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Barriers to accessing support services in employment and health care for adults with autism spectrum disorders: a qualitative study

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Barriers to accessing support services in employment and health care for adults with autism spectrum disorders: a qualitative study

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Content Running head: SUPPORT ACCESS BARRIERS ADULTS WITH ASD 1
BARRIERS TO ACCESSING SUPPORT SERVICES IN EMPLOYMENT AND
HEALTH CARE FOR ADULTS WITH AUTISM SPECTRUM DISORDERS:
A QUALITATIVE STUDY

by

Ardail Rashad Henry

A Dissertation Presented to the
FACULTY OF THE USC ROSSIER SCHOOL OF EDUCATION
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
DOCTOR OF EDUCATION

December 2013

Copyright 2013 Ardail Rashad Henry

SUPPORT ACCESS BARRIERS ADULTS WITH ASD 2
Dedication
This work is dedicated to the following: To my family whose love and support has lifted
me up through every struggle. To all those whose families are touched, challenged, and
blessed by a child with autism - your courage and patience as you seek to nurture the gift
that is your child is an inspiration. To all the civil rights workers whose aim it was to
open doors so young, gifted, and black, brown and poor children could become Doctors,
or whatever else their willing hearts would dare to dream, this is for you. Here I stand.
And to my mother,
Gwendolyn Maxine Henry, who made me believe that, through education, all things were
possible. You were right.
And to the students and staff of classroom 114 at Belmont High School in Los Angeles,
who “believe in the creation of inspired lives, produced by the miracle of hard work”.

SUPPORT ACCESS BARRIERS ADULTS WITH ASD 3
Acknowledgements
This work would not have been possible without the unfailing loving support of
some very special people in my life. My mother, my sisters Nicole and Lisa who never
doubted that I would find a way, my nephews Malik Rashad, Kobe Khalil, and Damarco
White, who are the unknowing inspirations for all my lofty goals and dreams, my Uncle
Butch and Aunt Leslie who teach me the value of humility and respect for all, my brother
Charles whose wisdom and encouragement will always remind me, “if the elevator to
success is broken, take the stairs”, to all my cousins, aunts and uncles, but particularly my
cousin Shaka Owens, who was the very first person to tell me I shouldn’t settle for a
Master’s - “get the doctorate”. June - thanks for looking after my mom. I would also like
to acknowledge the young men and young women of Central Juvenile Detention Facility
in Los Angeles whom I worked with these few years and who have inspired me to me
“do good”. Every day. And all the youth, men and women across this nation who are
incarcerated, have learning disabilities, or seek to better your lives through education.
You are not forgotten. I would like to acknowledge Dr. Suzy Klyman for her unwavering
support and encouragement all these years, Jorge and Isabel Flores for opening your
beautiful home and hearts, keeping me safe and loved, and Carmen Vazquez for opening
her heart so something as beautiful as we have created together could fill it.
“The Office” crew off Crenshaw, Tony and Dell for their prayers and love, Will J., the
Ortiz family, Dana, Gene, Amy Beth, Greg, and all my swimming buddies back home.
I would also like to thank my committee members- Dr. Pat Tobey, Dr. Alan Green, and
Dr. Emilio Pack. You pushed me to be the best student I’ve ever been - and you have
succeeded. Eliza Mae, Pluncy Henry, James Wheeler, and Ethel Sills, we did good.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 4
Table of Contents
Dedication 2

Acknowledgements 3

List of Tables 7

List of Figures 8

Abstract 9

Chapter One: Introduction 10
Background of the Problem 13
Statement of the Problem 18
Purpose of the Study 19
Methodology 20
Overview of Theoretical Frameworks 21
Importance of the Study 22
Limitations 23
Definitions and Terms 24

Chapter Two: Literature Review 29
Employment 31
Access barriers to employment support services for adults with autism 31
Lack of information regarding available services 34
Poor transition planning from high school 36
Misaligning eligibility requirements across local, state, and federal programs 39
Disincentive to look for work for low-income households 41
Health Care 43
Environmental barriers 45
Structural barriers 48
Process barriers 56
The Concept of a Social Capital Framework 59
Aday and Andersen Health Care Access Framework 60
Summary 61

Chapter Three: Research Methodology 63
Approach 64
Research Questions 64
Hypotheses 64
Frameworks Related to Method 65
Population and Sample 66
Instrumentation 68
Data Collection 69
Data Analysis 72

