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Assessing the Gaps in Aid for Autistic Individuals Transitioning to Adulthood

AP Research

May 2022

Word Count: 5,493

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Abstract

In recent years, the prevalence of autism spectrum disorder has grown exponentially,

especially within the United States. As more individuals are diagnosed with autism, more will

transition to adulthood and put a strain on the scarce resources available to them. Further, there is

limited research on transition services which hinders transition service providers from knowing

how their users feel about the success of their programs. This paper evaluates which components

of current transition programs for adults with autism are most effective and most accessible at

this time. The evaluated elements included mental health, physical health, health insurance,

post-secondary education, employment, and housing. The data was gathered using a survey that

was completed by 30 parents of autistic adults. The survey gathered both qualitative and

quantitative data using a variety of question types, including multiple-choice, rating scale, and

short-response. The questions asked participants where they received services, what components

they received, how effective and accessible the components they received were, why certain

aspects were inaccessible, what they liked and disliked about the services they received, and their

suggestions for the future. The findings were analyzed using descriptive statistics and thematic

analysis. Through this analysis, the researcher found that health insurance was the most effective

component and post-secondary education was the most accessible. Housing ranked lowest for

both effectiveness and accessibility. Moreover, participants want to see more service success,

increased access, and better support throughout the transition process.

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Table of Contents

Abstract 2

Introduction 5

Review of Literature 6

Inaccessible Healthcare 6

Post-Secondary Education Participation 8

Employment Opportunities 9

Housing and Living Arrangements 10

Gap in the Field 11

Methodology 12

Research Design 12

Participants 12

Instrument 13

Procedure 13

Ethical Considerations 14

Defense of Method 15

Findings 16

Service Providers 16

Transition Service Components 17

Effectiveness and Accessibility by Component 19

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Reasons for Inaccessibility 23

Thematic Trends in Personal Experiences and Suggestions 25

Conclusions 32

Limitations 33

Implications 34

Directions for Future Study 35

References 36

Appendix A 40

Appendix B 42
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Introduction

The Center for Disease Control and Prevention (2020) defines autism spectrum disorder

(ASD) as having “persistent impairments in social interaction and the presence of restricted,

repetitive patterns of behaviors, interests, or activities.” As of 2014, autism spectrum disorder

occurred in one in fifty-nine children, a drastic increase from one in ten thousand in the 1970s.

With the recent increase in youth diagnoses, critics speculate that there is a considerable amount

of adults living undiagnosed (Brosnan, 2020). Policymakers have taken measures to increase the

number of services available for the growing number of autistic youth, yet neither research nor

aid has been efficiently developed to benefit adults living on the spectrum (Gorenstein et al.,

2020; Brosnan, 2020). Moreover, compared to children with the disorder, autistic adults are

statistically less likely to receive the services they need (Dudley et al., 2018). It is also important

to consider that as the new wave of autistic youth transitions to adulthood, a heavier strain will

be put on the current services and resources available to autistic adults.

Autism is often accompanied by concurrent mental and physical health disorders;

consequently, individuals with autism have a higher need for health services (Mason et al.,

2019). Nonetheless, autistic individuals lack access to quality care due to barriers such as

discrimination and elevated treatment costs, which insurance fails to cover (Hosking et al., 2016;

U.S. Department of Health and Human Services, 2017). Likewise, autistic individuals face

barriers regarding post-secondary education, employment, and housing—crucial aspects of

successful adult life. However, many of the services provided to transitioning autistic youth via

this legislation end after graduation, leaving these young adults susceptible to the “services

cliff”1 (Liu et al., 2018; U.S. Department of Health and Human Services, 2017).

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The tendency for autistic individuals to lose access to services and supports after turning a
certain age, usually around twenty-one (Schott et al., 2020).
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The purpose of this study is to determine the most effective and accessible aspects of

current transition programs for autistic individuals transitioning to adulthood to form more

comprehensive programs in the future.

Review of Literature

This review of literature will analyze the current state of healthcare, post-secondary

education, employment, and housing services for adults with autism spectrum disorder. Further,

it will establish why these aforementioned components are crucial in organizing transition

services.

Inaccessible Healthcare

Because of their elevated healthcare needs, autistic adults have a higher rate of usage of

health-related services and, in turn, a higher need for them. Unfortunately, people with

developmental disabilities, as a whole, face inequalities and disparities within healthcare

compared to the neurotypical population (Lauer & McCallion, 2015). Further, healthcare is the

most expensive service for individuals with autism, with lifetime costs reaching as high as two

million dollars (Coleman & Adams, 2018; Shiozawa, 2014). Taking this all into account, this

section of the review of literature will focus on the current state of and need for mental and

physical health services, as well as health insurance to mitigate the costs of treatment.

Compared to the rest of the population, individuals with developmental disabilities have

heightened mental health struggles in terms of both number and severity (Lauer & McCallion,

2015; Hosking et al., 2016). Lauer and McCallion (2015) also include that the developmentally

disabled community generally has a higher mortality rate than their neurotypical counterparts.

