from
Ontario. She lives in her parents’ home, and she is attending postsecondary school to earn
her postgraduate certificate in behavioral sciences. Noah is a 23-year-old male from
southern Ontario. He lives in his parents’ home, and he works at a fast-food restaurant
every weekend. He also spends much of his time volunteering with several different
daycare centers.
Materials
A semi-structured interview guide that consisted of seven open-response items
was used to evoke the participants’ expectations, perceptions, experiences, and goals of
adulthood (See Appendix). The items were crafted in response to themes in past research
that have not been explicitly addressed by adults with ASD who have firsthand
ASD & THE TRANSITION TO ADULTHOOD 21
experience in the adulthood transition. The style of this interview guide was inspired by
Sites’ (2008) interview guide. Open-ended questions allowed participants the freedom to
provide as much information as they felt comfortable sharing. However, numerous
prompts were utilized to guide participants and to mitigate any anxiety they may
experience from not knowing what to share.
Procedure
Upon receiving signed informed consent forms from each participant, the
researcher coordinated a time and location to interview each participant separately.
Participants were encouraged to pick a preferred time and a location that made them feel
comfortable, such as their own home. Two of the four interviews were conducted in-
person, one was conducted over Skype, and one was conducted over the phone. The
interviews lasted 30–60 minutes. A cellphone was used to record the audio from the in-
person interviews, and a computer recording program was used to record the audio from
the Skype and phone interviews. The interview recordings were transcribed verbatim, and
the data were imported into NVivo 12 Plus to be analyzed.
Data Analysis
The data were analyzed using Robertson and colleagues’ (2018) six stages of
thematic analysis: familiarization with the data, initial coding, search for themes, review
of themes, description of themes, and production of the results report. The researcher
listened to the audio and read the transcript of each interview multiple times to immerse
himself in the data. The transcripts were coded by topic, and these codes were organized
and combined into themes. The researcher did not attempt to extract further meaning
from the participants’ responses than what was provided at a semantic level. The
ASD & THE TRANSITION TO ADULTHOOD 22
participants were emailed the results section, and they verified the trustworthiness of the
data.
Results
Multiple themes were found among the participants’ responses, which were
organized into the following categories: expectations and perceptions of adulthood,
experiences in adulthood, feelings about adulthood, and goals for adulthood.
Expectations and Perceptions of Adulthood
Independence. All four participants associated adulthood with ideas and actions
related to independence. For example, Alison stated:
Being an adult comes with a lot of nice things. You get a lot more freedom to do a
lot of stuff and learn a bunch of self-confidence-boosting things, and you can
spend some of your money how you want.
However, she noted that this freedom was limited by societal complications such as
taxes, car payments, travel for work, and having to maintain contact with friends and
remember social events. She also pondered the idea that she might have had more
freedom as a child in the sense of not having to worry as much as she does now. Both
Charlie and Noah referenced different independent living skills such as making bank
transactions, grocery shopping, cooking/making meals, washing dishes, and doing
laundry. Jessica highlighted financial independence skills such as opening a bank
account, depositing paychecks, and using a debit card, all of which she has learned since
gaining employment. She also mentioned, “I used to have a hard time focusing on work
at school, but now I do it independently.” Noah has become increasingly involved in
ASD & THE TRANSITION TO ADULTHOOD 23
scheduling his transportation through taxi services and Uber, which has given him more
independence.
Maturity and Responsibility. Two of the four participants associated adulthood
with concepts of maturity and responsibility. Alison stated, “You don’t go to play in a
park or whatever. You go out to eat, and you go for a coffee or a tea or something.”
Alison identified different events in adulthood that require a great deal of maturity and
responsibility such as moving out, getting a job, starting a family, or returning to school.
Charlie said:
When I’m out at places I got to learn what I can say and what I can’t say, you
know. That I’m an adult, and I got to learn that I got to make right choices instead
of making the wrong choices.
Charlie alluded to some of the poor choices that he made during high school. He stated
that he has learned from his mistakes, and he recognized that making mistakes is a
normal element of development.