SUPPORT ACCESS BARRIERS ADULTS WITH ASD 5
Chapter Four: Findings 73
Participants 74
Interview 1: OG 82
Employment barrier themes 82
Health care barrier themes 88
Social capital network barrier themes 93
Summary of Interview 1: OG 94
Interview 2: OG2 (son of OG) 95
Employment barrier themes 96
Health care barrier themes 101
Summary of Interview 2: OG2 103
Interview 3: Dr. H 103
Health care barrier themes 104
Social capital network barrier themes 116
Summary of Interview 3: Dr. H. 119
Interview 4: Sofia (daughter of SC) 120
Employment barrier themes 121
Social capital network themes 124
Summary of Interview 4: Sofia 125
Interview 5: SC (father of Sofia) 126
Health care access barrier themes 126
Social capital network barrier themes 127
Summary of Interview 5: SC 130
Interview 6: Eddie 130
Employment barrier themes 131
Summary of Interview 6: Eddie 140
Interview 7: AH 141
Summary of Interview 7: AH 145
Reflection on Findings 146

Chapter Five: Conclusion 149
Summary of Findings by Research Question 150
Findings regarding Research Question One 150
Findings regarding Research Question Two. 152
Findings regarding Research Question Three. 158
Limitations 159
Recommendations for Practice 160
Recommendations for Research 165
Conclusion 168

References 170

SUPPORT ACCESS BARRIERS ADULTS WITH ASD 6
Appendices
Appendix A: Interview Protocol for Individuals with ASD 179
Appendix B: Interview Protocol for Caretakers of Adults with ASD 182
Appendix C: Research Question Matrix 185
Appendix D: Photograph, Audio & Video Release Form 196
Appendix E: Audio/Video Recording Consent Form 198
Appendix F: Informed Consent for Non-Medical Research 199

SUPPORT ACCESS BARRIERS ADULTS WITH ASD 7
List of Tables
Table 1: Participant Social Capital Matrix 78
Table 2: Health Care Matrix 81

SUPPORT ACCESS BARRIERS ADULTS WITH ASD 8
List of Figures
Figure 1: Aday & Andersen (1974) Access to Health Care Framework 80
Figure 2: Institutional Agent Framework, Stanton-Salazar 81