Hosking et al. (2016) attribute this statistic to unequal access to healthcare in general, arguing
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that individuals with developmental disabilities had a higher percentage of deaths that could have

been preventable should quality healthcare have been accessible. In addition, Hunsche et al.

(2020) connect the high mortality rate to suicide. The need for mental health services specifically

for adults with autism is evident. Left untreated, comorbid anxiety and depression can lead to

poor academic success and low quality of life (Capriola-Hall et al., 2020). There have been some

recent efforts in terms of mental health programs targeting adults with autism, including the

Stepped Transition in Education Program for Students with ASD (STEPS). While the program

was successful in alleviating depression in autistic students, it had little influence on anxiety and

loneliness and lacked the appropriate tactics to do so.

One of the main goals of a successful transition to adulthood, as identified by the U.S.

Department of Health and Human Services (2017), is healthy living. Mason et al. (2019) explain

that there are two types of barriers currently causing unpleasant healthcare experiences for

autistic patients: patient- and doctor-level. On the patient-level, issues with verbal

communication, sensory triggers, and difficulty processing information can all impede the

quality of care. Lack of accommodation for communication and support as well as lack of

knowledge on autism, as corroborated by Gerber et al. (2017), are all doctor-level barriers that

have been obstructing care for autistic patients. From research and medicine institutes across the

country, Nicolaidis et al. (2015) elaborate on the doctor-level knowledge of autism by suggesting

that there are gaps in provider training; further, they assert that there is a lack of healthcare

transition services. It is recommended that policymakers focus on what each young adult values

and to avoid the expectation that every individual’s transition process will be the same.

The varying symptoms and comorbid health issues make treatment of autism spectrum

disorder costly and difficult. Families and individuals may seek relief from their healthcare
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expenses through insurance coverage. However, autistic patients are often denied coverage due

to the elevated costs, comparatively. Due to the rising prevalence of autism and therefore rising

annual service usage costs, insurance companies may deny coverage for certain treatments.

Moreover, for the services and treatments insurance companies do cover, there are limits

(Cernius, 2016). Choi et al. (2020) elaborate by claiming insurance companies may place limits

on the number of services, amount of therapy sessions or therapy hours, annual or lifetime costs,

or age. Fortunately, some states have autism mandates, which require insurance coverage for

certain autism treatments. However, thirty-six states in America have age caps for these

mandates, with twenty-one of them ceasing benefits after high school. Medicaid and

home-and-community-based services are commonly used to mitigate healthcare costs. Autistic

individuals spend an average of forty-eight months on waiting lists for these services and have a

higher rate of unmet healthcare and service needs.

Post-Secondary Education Participation

Compared to the neurotypical population, autistic adults have lower post-secondary

education attendance and graduation rates. The Individuals with Disabilities Education Act

(IDEA) of 2012 requires public high schools to connect special education students with

post-secondary education services (Anderson et al., 2020). However, this excludes autistic

students attending private, charter, or other non-public high schools as well as those who do not

qualify for special education programs, leaving this demographic without knowledge of the

opportunity for higher education. Autistic individuals who do attend post-secondary education

report receiving higher pay and longer hours in terms of employment, ensuring financial stability

in adulthood (Anderson et al., 2020). Further, autistic students observed that attending a college

or university taught them independence and social skills necessary for adulthood (Van Hees et
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al., 2018). Unfortunately, post-secondary autistic students face barriers that interfere with the

quality of their education. Sarrett (2017) specifically mentions the lack of accommodations and

unsatisfactory knowledge of autism spectrum disorder, similar to the barriers faced in healthcare

settings, as well as sensory issues and stigmatization as areas of distress for autistic students on

campus. Still, the most pressing issue is that of participation. While post-secondary education has

been proven to be a positive influence and aid to prepare autistic individuals for the adult world,

over half of the autistic teenagers in the United States who graduated within the past two years

were not enrolled in higher education, evidence of policy failure (Anderson et al., 2020).

Employment Opportunities

As previously noted, financial stability and freedom are important aspects of ensuring a

successful adult life and can be achieved through obtaining employment. In addition to stable

adult life, Anderson et al. (2020) note that employment leads to social interaction, daily

engagement, and increased self-esteem, all of which can help mitigate some of the symptoms of

autism. However, employment rates for adults with autism spectrum disorder can range from

11.8% to as low as 4.1%, ranking them the lowest employed subgroup out of all other

developmental disabilities (Gorenstein et al., 2020). Further, Schott et al. (2020) from the ​A.J.

Drexel Autism Institute and Bureau of Supports for Autism and Special Populations estimate that

only around 5.5% of autistic adults are making more than $20,000 per year. Coleman and Adams

(2018) assert that the biggest challenges to finding and keeping employment for autistic adults

are autism symptoms and absence of prior experience, followed by sensory issues, lack of

transportation, and difficulty passing interviews. Recent research has proved that virtual reality

training can help relieve some of these challenges and lead to increased emotion recognition,

confidence, and success in interviews; unfortunately, virtual reality and other technology-based
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programs are not made readily available to the autistic community (Gorenstein et al., 2020).