Experiences in Adulthood
Lack of Understanding from Others. Two of the four participants regularly
experienced a lack of understanding from others. Alison stated, “There's a lot more that
goes into just functioning daily, and this is for, I think, anybody on the spectrum. There's
a lot more things that go into getting up, getting dressed, and making food.” She
illustrated her daily energy expenditure using a water bottle: half of the bottle is reserved
for everyday tasks, one quarter is used to cope with change and other stressors, and the
remaining quarter must be dispersed across every other aspect of life. “It's not shown,”
she stated, “and it's not necessarily realized [by others] the amount that actually is taken
ASD & THE TRANSITION TO ADULTHOOD 24
out of you.” She likened her difficulty with daily functioning to a computer that operates
strenuously due to the many processes that run in the background. These background
processes, though taxing, are necessary for the computer to operate. Similarly, she equips
herself with many conscious filters that are necessary to appear functional; however, they
generate stress and fatigue, and they can lead to overwhelming feelings and meltdowns.
For example, she stated that “some days my clothes drive me absolutely nuts, and I have
to try and block that, or I have to change 12 times.” Jessica also expressed the difficulty
of having to manage her hypersensitivity to loud noises.
Charlie stated that he often encountered situations in which he was misunderstood
by others, sometimes to the extent that they became frustrated with him. He stated that if
he is misunderstood, “I have to kind of figure out how I can un-confuse them where I
kind of have them relate to things that I’m going through because, with my disability, it’s
hard for people to understand me.” He stated that this struggle has become hard for him
in adulthood as people continue to misunderstand how ASD affects him. Additionally,
both Alison and Charlie acknowledged that they have trouble understanding other people
as well.
Involvement in Volunteer Work. All four participants were either actively
volunteering or were hoping to volunteer in the future. Charlie described two of his
volunteer positions: the first involved visiting residents at a senior living community and
making sure they are well, and the second consisted of raising awareness and promoting
resources for people who struggle with anxiety and depression. Initially, Charlie was
uncomfortable in his volunteer role at the senior living community until he voiced his
need for support and had the opportunity to shadow other employees. Now, he feels much
ASD & THE TRANSITION TO ADULTHOOD 25
more comfortable and less stressed in his current volunteer position than at his old job.
He said that his volunteer position at the senior living community has potential to become
a full-time job. Noah volunteers at two daycare centers, one of which is for children with
ASD, as well as a pregnancy center. His responsibilities include reading with the
children, helping them make crafts, and playing with them. Jessica volunteers at a church
to organize food and hygiene products for those in need, and Alison stated that she would
like “to give back” to the community in the future. The three participants with volunteer
positions agreed that their volunteer work has provided them with opportunities for social
growth.
Coping Mechanisms. Charlie began volunteering with a mental health
organization after they helped him learn coping strategies to deal with the effects of
bullying and his ASD. Both Charlie and Jessica stated that breathing exercises (i.e. yoga
breaths and deep breaths), help calm them when they feel upset. In addition, Charlie said
that he would go for walks and listen to relatable music to tune out his surrounding
environment and focus on himself and his breathing. Jessica’s calming strategies included
taking breaks to use her phone before returning to a task, playing instruments, and
listening to music. Charlie also recognized the importance of reaching out to others for
support to cope with his anxiety.
Transitional Supports. All four participants discussed the impact of the support
they received during the transition to adulthood. Some of the supports and services that
were referenced include parents, camp/youth leaders, coworkers, employment readiness
programs, employment support coordinators, community living services, ASD support
centers, mental health organizations, and online training resources. However, three
ASD & THE TRANSITION TO ADULTHOOD 26
participants highlighted difficulties in obtaining these supports, stating that “there's less
support as an adult,” and “it's harder when you're an adult to get those [supports] or
navigate them.” One participant appreciated the trouble that parents endure to obtain
support for their children.
Obtaining Employment. Charlie reported difficulties finding new employment
and transportation after having left a job due to being treated poorly: “With my autism, I
have trouble finding a job, and I even have trouble finding transportation because I don't
have a car, and I don't have a license, so transportation's been a big issue for me.” Noah
also cited his search for employment, his job, and his volunteer positions as making
adulthood more difficult. Additionally, Alison was apprehensive about the current
job/economic climate, not just because of the implications of her ASD, but for her whole
generation. Alison believed that her options for employment were less likely to be
unionized and offer job security benefits (i.e. health benefits and pensions), and they were
more likely to generate feelings of dissatisfaction.