SUPPORT ACCESS BARRIERS ADULTS WITH ASD 9
Abstract
Background: There is little available empirical study on adults with autism
spectrum disorders (ASDs) as a research group. Although some research exists on
interventions for employment and employment supports, much less empirical study has
been conducted on health care related issues in the adult autism community. Purpose:
The purpose of this study was to identify perceived barriers to employment supports and
health care access for adults with autism and to determine if the activation of social
capital networks has any influence on successfully accessing these resources. Method:
Seven qualitative interviews were conducted for the study. Five interviews were
conducted with adults with ASDs. Two interviews were with family members who were
conservators of an adult with ASD. Results: With respect to employment, adults with
ASD lack 1) frameworks for transitioning out of high school and into the employment
world of adulthood, 2) exposure to job experiences in high school, beyond low-wage
paying skills and 3) training in “soft skills” like interviewing and portfolio building. With
regard to health care, a lack of national policy with equity of access standards exists for
the adults with ASD community and limited options for service providers also persist.
Conclusion: Research should be conducted to determine specific health care costs
associated with autism in order to develop relevant national policy frameworks.
Additionally, more employment support services should be created and made available to
the adult population of people with ASDs. With regard to social capital networks, higher
socio-economic status creates more access points to health care and employment support
services at the local community level but has more limited success at the state and federal
levels.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 10
Chapter One: Introduction
Socially, there are many things that, as adults, we take for granted on a daily
basis; delighting in another’s polite smile, acknowledging someone else’s presence
without anxiety or frustration by saying “Hello”, or the simple recognition that having
friends in the journey through life makes an incredible difference in its quality and value.
However, for those with autism, or an Autism Spectrum Disorder (ASD), these assumed
“simple pleasures” are not so easy to come by. More often than not, experiences such as
these must be specifically taught, strictly reinforced, and programmed to a level of
automaticity that “typically” functioning adults scarcely comprehend, making each of
these experiences a victory that is hard won for these individuals. As hard fought as these
“simple” social practices can be for a young person with an ASD, it is even more difficult
for an adult to secure and maintain employment for lifetime of non-dependence or to
access the necessary health care to live a full and less-burdensome life. Accessing related
services in employment and health care for an adult with an ASD can be complex,
expensive, and extremely frustrating due to the minimal amount of options for services
available. For these reasons, this study sought to determine what the perceived barriers to
access are in the areas of employment and health care for adults with an ASD or for those
who may care for them.
Autism is a neurodevelopmental disability characterized by a range of deficits in
three primary areas: social functioning, communication, and rigid ritualistic interests
(Gabriels & Hill, 2007; Grandin, 2004; Lord & Bishop, 2010). Core deficits in
communication can affect all aspects of social functioning, though manifestations of the
neurologically-based disorder are unique in every individual. Difficulty navigating the
nuances of social behavior makes it problematic to make friends or keep a job while strict
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 11
adherence to routines or infatuations with specific items or phrases can make a person
with an ASD seem “awkward” or “weird”, and may even cause behavioral outbursts
(Gabriels & Hill, 2007).
Autism is four times more prevalent in boys than in girls and has been identified
in individuals from all racial, ethnic, family, social, income, and educational level groups
(Grandin, 2004). The condition of an Autism Spectrum Disorder (ASD) is thought to be a
permanent developmental disorder, creating life-long challenges for the individual
(Hendricks & Wehman, 2009; Hendricks, 2010). Seltzer, Shattuck, Abbeduto, and
Greenberg (2004) find that, even though there can be improvements in characteristics of
the core behaviors in adolescence and adulthood, functioning does not typically reach
standards for general society, and significant deficits persist over the course of the
lifetime for most. Therefore, it can be very difficult for an adult with an ASD to find a
job, keep a job, or, better yet, find a job that takes advantage of the skill set within the
individual which may be his/her “strong suit” to highlight his/her ability to contribute to
the workforce. Social difficulties can also make it difficult for persons with an ASD to
express themselves fully to health care workers such as doctors and nurses in order for
them to receive the most effective or preventative care.
The prevalence of autism has increased dramatically in recent years. Estimates by the
Centers for Disease Control (CDC) indicate that 1 in 50 births are children with an ASD
(CDC, 2012) and data from the United States Department of Education indicate that the
number of children six through twenty-one diagnosed with autism served under IDEA
(Individuals with Disabilities Education Improvement Act) increased by more than 500
percent in the last decade (Government Accounting Office, 2005). The U.S. Department
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 12
of Education (USDOE) identifies autism as the fastest growing low incidence of
disability in the United States (Ruble & Heflinger, 2005). However, the majority of
research and intervention efforts focus primarily on young children with far less attention