Most disabled individuals participate in day habilitation programs2 or sheltered workshops to

help prepare them for the workforce (Friedman & Rizzolo, 2017). However, this segregated

approach does not translate to real-world employment experiences and has also been a proven

predictor of lower pay. Supported employment, rather than sheltered, allows for the disabled and

neurotypical population to interact and leads to a higher quality of life. Supported also includes

ongoing employment retention support and teaching basic job skills before employment. Future

transition programs that could connect transition-age autistic individuals to opportunities like

these would help increase employment rates and lessen the barriers to joining the workforce.

Housing and Living Arrangements

One of the predictors of finding success in and access to transition services is living

arrangements. Housing support for autistic adults is not a one-size-fits-all fix, especially since

different autistic adults have varying degrees of living skills and needs. While living alone may

not be appropriate for all autistic adults, psychologists Cardon et al. (2020) declare that extended

care is unreasonable. Schott et al. (2020) further corroborate this assertion by claiming that those

living independently have more unmet physical health needs. However, most autistic adults do

not live independently, but rather live with a parent or guardian after graduating high school,

which Cardon et al. (2020) argue causes adverse effects on parents and a lower quality of life for

adults with autism (Dudley et al., 2018). Dudley et al. (2018) advocate for supported living,

which has been proven to lead to a higher rate of receiving employment, mental health,

independent living skills, and transportation services than living with a parent. Moreover, those

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Include regularly scheduled activities and skill improvement in a group setting (Friedman &
Rizzolo, 2017).
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in supported living are 2.6 times more likely to say they did not need more services than those

living with a parent or caretaker. While various researchers have suggested favorable living

situations for autistic adults, there is still a lack of research within the sector. It is logical to say

that the lack of research has damaged the ability of transition services to provide autistic adults

with appropriate housing arrangements.

Gap in the Field

While there have been studies on individual aspects of transition services for autistic

individuals, such as for healthcare, post-secondary education, employment, and housing

resources, there have been no studies on transition programs as a whole. Gorenstein et al. (2020)

confirm this inconsistency by affirming that there is a gap in research involving the autistic

community and the transition to adulthood involving missing elements of transition services. The

U.S. Department of Health and Human Services (2017) specifically notes that transition aid is

lacking in individualization, comprehensiveness, and availability in their report to Congress,

which no other study has investigated all at once. Further, most current autism research focuses

on children rather than adults, even though there are currently over five million adults over

twenty living with autism (Dudley et al., 2018). This study aims to evaluate how accessible and

effective certain aspects of transition programs are, including healthcare, post-secondary

education, employment, and housing, as determined by autistic adults themselves.

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Methodology

Research Design

A qualitative study was conducted in order to determine the gaps in transition services for

individuals with autism who are transitioning to adulthood. A survey was appropriate for

generating this data as it produces qualitative findings, which can be analyzed through statistical

and thematic analyses. The broad scope and user-friendly nature of surveys allowed for a

maximum number of responses for an already niche and sensitive target population.

Participants

Due to ethics, the researcher could not directly survey autistic adults. The researcher

decided that the closest alternative would be to survey parents of the autistic adults on their

behalf. This would ensure that the opinions of those directly affected by transition programs were

still able to be heard without violating ethics. The survey was meant for parents of autistic adults

across the United States and its territories due to the drastic increase in prevalence outlined by

the Center for Disease Control and Prevention (2020) for this geographical region. Data from

other countries or continents may produce varying findings due to different social conditions,

specifically related to autism prevalence and available aid. Specific states or regions were not

chosen as limiting qualifiers due to the relatively small target population. In order to qualify for

the study, prospective participants had to be parents of autistic adults who had used transition

programs for their children sometime in their lives.

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Instrument

A survey with seven questions was sent out to parents of autistic adults who had used

transition services all across America. The survey was designed to collect both qualitative and

quantitative data through varying question types. The specific aspects the researcher included for

evaluation were mental health, physical health, health insurance, post-secondary education,

employment, and housing. The survey was comprised of three multiple-choice questions, two

rating-scale questions, and two short response questions. The multiple-choice questions included

where the autistic adults received aid upon their transition, what aspects of transition services

they were provided, and why (if applicable) any aspects of the services were inaccessible to

them. The two rating scale questions asked to what extent the aspects of transition services were

effective and accessible. The two short response questions provided a space for the parents to

specify what aspects of the transition services their son or daughter liked, as well as suggestions

for changing transition services in the future. Survey questions and answer choices can be found

in Appendix B.

Procedure

Since this study involved human participants, Internal Review Board (IRB) approval was

needed before the researcher began collecting data. The IRB committee determined that the

researcher’s study did not have any ethical or emotional harm to participants. No identifying or

sensitive information was collected during the data collection process.

The researcher reached out to the services listed by Autism Speaks in the transition

guides on their “Transition to Adulthood” page, including the Postsecondary Educational

Opportunities Guide, the Employment Tool Kit, and the Housing and Residential Supports Tool
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Kit. The researcher also reached out to Statewide Independent Living Councils in all of the states

and territories in the United States to ensure appropriate geographic spread. Many of the

directors of these programs who responded also suggested other programs and services, and

those who said they could not be of assistance sent the survey to networks they knew who could.