Attending Higher Education. Charlie promptly left college after encountering
dreadful living arrangements and unpleasant roommates. He also stated that the online
application process for college was stressful, and he found it difficult to process all the
information. Noah considered an integrated co-op program at a postsecondary school but
decided against it due to the distance from home, uncomfortable feelings surrounding
college residency, and changing qualifications for admission.
Feelings about Adulthood
Noah expressed a sense of uncertainty and anxiety about his future and
independent living skills such as grocery shopping and financial transactions; however,
ASD & THE TRANSITION TO ADULTHOOD 27
he stated that he feels more comfortable about his future now than when he was in high
school and did not know where he was headed in life. Alternatively, Alison stated that the
freedom to do different things in adulthood increased her self-confidence. She said that
she is confronting adulthood one step at a time to avoid confusion and overwhelming
feelings; however, she sometimes found herself feeling frustrated and disheartened when
she compared her position in life to those of people around her.
Alison described herself as living with high-functioning ASD, which may be
unrecognizable by most people, and she outlined several distressing elements of
adulthood. She stated that stress could ensue in adulthood because “when you’re an adult,
[it’s] even worse because as you get older people expect more from you.” She described
these expectations as frustrating and depressing. She also expressed how frustrating it can
be to lose support because she appears to function without any need for support, and then
“the next month maybe you'll have a panic attack and break down because there's no
support!” Alison stated that another frustrating and depressing element of adulthood is
that her desire for autonomy is impeded by her overwhelming feelings in response to
complex governmental and social systems (e.g. taxes, filling out forms, politics) even
though she understands them and why she struggles with them.
Feelings about Moving Out. Alison, who is in the process of moving into her
own independent basement apartment, expressed feelings of relief as more of her
belongings are moved down. When Noah considered higher education, the process of
moving into college residency was cited as a source of uncomfortable feelings. Also,
Charlie experienced severe anxiety when he moved out of his home into college
ASD & THE TRANSITION TO ADULTHOOD 28
residency: “I couldn't handle it, so I broke down, and I was like, ‘I need to go home; I
don't feel comfortable here.’”
Feelings about Social Relationships. Alison stated that she felt relatively
comfortable sharing with others that she is on the spectrum; however, she felt uneasy
about disclosing her ASD to employers because of a concern that employers may be
reluctant to hire someone with ASD. She has encountered social situations in which
disclosing her ASD has worked against her, so she is more careful about sharing it now.
She described herself as “a deer in headlights” when she encounters social interactions
that she has not prepared herself for or is expectant of, and she may come away from
those interactions feeling like she misinterpreted someone and said the wrong thing. She
stated that social skills and understanding social scripts and rules are necessary for
success, but these social systems overwhelmed her at times. Charlie said that he has
missed a lot of friendships since leaving high school and that it has been difficult to
maintain them. He expressed fears of these relationships ending and anxiety about what
past friends may think of him.
Feeling Proud in Adulthood. Alison identified a successful moment in
adulthood in which she received her college diploma in the mail and showed it to her
mom and friends: “That was just a great feeling: just getting it in the mail. It was just
wonderful, opening it and seeing it there. That was just great!” The diploma represented
all her hard work and her mother’s support, which paid off in the face of adversity.
Charlie felt successful when he was able to “figure out pieces and put things together” to
accomplish different activities that his camp leaders encouraged him to try like lawn
bowling. Jessica felt very proud of herself when she sang the national anthem at multiple
ASD & THE TRANSITION TO ADULTHOOD 29
prominent sporting events, and both Noah and Jessica expressed a sense of achievement
after gaining employment.
Goals for Adulthood
Employment Goals. Alison expressed a desire for a stable job that is related to
her field of study, behavioral sciences, and is more fulfilling than entry-level jobs. She
would like her future employment to have good benefits that cover medication and dental
costs, or an adequate salary so that she could cover the costs herself. She stated that she
would like to work with people with higher-functioning ASD “so that I can teach them
the skills that I had to learn more brutally, so they don’t have to learn them brutally, so
it’ll be easier for them.” However, she stated that she does not want a job in which she
would have to provide personal care for others. Charlie expressed a desire to gain
meaningful employment where he fits in and feels accepted: “I’m just kind of looking for
places that I think might accept me for me because I’ve had a lot of struggles with
different places, and I just want to find a place where I fit in.” He did not have a specific
job in mind but hoped to work somewhere in his hometown where he feels safe and
comfortable. Jessica stated that her goal is to gain full-time employment at the bakery she
currently works at, and Noah stated that his goals include finding more job opportunities
and working with kids.