being given to when these children become adults (Hendricks, 2010; Pivens & Rabin,
2011. The increase in prevalence over recent decades presents questions with dramatic
implications for this rapidly increasing population: What will happen to this large and
swelling population of youths with an ASD who later become adults with an ASD? If
they exit public schools without adequate social and employment skills, how will they
find the jobs by which to support themselves financially? If they are unable to support
themselves or take care of basic needs, will they be able to access important services such
as health care, which can mean major quality of life differences in mental and physical
well-being?
Although significant strides have been made in early intervention efforts for
children with ASD — assessment, early identification, behavior analysis training, etc. —
equally significant strides in establishing and promoting programs that assist adolescents
and adults with ASD to become productive members of society have not been made
(Lord & Bishop, 2010). An additionally daunting problem for these children with ASD
who later become older, and adult-size, is the likelihood their impairments will become
more complex as the functional requirements of daily living reach a higher standard of
expectation and social functioning (Gabriels & Hill, 2007). Assistance in accessing
appropriate healthcare as well as assistance in gaining employment-related skills would
be a great boon to the autism community in making strides towards more independence
and an improved quality of life.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 13
The federal Individuals with Disabilities Education Improvement Act of 1997
(IDEA, 1997) allows persons with disabilities to receive free services from a public
school district until they graduate, or until they age out of the school system at twenty-
two years of age (IDEA, 2004). Upon exiting the school system, families are essentially
“on their own” in identifying, accessing, and securing the support services necessary to
bridge the transition into adulthood. Though research into the transition into adulthood is
limited, some research points to disparities in service use associated with race, residence,
and education (Shattuck et al., 2011; Thomas, Ellis, McLaurin, Daniels, & Morrissey,
2007) Because a range of services can be necessary to compensate for the unique and
varied symptoms of autism in individuals, identifying what services are available and
how to go about overcoming the barriers to securing services are essential tasks for
families who care for adults with autism and for the individuals themselves.
The focus of this study was, therefore, to identify the challenges and barriers to
accessing adult support services in the areas of employment and health care for a person
with an ASD and for families, or other caretakers of an individual with an ASD, who are
responsible for the individual’s primary care.
Background of the Problem
The Centers for Disease Control and Prevention (CDC) estimates that, presently,
there may be upwards of 730,000 people between the ages of 0 and 21 with an ASD
living in the United States (CDC, 2012). This statistic represents a large number of
children with the disorder, but this number also represents two additional realities: 1)
there is a large contingent of individuals with ASD in this number who are over the age
of eighteen, and 2) those who are not yet eighteen will one day be so. Thus, a tide is
rising. Shattuck et al. (2012) find that each year in the United States, 48,500 teens with an
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 14
ASD reach their eighteenth birthday. Additionally, Ganz (2007) indicates that it can
potentially cost $3.2 million to take care of a person with autism over his or her lifetime.
Therefore, the statistical number of people with autism also represents a considerable
price tag for families as well as tax payers who make up costs that families are unable to
shoulder on their own.
Change is a major theme with regard to the types and amount of support services
available when children with autism become adults with autism (Gabriels & Hill, 2007).
Transition from school to adult services can be a most difficult process for youth with
ASD and their families in key life areas such as education, community living, community
integration and employment (McDonough & Revell, 2010). Mandated within IDEA
(2004) legislation is a provision for a Free and Appropriate Program of Education
(FAPE) for children in the public school system. This provision allows for services to be
coordinated and paid for by public schools as an entitlement under federal law. However,
once a student graduates or exits the public school system by 22 years of age as mandated
by IDEA, all such one-stop shop coordination of services and free access to services
stops (Wehman, Smith & Schall, 2009). At this point, upon exit from public schools,
families who care for someone with an ASD, and often individuals with an ASD
themselves, are essentially “on their own” in locating, securing, and financing support
services at the local, state, and federal levels, which is a daunting task for anyone from
any background.
As students leave the safety net that has been the public educational system, post-
school services may be necessary to encourage personal and professional development
(Hendricks & Wehman, 2009). Professionals and therapeutic services may no longer be
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 15
easily accessible or provided within a coherent network (Hendricks & Wehman, 2009) as
they are within the public school system. The National Institute of Mental Health reports,
“The termination of eligibility and availability of school-based services is particularly
problematic for those with disorders that require intensive services that are principally
delivered through educational settings, such as youth with autism spectrum disorders”
(Shattuck & Wagner, Narendorf, Sterzig, & Hensley, 2011, p. 142). Finding agencies