Others suggested posting on Facebook support groups. Facebook is a popular social networking

site among the audience the researcher was targeting, so it was appropriate to pursue this

direction. The researcher ended up reaching out to over sixty admins of various Facebook

support groups, including geographical and local groups, groups specific to parents of adults

with autism, and groups for parents of children of all disabilities.

Ethical Considerations

IRB approval was necessary before the researcher began collecting data. None of the

questions pose any ethical, physical, or emotional harm to participants. All participants were

required to sign a consent form before completing the survey. The consent form can be found in

Appendix A.

Defense of Method

The researcher chose to do a qualitative study through a survey sent out to parents of

autistic adults. Since the target population for the survey was niche, a survey, rather than an

interview, is more appropriate since it would ensure the maximum amount of responses. Surveys

are quick and relatively user-friendly. Aspects of interviews such as difficulties with coordination

and Covid-19 considerations would deter potential participants and skew or hinder data

collection.
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In terms of the instrument, a survey of varying question types was the most efficient way

to generate the findings needed to support the focus of the study. The multiple-choice questions

allow the researcher to determine which modes of transition services need the most attention for

improvement as well as which barriers need to be focused on and eliminated to ensure families

get the transition support they need. The rating-scale questions provide a baseline for which

aspects of transition services (out of physical health, mental health, health insurance,

post-secondary education, employment, and housing) are most lacking in the autistic community

in terms of relative efficiency and accessibility. The short response answer boxes allow parents

of autistic adults to make any suggestions or observations that they were unable to share due to

the nature of previous questions.

Findings

The survey was completed by thirty eligible participants across the United States. All

thirty of the respondents completed the accompanying consent agreement, which validated their

responses. The results from the survey were analyzed using descriptive statistics and thematic

analysis.

Service Providers

Table 1 depicts the results of the first question, which asked where the participant’s son or

daughter received aid upon transitioning to adulthood. Answer choices included “Public school”,

“Non-public school (charter, Montessori, religious, boarding)”, “Private special education

school”, “Government funded program(s)”, “Private/Non-profit program(s)”, “I do not wish to

answer”, and “Other (please specify)”. The last answer choice provided a space for respondents

to list where they received transition services if it was not listed in the previous choices.
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Table 1

The most commonly picked answer choice for this question was “Public school,” with

46.47% of respondents choosing this option. The least commonly picked answer choice was

“Non-public school (charter, Montessori, religious, boarding),” which was chosen by none of the

respondents. Based on the frequencies of these answer choices, it is logical to say that most of

the respondents received aid from their public school system, and no respondents received any

sort of service from non-public schools. It is also a possibility that none of the respondents’

children attended non-public schools that were not specifically for special education, which

could account for the absence of responses in this category. In addition, none of the respondents

said they did not wish to answer, which means that all of the service providers for each

participant were accounted for. 30% of the participants did not receive services from any of the

listed answer choices and instead recorded their answers under the “Other (please specify)”

category. Repeated themes among the answers under this option included not receiving any aid
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and finding services themselves. One respondent reported receiving aid from the juvenile

incarceration facility their child was in.

Transition Service Components

The second question asked respondents what components of transition services they

received from providers. Answer choices included “Mental health”, “Physical health”, “Health

insurance”, “Post-secondary education”, “Housing”, “Employment”, “ I do not wish to answer”,

and “None of the above”. All respondents completed this question by choosing at least one of the

answer choices from the aforementioned list. Responses are recorded in Table 2.

Table 2

The most commonly picked answer choice for this question was “Employment”, with

46.67% of respondents reporting that they received some sort of employment service upon their
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transition to adulthood. The “None of the above” option was chosen second most frequently with

36.67% of the respondents choosing this answer. This means that nearly 40% of participants

received none of the transition aid components noted by the United States Department of Health

and Human Services (2017) as necessary for a successful transition. None of the respondents

said that they did not wish to answer this question, meaning all data in this question was

accounted for. The least picked answer choice for this question was the “Physical health” option

with a mere 3.33% of respondents choosing this option. According to this frequency, only one

respondent reported receiving any sort of service regarding the physical health of their child.

Effectiveness and Accessibility by Component

The third and fourth questions involved 5-point Likert scales for participants to report the

overall effectiveness and accessibility of the service components they received. The component

options were the same as those listed in the previous question. The third question asked how

satisfied the son or daughter of the respondent was with the services they received. The Likert

scale for this question was: (1) “Very unsatisfied”, (2) “Unsatisfied”, (3) “Neutral”, (4)

“Satisfied”, and (5) “Very satisfied”. The fourth question asked respondents how accessible the

transition services they received were. The Likert scale for this question was: (1) “Very

inaccessible”, (2) “Inaccessible”, (3) “Neutral”, (4) “Accessible”, and (5) “Very Accessible”. For

both of these questions the “N/A” option, which was for respondents who did not receive the

component listed for that row, received a Likert point score of zero. Tables 3 and 4 depict the

results for these questions.