Higher Education Goals. Both Charlie and Noah have no current goals for any
form of higher education, but Jessica would like to enroll in a cake decorating course,
which is relevant to her current job. Alison is nearing the end of her postsecondary
studies, and it is her goal to earn a postgraduate certificate in the behavioral sciences,
which will help her achieve her employment goals.
ASD & THE TRANSITION TO ADULTHOOD 30
Independent Living Goals. All four participants currently live in their parents’
home, but each expressed a desire to live independently, and most wanted to get their
driver’s license. Noah stated that he would rather live on his own than in a community
living arrangement. Alison’s independent living goals were financially oriented, and
since moving out is so expensive, she is converting the basement of her parent’s home
into her own apartment. In addition to moving out, Charlie mentioned that he would like
to improve his cooking skills.
Social Engagement and Social Functioning Goals. Alison said that once she
has achieved her postsecondary education, employment, and independent living goals,
she will have enough energy to start looking for a significant other. She was also
interested in finding a social group, possibly even online, to play tabletop roleplaying
games with. Jessica desired more social connection, stating, “I really, really want to be
social with friends and things like that,” and she identified many activities that she would
like to do with friends such as going to the movies and eating dinner together.
Charlie expressed a strong desire to be understood by others:
I just want people to realize that autistic people aren't different than anyone else,
that we all are loving and caring, and that we just need someone to be there for us
and to have friends and to be loved and to be appreciated. That's all that we ask
for is to be accepted by people.
It is one of his goals to spread ASD awareness and “show people that we're all the same.”
Alison also expressed the need for greater ASD awareness, and she hoped to improve her
understanding of social situations by practicing social skills and learning social scripts.
Charlie stated that he would like to promote mutual understanding in his social
ASD & THE TRANSITION TO ADULTHOOD 31
interactions by having both parties explain their perspectives. He stated that bringing a
trusted, mutual friend to mediate the conversation may help facilitate effective,
meaningful communication.
Discussion
As participants described their expectations and perceptions of adulthood, all four
referred to a variety of actions that demonstrate their ability to live independently. Two
out of the four developed this theme of independence, suggesting that expectations of
maturity and responsibility influence how they wield their independence in adulthood.
The concepts that these participants associated with adulthood mirror those of the sample
from Anderson and colleagues’ (2016) study.
This sample reflects the least popular transitional pathway from the study of Wei
and colleagues (2015) as three out of the four participants were primarily focused on their
employment goals and expressed little to no interest in pursuing higher education.
However, one participant was focused on her postsecondary education goals which, in a
linear fashion, are essential to achieve her employment goals (Anderson et al., 2016). It
should be noted that all but one participant was engaged with multiple forms of volunteer
work, which may be a by-product of the low rates of full-time employment opportunities
described by Farley et al. (2018) and Taylor et al. (2015). Fortunately, these volunteer
positions placed participants in an environment that fostered interpersonal relationships.
Participants acknowledged the impact of various supports during their transition,
but they strongly echoed the widespread concern for the lack of transitional supports that
was reported throughout the literature (e.g. Anderson et al., 2017; Cheak-Zamora et al.,
2015; Jackson et al., 2018). Unfortunately, participants expressed a range of negative
ASD & THE TRANSITION TO ADULTHOOD 32
emotions, like those from the study of Cheak-Zamora and colleagues (2018), about
having to confront different domains in adulthood including employment, independent
living skills, moving away from their parents, and social situations. This anxiety
surrounding adulthood may reflect the participants’ uncertainty toward the current lack of
transitional supports and their ability to propel the participants into successful adulthood
outcomes. Nonetheless, they all felt proud of their achievements in employment, higher
education, and social activities, and each of them held similar goals of living
independently, obtaining meaningful employment to support their independence, and
increasing and improving their social relationships.
Lastly, two of the four participants experienced a lack of understanding from
others to such an extent that one of them made it his goal to spread ASD awareness and
improve society’s understanding of ASD. Cheak-Zamora et al. (2018) found that
emerging adults with ASD ultimately want others to understand that just because they are
different, it does not mean that they should be looked down on or rejected. Sadly, the
public’s misperceptions of ASD can be discouraging for both caregivers and people with
ASD (Cheak-Zamora et al., 2015). Thus, society should strive for more inclusion among
adults with ASD within higher education and the workplace to increase their neurotypical
counterparts’ positive attitudes toward individuals with disabilities (Wei et al., 2015).