and offices which provide adult services, and finding the means to pay for them, can
prove difficult.
Access to adult services for individuals with an ASD, as well as for family and
primary caretakers who are responsible for these individuals, is extremely limited
(Sullivan, 2001). In fact, exiting high school is associated with a steep decline in service
receipt as an adult (Shattuck & Wagner et al., 2011). Employment, day, community, and
residential needs of these individuals continue to heavily outweigh available resources for
this diverse community (Gerhardt & Lainer, 2011). This is leaving a generation of people
with autism and their families to face complex programming, financial, and personal
issues related to the symptoms of autistic functioning (Gerhardt & Lainer, 2011). Indeed,
researchers find parents of youth with autism are more likely than those in other disability
categories to indicate barriers to obtaining services for their sons and daughters (Levine,
Marder & Wagner, 2004). For example, whether a condition is considered primary or
secondary with regard to the label of diagnosis has fueled debates with insurance
companies over medical versus financial coverage of treatment when people with autism,
often covered under their insurance as a medical condition, begin to exhibit psychiatric
symptoms outside the DSM-IV definition of autism (Gabriels & Hill, 2007). An
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 16
additional challenge to obtaining services may be the swelling numbers of people with
autism on state and federal disability rolls. For example, in California, the number of
people with autism served by the Department of Disability Services (DDS) increased 283
percent since 2000 (Gans, Davis, Kinane & Kominski, 2011). With more people
requiring services, the availability of service options must keep pace.
Moving from the public education system to the adult service system also
involves learning about new community resources, where each new service or support
system has a unique set of agency rules, regulations, eligibility guidelines and procedures
(Wehman, Smith, & Schall, 2009). Often, these federal, state, and local agencies which
provide services have conflicting criteria for eligibility at their respective offices, making
the entire process even more difficult to manage (Wehman, Smith, & Schall, 2009).
Levine, Marder and Wagner (2004) found that service information, availability, and
quality were the three most cited obstacles to obtaining services by families of youth with
disabilities. Though there is little evidence to support or deny the influence that social
capital networks have on access to support services, because studies have not looked at
the issue empirically, anecdotal reports through national news agencies and disability
office annual reports indicate that there are serious discrepancies across racial and ethnic
backgrounds in the areas of services available, and funds spent on a youth of a particular
racial or ethnic background (Zarembo, 2011, para. 9)
Chakrabarti and Fombonne (2005) stated, “The behavioral, emotional, and
dependency issues of this population are likely to become of paramount concern for
communities as the increasing numbers of identified children with autism grow up”. If
people with an ASD are unable to manage their life needs, specifically with regard to
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 17
employment and health care, then they are likely to engage in some form of a dependent
relationship. This dependence could manifest itself as reliance upon family, state, or
federal assistance. In keeping with this dependence, if these individuals are unable to take
care of themselves financially, then they must be expected to depend upon someone else.
Children with an ASD differ as to the degree of impairment in core diagnostic
symptoms: social, communication, and behavioral (Gabriels & Hill, 2007). With regard
to communication deficits, approximately 50% of individuals with an ASD lack a form of
functional communicative speech (Happe & Frith, 1996). Without a form of functional
speech, not only do the prospects of tenable employment diminish, but the likelihood of
delivering appropriate medical care to the individual diminishes as well. If doctors or
other medical staff are unable to know what specific health issues need to be addressed,
they cannot properly deal with them. “Assessing and diagnosing [sic] behaviors can be
particularly difficult, given that many of these children lack the cognitive capacity
necessary to report internal physical or emotional experiences and have few or no
communication skills” (Gabriels & Hill, 2007, p. 3). Though this quote references
children with autism, an assumption can be made that this same difficulty applies as they
grow into adolescence and adulthood.
When outside factors are considered, like a new definition of autism within the
DSM-V in 2013, the implications of what may or may not be financially covered under
an insurance policy are significant. In addition, most of the legislation to provide
coverage for autism was enacted in the four years prior to this study and varies widely
from state to state (Insurance Coverage, 2012). When significant cost burdens are
weighed with regard to whether or not an individual, or a caretaker of someone with an
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 18
ASD, decides whether s/he should try to obtain a service, this person potentially makes a
decision between needed care and financial stability.
Statement of the Problem
Any adult with an ASD attempting to access support services available to him/her
has the potential to secure services from a constellation of community training,
employment, and support programs (Wehman, Smith, & Schall, 2009). These programs
offer different kinds of service coordination, employment services, and funding
possibilities; however, securing their services can involve many different and complex
systems at the community, state, and federal levels. Access barriers to adult services for