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Table 3

For each component, none of the average ratings ever fell above a rating of 3, which

would fall in the “Neutral” category. These average ratings also never fell below a rating of 1,

which means that, on average, respondents were unsatisfied with the transition elements they

received. This conclusion comes from the fact that all of the average ratings for each component

were in the 2s, which falls in the “Unsatisfied” category. The component with the highest

average rating was the ‘Health insurance” component with an average rating of 2.56. Although

the participants were, on average, unsatisfied with this element, they were the most satisfied with

this component out of the other options. The lowest-rated component was “Housing”, which had

an average rating of 2.32. According to this average score, respondents were least satisfied with

housing services and found them the least effective out of the listed components.
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Table 4

Similarly to the effectiveness ratings, none of the average ratings for accessibility ever

rose above a 3, or the “Neutral” category, nor ever fell below a rating of 1, or the “Very

inaccessible” category. Since all of the average ratings fell in the 2 range or the “Inaccessible”

category, it is logical to assume that the respondents, on average, felt that the transition services

they received were inaccessible. The highest-rated component in terms of accessibility was

“Post-secondary education” with an average rating of 2.35. Although respondents on average felt

this component was inaccessible, they reported that this component was the most accessible of

the options listed. The “Housing” component was once again the lowest-rated element, with an

average accessibility rating of 2.00. Based on this average rating, respondents felt that housing

services were the least accessible of the components listed.

Reasons for Inaccessibility

The fifth question was specifically directed towards respondents who answered

“Inaccessible” or “Very inaccessible” on the previous question to determine why they gave these

ratings. A “N/A” answer choice was available for those who did not choose these ratings for any
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of the transition service components. Answer choices for this question included “Affordability”,

“Knowledge of Existence”, “Distance”, “I do not wish to answer”, “N/A”, and “Other (please

specify)”. The last answer was for those who rated transition services “Inaccessible” or “Very

inaccessible” for reasons other than those listed as answer choices. All participants completed

this question by choosing one or more of the answer choices. Results from this question are

recorded in Table 5.

Table 5

The most commonly chosen reason for lack of transition service accessibility was the

“Knowledge of existence” answer choice, with 43.33% of respondents choosing this option.

Based on this frequency, most respondents felt like transition services were inaccessible because

they did not know about them. The second most picked answer choice for this question was

“Other (please specify)”. 35.67% of respondents felt that their transition services were

inaccessible for reasons other than those listed as answer choices. A few themes found among

the answers listed by respondents themselves included not having options in their region, long
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waitlists, Coronavirus, and late diagnoses. The least frequently chosen answer was “Distance”,

which was picked by 13.33% of respondents. Based on this frequency, distance was the least

prominent factor in the accessibility of transition services.

Thematic Trends in Personal Experiences and Suggestions

The last two questions of the survey were short responses and asked about the “likes” and

“dislikes” of transition services as well as suggestions for future changes. Based on the nature of

this question, the responses produced qualitative data that was analyzed through thematic

analysis. The researcher used the qualitative data analysis software ATLAS.ti to identify codes

within responses which were then grouped into broader themes. Tables 6, 7, and 8 display the

identified codes and themes and their frequencies. Table 6 corresponds with the reported “likes”

from the seventh question. Table 7 lists the themes identified in the reported “dislikes” from the

seventh question. Table 8 corresponds with the suggestions from the final question of the survey.

Table 6

The “Service success” theme was the most frequently identified out of the responses that

mentioned what they liked about transition services. Based on this piece of data, the success of

transition services remains the most liked element of transition services. The “Accommodations”

and “Guidance” themes both ended up with a frequency of three. More than one participant
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noted that they appreciated the accommodations provided by transition services and the guidance

they received during the process but not as many that reported liking the success of their service.

The “Comprehensiveness” theme was only identified twice, making it the least frequently

identified theme in terms of “likes”. Based on this frequency, few respondents reported having

comprehensive programs.

Table 7

When comparing frequencies to Table 6, it is evident that more respondents had negative

feedback on their transition service experience than positive feedback. Of the seven identified

themes from Table 7, five were classified as significant due to relative frequency values. The

“Access” theme had the highest frequency of all “dislikes” themes; based on this frequency,

respondents most disliked the elements that caused transition services to become inaccessible.

The “Guidance” category was the second most frequently identified theme within responses,

meaning that many respondents disliked the lack of direction or advice they received during the

transition process. The “Service staff” theme also had a relatively high frequency. However, not

as many respondents reported having unsatisfactory service staff as those who disliked the
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inaccessibility and lack of guidance. “Individualization”, “Comprehensiveness”, and

“Communication” had less significance in terms of identified themes in responses than the first

three themes due to a lack of noted frequency. The “Specific dislikes” theme stemmed from a

singular response noting a problem with mental health services. Since this theme was only

identified once, it was denoted by the researcher as relatively insignificant. Based on this

conclusion, respondents rarely expressed dislike for specific components of transition services.