Limitations
These findings cannot be generalized to the entire population of adults living with
ASD because this study only included the expectations, perceptions, experiences, and
goals of four adults with ASD. It would not be appropriate to generalize these findings to
all adults with ASD because this sample cannot represent the full range of physical,
ASD & THE TRANSITION TO ADULTHOOD 33
psychological, and economical differences of the study population. Individual interviews
provided participants with an opportunity to freely express themselves; however, some
participants were less inclined to express their thoughts and emotions. Also, the
researcher may not have probed the participants’ responses effectively to encourage the
elaboration of their responses. One of the four interviews was performed over the phone,
so the researcher was unable to gather rich observations of the participant’s nonverbal
communication. Two of the four interviews were completed with one of the parents
present which may have biased the participants’ responses.
Recommendations for Future Research
There is still much to be explored as adults living with ASD seek bigger and
better opportunities. It may be worthwhile to replicate this study with more effective
techniques to acquire deeper insight from emerging adults with ASD about their
emotional states and cognitions regarding different domains of adulthood. Field
observations of these adults in different environments could also help explain this
transitional phenomenon, and findings could be compared to the participants’ responses.
By continuing and improving upon research in this field, researchers and stakeholders
will improve their understanding of how people with ASD transition to adulthood and
how this transition can be facilitated to increase their quality of life.
ASD & THE TRANSITION TO ADULTHOOD 34
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ASD & THE TRANSITION TO ADULTHOOD 40
Appendix
Interview Guide
Directions: The purpose of this interview is to gather information about your
expectations, perceptions, experiences, and goals regarding your transition into
adulthood. Feel free to refuse to answer any question that causes you to feel
uncomfortable. However, I would encourage you to answer each question to the best of
your ability. Let me know if you would like me to repeat a question or if any question is
unclear. Feel free to request a break at any point during the interview.
1. Please tell me about yourself.
A. What does a typical day look like for you?
B. How do you like to spend your free time? Do you have any interests/hobbies?
2. How are you different today than when you were as a teenager?
3. Describe your understanding of adulthood and how you came to this
understanding.
A. Prompts:
I. Synonyms, phrases, closely related concepts
II. Thoughts, ideas, concepts, expectations, and experiences that come to
mind
4. What has been your experience of adulthood?
A. Prompts:
I. Postsecondary Education (e.g. application process, moving out, campus
life, school relationships)
ASD & THE TRANSITION TO ADULTHOOD 41
II. Employment (e.g. application process, work environment, work
relationships)
III. Independent Living (e.g. different living arrangements, mental/physical
well-being maintenance, cooking, cleaning, transportation, financial
matters)
IV. Social Life (e.g. developing new friendships, maintaining old friendships,
new interests/hobbies)
B. Describe for me a time when you felt successful.
C. What challenges have you encountered?
5. What has helped you transition into adulthood?
A. Have you been involved in any training/support services?
B. How have your relationships with other people supported/interrupted this
process?
6. What are your goals for the future?
A. Prompts:
I. Postsecondary Education (e.g. school and program type, grades,
involvement in clubs, sports, and research)
II. Employment (e.g. job responsibilities, work hours, job location, financial
compensation, characteristics of the work environment)
III. Independent Living (e.g. autonomy, moving out of parents’ home,
mental/physical well-being, cooking skills, cleaning skills, financial
matters)
ASD & THE TRANSITION TO ADULTHOOD 42
IV. Social Life (e.g. number of friends, types of friends, romantic
relationships, family relationships, frequency of meeting friends, shared
activities with friends)
7. (If not addressed in previous questions): How would you describe the impact of
autism on your life?
Closer
Thank you for your meaningful responses. The information you shared has greatly
increased my understanding of how individuals living with ASD navigate their transition
into adulthood. Your responses will help researchers develop effective forms of support
to help people living with ASD transition into adulthood and achieve their goals. Is there
anything else you would like to share before we conclude the interview? Do you have
any questions for me? Wonderful! That is everything, then. Thank you for participating
in this study, and I hope you have a great rest of your day.