someone with an ASD can exist in many forms in the areas of employment and health
care. For example, while in K-12 education, services are mandated by federal legislation
(IDEA) and schools serve as clearinghouses of information regarding available services
(Wehman & Schall, 2009), but, once students exit the school system, no such
clearinghouses of information exist, and individuals and/or their caretakers are essentially
“on their own” in discovering information regarding adult services.
Other major barriers to acquiring support services for adults with autism include a
lack of information regarding services; poor coordination of transition services from high
school to the adult world; conflicting eligibility requirements for federal, state, and local
agency offices; the unavailability of services; the absence of qualified staff to work with
adults with an ASD; and changes in the medical DSM-V definition of what characterizes
an Autism Spectrum Disorder and how that relates to what is or is not covered under an
insurance policy. Each of these issues may act as a barrier to attaining support services.
Therefore, each of these stated issues presents unique challenges to accessing needed
services for caretakers of someone with an ASD.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 19
Some research indicates that families with financial means do a better job of
breaching these barriers to services and securing access to needed supports such as
vocational training, medical services, and supported living arrangements (Shattuck, et al.,
2011). Other data point to success rates in securing these services differing across racial,
ethnic, and socio-economic lines whereby social capital network influences may be
determined to be significant factors (Zarembo, 2011, para. 9). The aim of this study was,
therefore, to determine what barriers exist as the major inhibitors of acquiring support
service for adults with an ASD in the areas of employment and health care. A sub-focus
was to determine if differences in social capital networks affect success rates in acquiring
these needed services.
Purpose of the Study
The purpose of this study was to explore the quality of knowledge regarding
barriers to employment and health care support services for adults with an Autism
Spectrum Disorder. The focus of the study was to determine what the major barriers are
when adults with ASD, or caretakers of an adult with an ASD, attempt to acquire these
services. A parallel purpose was to improve the quality of knowledge on how social
capital networks do or do not make a difference in acquiring support services in
employment and health care for the individual. Identifying the barriers in acquiring
support services for adults with ASDs may assist in creating strategies that can be useful
in overcoming them. Developing strategies to overcome barriers in acquiring support
services may help adults with ASDs engage in fuller, more independent, and dignified
lives. Therefore, the aim of this research was to participate in establishing baseline
criteria for equity of access standards for those of all backgrounds who love and care for
someone with autism.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 20
A sub-focus focus of the study was to learn whether differences in social capital
networks affect the success rates in acquiring these needed services.
Three Research Questions guided this study:
1. What perceived barriers exist in acquiring support services for adults with an
Autism Spectrum Disorder in the area of employment?
2. What perceived barriers exist in acquiring support services for adults with an
Autism Spectrum Disorder in the area of health care?
Does the activation of social capital networks influence success rates of obtaining
support services in employment and health care?
Methodology
This is a qualitative research study based on interviews with adults with an
Autism Spectrum Disorder (ASD) or caretakers who are responsible for securing support
services for an adult with an ASD. Participants were chosen based on the criteria of: 1)
being an adult 18 or older having a medical diagnosis of an ASD, or a caretaker of an
adult with an ASD; 2) having exited the public school system where s/he had an IEP
(Individual Education Program), was provided support services, and where support
services are no longer provided as entitlements under IDEA (2004); 3) being in the
process of attempting, or have attempted in the past, to acquire support services in
employment or health care, and 4) having varying degrees of social capital which will be
identified at low, moderate, or high levels.
Overview of Theoretical Frameworks
The social capital framework (Stanton-Salazar, 2010) is utilized to understand the
relationship between socio-economic factors and the ability to mobilize network
connections based on the volume of the capital. Social capital can be “(economic,
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 21
cultural, or symbolic) possessed in his own right by each of those to whom he is
connected” (Bordieu, 1986) and can be leveraged to overcome barriers when attempting
to access support services for adults with ASDs. Social capital is defined as “a resource
that actors derive from specific social structures and then use to pursue their interests; it
is created by exchanges in the relationship among actors” (Baker, 1990, p. 619).
Participating in the exchange of social capital allows one or both of the parties in the
relationship to gain access to resources. These resources can provide knowledge and
assets which allow access to higher degrees of education, career, and social advancement
(Stanton-Salazar & Dornbusch, 1995). Within this study, the framework of social capital
is used as a lens to understand how knowledge and resources are manipulated among
those with more varied personal networks, such as those who possess higher volumes of
social capital, to overcome access barriers to limited amounts of specialized support
services for adults with ASDs.