Table 8

The final question in the survey asked participants for suggestions for future transition

services. The fifteen tagged codes from the responses to the final question in the survey were

consolidated by the researcher into seven distinct themes. Responses that mentioned wanting

more support from their schools or professionals and more knowledge on aid opportunities were

grouped into the “Better transition support” category. This theme was tagged in ten responses,

meaning it had the highest frequency out of the seven identified themes. According to this

frequency, the most common suggestion among participants was to improve support during the

transition process. The second most frequently identified theme among responses was the
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“Specific suggestions” theme, which included responses that mentioned specific component

suggestions or suggestions for specific programs. Based on this frequency, many participants

suggested improvements to specific components of transition services or suggested certain

programs themselves. Both the “Access” and “Individuality” themes also had high frequencies

compared to the “Communication”, “Comprehensiveness”, and “Quality” themes, meaning they

were still significant yet not as frequently mentioned as the first two codes. Only one response fit

into the category of “Quality” as it mentioned improving the quality of transition services. The

researcher identified this theme as having little relative significance since only one response fit

into this category.

Conclusions

The objective of this paper was to determine which aspects of current transition projects

were most effective and accessible at this time, as indicated by parents of adults with autism.

After surveying 30 participants across the United States, the data revealed that out of mental and

physical health, health insurance, post-secondary education, employment, and housing services,

health insurance was the most effective component, post-secondary education was the most

accessible component, and housing was the least effective and least accessible component. The

most frequently reported reason for why the respondents found certain components inaccessible

was the knowledge that these transition services and programs existed. Most of the respondents

reported receiving transition services from their public school system. Regarding their

experiences with transition programs, the respondents generally liked the success of the services

and programs they received but disliked how inaccessible they were. The majority of

respondents suggested better support throughout the transition process.

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Limitations

One major limitation of this study was that the researcher could not directly survey

autistic adults. The original research design was to send the survey out to autistic adults since

they are directly affected by changes to transition programs. However, this design did not get

approved by the IRB. The researcher decided to survey the parents of these autistic adults

instead, figuring that they were the second most affected by changes to transition services.

Another limitation was finding a large enough sample to take the survey. The researcher reached

out to over 60 Facebook support groups, 20 transition service providers, and 52 Statewide

Independent Living Councils over the course of the study, yet still did not reach the desired

participant count. The researcher intended to have 40 participants complete the survey, as this

number was proportionate to the target population. Thirty respondents ended up completing the

survey, which was still enough to produce significant data. In retrospect, the instrument design

was also limited. The question that was intended to measure the effectiveness of transition

service components may have been misleading due to its mention of “satisfaction.” Further,

many respondents who said they did not receive certain service components still gave them

effectiveness and accessibility ratings rather than choosing the “N/A” option. The researcher

believes that the respondents who gave certain components the ratings of inaccessible or

unsatisfactory without having received them found these components inaccessible or

unsatisfactory because they did not receive them.

Implications

Overall, respondents were less than satisfied with their transition services and found them

inaccessible. In delving deeper into what elements are causing these low ratings, it is evident that
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mental health, physical health, health insurance, post-secondary education, employment, and

housing services all rated, on average, less than satisfactory and inaccessible. Transition services

are what help adults with autism and any other disability succeed in adulthood. If transition

services are not satisfactory or accessible to those who need them, they are inadequately

prepared for independence and therefore set up for failure. Using the aforementioned findings,

service firms and programs could acknowledge the gaps in effectiveness and accessibility and

address them accordingly in order to improve the overall quality of their services. A majority of

respondents further noted that the inaccessibility of transition services was mainly due to a lack

of knowledge about them. Since most respondents reported receiving services from the public

school system, it would be advised that communication between transition professionals and

students be improved in order to let them know about the resources available to them. Outside of

public schools, a database with available and appropriate services within an individual’s

geographic area would increase knowledge of transition services and programs. Changes and

improvements should focus on housing since it was rated the least effective and most

inaccessible component. As previously mentioned, transition programs should reconfigure their

services to become more effective and accessible for those who use them.

Directions for Future Study

In order to determine why certain services are ineffective or inaccessible, this study could

be replicated with interviews rather than surveys to gather why transition service stakeholders

hold these opinions. Further, the researcher suggests looking into the transition service providers

to find the relative accessibility and effectiveness ratings. With the findings from this study,

service providers would know how their users feel about the success of their programs, allowing

them to make changes and accommodations accordingly. Further research on any element within
 28

the topic of transition services would benefit the growing autistic population within the United

States, as transition service research is particularly lacking.

 29

References

Anderson, C., Butt, C., & Sarsony, C. (2020). Young adults on the autism spectrum and early

employment-related experiences: Aspirations and obstacles. Journal of Autism and

Developmental Disorders, 51(1), 88-105. https://doi.org/10.1007/s10803-020-04513-4

Brosnan, M. (2020). An exploratory study of a dimensional assessment of the diagnostic criteria

for autism. Journal of Autism and Developmental Disorders, 50(11), 4158-4164.

https://doi.org/10.1007/s10803-020-04474-8

Capriola-Hall, N. N., Brewe, A. M., Golt, J., & White, S. W. (2020). Anxiety and depression

reduction as distal outcomes of a college transition readiness program for adults with

autism. Journal of Autism and Developmental Disorders, 51(1), 298-306.

https://doi.org/10.1007/s10803-020-04549-6

Cardon, T., Bushman, K., Paulsen, M., & Westover, J. (2020). Housing and autism spectrum

disorder: Insights from individuals and families. Journal of the Utah Academy of

Sciences, Arts & Letters, 97, 145-168. http://www.utahacademy.org/

Centers for Disease Control and Prevention. (2020, April 22). Prevalence of autism spectrum

disorder among children aged 8 years—Autism and developmental disabilities

monitoring network, 11 sites, United States, 2016.

https://www.cdc.gov/mmwr/volumes/69/ss/ss6904a1.htm?s_cid=ss6904a1_w

Cernius, A. (2016). “No imbecile at all”: How California won the autism insurance reform battle,

and why its model should be replicated in other states. Harvard Law & Policy Review,

10(2), 565-596. https://hls.harvard.edu/

 30

Choi, K. R., Knight, E. A., Stein, B. D., & Coleman, K. J. (2020). Autism insurance mandates in

the US: Comparison of mandated commercial insurance benefits across states. Maternal

and Child Health Journal, 24(7), 894-900. https://doi.org/10.1007/s10995-020-02950-2

Coleman, D. M., & Adams, J. B. (2018). Survey of vocational experiences of adults with autism

spectrum disorders, and recommendations on improving their employment. Journal of

Vocational Rehabilitation, 49(1), 67-78. https://doi.org/10.3233/jvr-180955

Dudley, K. M., Klinger, M. R., Meyer, A., Powell, P., & Klinger, L. G. (2018). Understanding

Service Usage and Needs for Adults with ASD: The Importance of Living Situation.

Journal of Autism and Developmental Disorders, 49(2), 556-568.

Friedman, C., & Rizzolo, M. C. (2017). “Get us real jobs:” supported employment services for

people with intellectual and developmental disabilities in Medicaid home and community

based services waivers. Journal of Vocational Rehabilitation, 46(1), 107-116.

https://doi.org/10.3233/jvr-160847

Gerber, A. H., McCormick, C. E., Levine, T. P., Morrow, E. M., Anders, T. F., & Sheinkopf, S. J.

(2017). Brief report: Factors influencing healthcare satisfaction in adults with autism

spectrum disorder. Journal of Autism and Developmental Disorders, 47(6), 1896-1903.

https://doi.org/10.1007/s10803-017-3087-3

Gorenstein, M., Giserman-Kiss, I., Feldman, E., Isenstein, E. L., Donnelly, L., Wang, A. T., &

Foss-Feig, J. H. (2020). Brief report: A job-based social skills program (JOBSS) for

adults with autism spectrum disorder: A pilot randomized controlled trial. Journal of

Autism and Developmental Disorders, 50(12), 4527-4534.

https://doi.org/10.1007/s10803-020-04482-8
 31

Hosking, F. J., Carey, I. M., Shah, S. M., Harris, T., DeWilde, S., Beighton, C., & Cook, D. G.

(2016). Mortality among adults with intellectual disability in England: Comparisons with

the general population. American Journal of Public Health, 106(8), 1483-1490.

https://doi.org/10.2105/ajph.2016.303240

Hunsche, M. C., Saqui, S., Mirenda, P., Zaidman-Zait, A., Bennett, T., Duku, E., Elsabbagh, M.,

Georgiades, S., Smith, I. M., Szatmari, P., Ungar, W. J., Vaillancourt, T., Waddell, C.,

Zwaigenbaum, L., & Kerns, C. M. (2020). Parent-reported rates and clinical correlates of

suicidality in children with autism spectrum disorder: A longitudinal study. Journal of

Autism and Developmental Disorders, 50(10), 3496-3509.

https://doi.org/10.1007/s10803-020-04373-y

Lauer, E., & McCallion, P. (2015). Mortality of people with intellectual and developmental

disabilities from select US state disability service systems and medical claims data.

Journal of Applied Research in Intellectual Disabilities, 28(5), 394-405.

https://doi.org/10.1111/jar.12191

Liu, A. Y., Lacoe, J., Lipscomb, S., Haimson, J., Johnson, D. R., & Thurlow, M. L. (2018).

Preparing for life after high school: The characteristics and experiences of youth in

special education. Findings from the National Longitudinal Transition Study 2012.

Volume 3: Comparisons over time (Executive Summary) (NCEE 2018-4008).

Department of Education, Institute of Education Sciences, National Center for Education

Evaluation and Regional Assistance.

Mason, D., Ingham, B., Urbanowicz, A., Michael, C., Birtles, H., Woodbury-Smith, M., Brown,

T., James, I., Scarlett, C., Nicolaidis, C., & Parr, J. R. (2019). A systematic review of

what barriers and facilitators prevent and enable physical healthcare services access for
 32

autistic adults. Journal of Autism and Developmental Disorders, 49(8), 3387-3400.

https://doi.org/10.1007/s10803-019-04049-2

Nicolaidis, C., Raymaker, D. M., Ashkenazy, E., McDonald, K. E., Dern, S., Baggs, A. E., Kapp,

S. K., Weiner, M., & Boisclair, W. C. (2015). “Respect the way I need to communicate

with you”: Healthcare experiences of adults on the autism spectrum. Autism, 19(7),