Another framework used to conceptualize this study is that of the Aday and
Andersen (1974) health care framework. This framework is based upon a structure of five
inter-woven aspects of the development and delivery of medical care: 1) health policy; 2)
characteristics of the health delivery system; 3) characteristics of the population at risk;
4) utilization of health services; and 5) consumer satisfaction. This framework is
designed with the idea that health care access begins at the health policy level, indicating
that the delivery system, as well as the population at risk (aspects 2 & 3) are inputs which
lead to the outputs of service utilization and consumer satisfaction (aspects 4 & 5). The
framework is fluid in that the aspects moving back and forth among the different
elements. This framework was chosen because it conceives the entry point of health care
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 22
access as health care policy, which this study aimed to inform in documenting the health
care experiences of adult consumers with ASD about whom very little is known.
Importance of the Study
Identifying strategies to overcome barriers in acquiring support services will help
adults with ASDs lead lives that are full, independent and dignified. Therefore, this study
has significance for several reasons. First, there is a dearth of research with regard to
ASDs and their impact on individuals in the adult phase of life (Pivens & Rabin, 2011;
Wehman, Smith & Schall, 2009). Second, employment numbers for adults with autism
are grim. The Bureau of Labor Statistics indicates that approximately eight in ten adults
with a disability were unemployed in 2011 (Bureau of Labor, 2011), while research also
indicates that, specifically regarding those with autism, only six percent of people with an
ASD have a full-time job (Holmes, 2007).
Another reason this research is important is that very little is known about the
healthcare costs associated with adult autism, and quantifying these costs could lead to
more effective insurance programs, reducing major financial burdens on families of
individuals with ASDs (Leslie & Martin, 2007). Additionally, as the numbers of those
identified with ASDs increase, and their health care costs increase as they age, financial
burdens are not to be shouldered by families alone. The average cost of services for an
adult with autism was 254 percent higher than the cost for a child without autism (Blue
Ribbon Transition Commission, 2006, p. 3), so finding effective ways to manage these
costs is important for the financial security of all families and persons affected.
Finally, without added research into how support services can aid in the lives of
adults with ASD, society will likely miss opportunities for these individuals to contribute
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 23
to society through competitive and supported employment, and to greatly improve their
quality of life.
Limitations
There are limitations that influence outcomes of this study. First, without a robust
sample size, one that collects statistically significant data from both diverse socio-
economic backgrounds and racial/ethnic identifications, generalizable results from the
study cannot be determined. Second, one of the barriers to services explored in this study
is the new autism classification based on revisions to the Diagnostic and Statistical
Manual of Mental Disorders-V (DSM-V), the manual by which autism classifications are
diagnosed and identified. This new and revised edition of the DSM will mean some
individuals previously identified as being on the autism spectrum specified by the DSM-
IV-TR classifications will no longer be classified as autistic. Because the reclassification
is new and empirical studies on how the new identifications of autism are limited, an
accurate picture of those who would no longer be deemed as an adult with autism is
difficult to produce. Not having the medical diagnosis as deemed by the new criteria in
the DSM-V may affect their access to health insurance and employment support services.
A third limitation to the study is the lack of available research on issues as they relate to
adults with ASDs. Without being able to draw on ample literature that addresses issues as
they relate to the population, the topics of conversation which engage empirical research
are truncated at times to little more than conjecture. Third, one of the research questions
of this study deals with the prospect of accessing social capital networks and seeks to
study whether or not utilizing social capital within these networks will have any effect on
success rates of securing support services. Levels of social capital are outlined as low,
middle, and high, yet there is no empirical tool to quantify levels of social capital.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 24
Therefore, some variance from one study to another can and may be present in how levels
of social capital were defined and quantified. Also, because some access barriers to
support services deal with eligibility criteria for state and federal insurance programs,
there are some areas of support services, such as Medicaid and Social Security
Supplemental Security Income (SSI) eligibility, on which no level of social capital will
likely bear any influence regarding whether or not that support service will be accessed.
Definitions and Terms
Access - use of services relative to actual need for care; a lack of access occurs when a
need for service exists but the services are not utilized (Scheer, Kroll, Neri, & Beatty,
2003).
Americans with Disabilities Act of 1990 - Public law 101-336, United States Code
12101 et seq. Establishes a clear and comprehensive prohibition of discrimination on the
basis of disability. http://www.eeoc.gov/eeoc/history/35th/thelaw/ada.html, Retrieved
January 26, 2013.
Autism Spectrum Disorder (ASD) - In both the DSM-IV (American Psychiatric
Association, 1994) and the International Classification of Disease-10 (ICD-10, World
Health Organization, 1993), Pervasive Developmental Disorders is a diagnostic umbrella