824-831. https://doi.org/10.1177/1362361315576221

Sarrett, J. C. (2017). Autism and accommodations in higher education: Insights from the autism

community. Journal of Autism and Developmental Disorders, 48(3), 679-693.

https://doi.org/10.1007/s10803-017-3353-4

Schott, W., Nonnemacher, S., & Shea, L. (2020). Service use and unmet needs among adults with

autism awaiting home- and community-based Medicaid services. Journal of Autism and

Developmental Disorders, 51(4), 1188-1200.

https://doi.org/10.1007/s10803-020-04593-2

Shiozawa, B. J. (2014). It’s about time for autism reform legislation in Utah. Journal of Autism

and Developmental Disorders, 45(5), 1495-1496.

https://doi.org/10.1007/s10803-014-2302-8

U.S. Department of Health and Human Services. (2017, October). Report to congress: Young

adults and transitioning youth with autism spectrum disorder. HHS.gov.

https://www.hhs.gov/sites/default/files/2017AutismReport.pdf

Van Hees, V., Roeyers, H., & De Mol, J. (2018). Students with autism spectrum disorder and

their parents in the transition into higher education: Impact on dynamics in the

parent–child relationship. Journal of Autism and Developmental Disorders, 48(10),

3296-3310. https://doi.org/10.1007/s10803-018-3593-y
 33

Appendix A

Survey Informed Consent Form

I would like to start by thanking you for your participation in this survey.

The purpose of this survey is to determine the most effective and accessible aspects of current
transitional programs for autistic individuals transitioning to adulthood to form more
comprehensive programs in the future.

Please know that:

Your survey responses, along with the responses of other participants, will be used to help the
researcher complete a research study that evaluates the relative accessibility and effectiveness of
current transitional programs. Also, your responses will help provide a baseline for more
comprehensive services in the future. Some of the questions may be repetitive to establish
context for upcoming questions or to ensure consistent responses.

The researcher, Skyler Wansky, is an AP Research student enrolled in the AP Capstone program
at Lassiter High School.

Your participation in this survey is completely voluntary. You may choose to stop the survey at
any time if you feel uncomfortable, and there will be no penalty whatsoever for choosing to do
so. If you do not wish to answer one of the required questions, there is an option you may choose
labeled “I do not wish to answer.”; however, it would be helpful for you to answer as many
questions as you are able and willing to answer.

All responses are confidential. Your identity is only known to me, and no names or other
personal identification will be collected as part of the survey. If one of your short answers is used
in the researcher’s report, non-identifying qualifiers such as “a respondent” will be used.
Typically, findings are reported in group form, so no individual is identifiable.

There are no direct benefits to you anticipated from your participation; however, the information
you provide will potentially benefit future autistic adults in terms of the services they receive.
We believe there are no known risks associated with this study. There may be uncommon or
previously unforeseen risks. You should report any problems to the researcher.

Since the survey exists only online, the responses and the survey itself will be deleted upon the
publication of the researcher’s academic paper.
A discussion of findings from this study will be available to all participants after the research is
concluded and will be sent out via email to participants. If interested, please seek information
pertaining to the results of the study in the subsequent follow-up email from the researcher.

If you have questions about this research study or any research-related problems, you may
contact the researcher, Skyler Wansky, or faculty advisor, Todd Henry, listed below.
 34

Contact Information:
PRINCIPAL INVESTIGATOR: Skyler Wansky
EMAIL: [email protected]
SUPERVISING FACULTY: Todd Henry DEPARTMENT: English
EMAIL: [email protected]

If you wish to participate, please print out and sign the consent form, then scan it and email it
back to the researcher through the email above.

Participant Agreement:
I have read the information provided above. I have asked all the questions I have at this time. I
have been given a copy of this informed consent statement to take with me. I voluntarily agree
to participate in this research study.

________________________________ ________________________
Signature of Participant Date

________________________________
Printed Name of Participant
 35

Appendix B

1)Where did your son/daughter receive aid upon transitioning to adulthood (select one)?

Public school
Non-public school (charter, Montessori, religious, boarding)
Private special education school
Government-funded program(s)
Private/Non-profit program(s)
I do not wish to answer
Other (please specify):

2) What types of transitional aid did your son/daughter receive upon graduating high school
(select at least one)?

Mental health
Physical health
Health insurance
Post-secondary education
Employment
Housing
I do not wish to answer
None of the above

3) How satisfied was your son/daughter overall with his/her transitional services?

Very Unsatisfied Neutral Satisfied Very Satisfied N/A

Unsatisfied

Mental Health

Physical
Health

Health
Insurance

Post-secondary
Education

Employment
 36

Housing

4) How accessible were the transitional services?

Very Inaccessible Neutral Accessible Very N/A

Inaccessible Accessible

Mental Health

Physical
Health

Health
Insurance

Post-secondary
Education

Employment

Housing

5) If you put "Inaccessible" or "Very Inaccessible," what was the reason (select at least one)?

Affordability
No knowledge of existence
Distance
I do not wish to answer
N/A
Other (please specify):

6) What aspects of transitional services did your son/daughter like/dislike? Please explain.
 37

7) Any suggestions for future transitional services for young autistic adults?