classification for “autism-like” disorders. These include Autistic Disorder, Asperger
Syndrome, and Pervasive Developmental Disorder - Not Otherwise Specified. The
varying subtypes can be differentiated by age and type of onset, severity of symptoms,
and association with language delays and intellectual disability (Lord & Bishop, 2010).
Autism - a neurological disorder that compromises personal functioning in three core
areas: communication (both verbal and non-verbal), social interactions (initiating and
ending conversations, empathy, understanding body language and unspoken
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 25
communication tools such as eye-contact, etc), and repetitive behaviors (compulsions
with routines and schedules, compulsions with items or themes, finger-flicking, body
rocking, spinning, or making repetitive sounds, etc) (Gabriels & Hill, 2007).
Barrier to Access - factors which contribute to preventing a person from utilizing a
service when needed (Scheer et al., 2003).
Developmental Disabilities - a group of conditions due to an impairment in physical,
learning, language, or behavior areas.
http://www.cdc.gov/ncbddd/developmentaldisabilities/index.html
Disability Literacy - specific knowledge and skill set enabling health-care providers and
administrators to respond more appropriately to the needs of individuals with disabilities
(Scheer et al., 2003)
Diagnostic and Statistical Manual of Mental Disorders (DSM) - The DSM is the
standard classification of mental disorders used by mental health professionals in the
United States. It is intended to be useful in a wide array of contexts and used by clinicians
and researchers of many different fields of study (e.g., biological, psychodynamic,
cognitive, behavioral, interpersonal, family/systems). The DSM consists of three major
components: the diagnostic classification, the diagnostic criteria sets, and the descriptive
text. http://www.psychiatry.org/practice/dsm, retrieved January 26, 2013
Environmental Barriers - A barrier to support service access that deals primarily with
either the physical outlay of buildings where services may be obtained, or the process of
reaching the location where services may be obtained, such as transportation, a lack of
ramps to enter/exit a building, or equipment accessibility (Scheer, 2003).
Incidence - the number of new cases occurring in a given time (Standifer, 2011).
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 26
Individuals with Disabilities Education Improvement Act (IDEA) - Public Law 108-
446; The Individuals with Disabilities Education Act (IDEA) is a federal law that secures
special education services for children with disabilities. The law secures services from
the time children with disabilities are born until either they graduate from high school, or
until 22 years of age, when they must exit the public school system. The law was
reauthorized by Congress in 2004, prompting a series of changes in the way special
education services are implemented. http://www.ldonline.org/features/idea2004,
Retrieved January 26, 2013.
Individualized Education Program (IEP) - The term IEP means a written statement for
each child with a disability that is developed, reviewed, and revised in a meeting in
accordance with 34 Code of Federal Regulations 300.320 through 300.324, and that must
include present levels of student performance, a statement of measurable annual goals,
ways in which the program meets the needs of the child as a result of his/her disability
with the intent of including the child in the general education curriculum as much as
possible, a plan to meet all other related educational needs, and a description regarding
how the child’s movement toward meeting measurable annual goals is progressing.
http://idea.ed.gov/explore/view/p/%2Croot%2Cdynamic%2CTopicalBrief%2C10%2C
Retrieved January 26, 2013.
Institutional Agents - individuals who have the capacity, means, and commitment to
transmit, directly or indirectly, institutional resources and opportunities. These societal
agents act on behalf of others, including groups, who share similar attributes, positions of
status, and social backgrounds (e.g university alumni, professional teammates, and
leadership of upper-middle class associations); this networking operates on a context of
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 27
societal and institutional exclusion and inclusion (e.g., networks which correspond to
residential and occupational segregation by class, race, and gender) (Stanton-Salazar,
1997; Stanton-Salazar, 2010).
Integrated Employment - a program which teaches vocational skills and provides
support in securing employment, (Butterworth, et al., 2011, p. 30).
Prevalence - the number of cases of a disorder in the population in a given time
(Standifer, 2011).
Process Barriers - obstructions to support service access which inhibit service delivery
that have more to do with the service provider agent, or factors which deal with an
“untimely service delivery” (Scheer, 2003).
Related Service - related services help children with disabilities benefit from their
special education by providing extra help and support in needed areas such as speaking or
moving. Related services can include, but are not limited to, speech-language pathology
and audiology services, counseling services, including rehabilitation counseling, parent
counseling and training (IDEA, 2004).
Social Capital - “the aggregate of the actual or potential resources which are linked to
possession of a durable network of more or less institutionalized relationships of mutual
acquaintance and recognition” (Bordieu, 1986, p. 248).
Social Security Income - Supplemental Security Income (SSI) is a Federal income
supplement program funded by general tax revenues (not Social Security taxes). It is
designed to help aged, blind, and disabled people, who have little or no income; and it
provides cash to meet basic needs for food, clothing, and shelter. http://www.ssa.gov/ssi/
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 28
Structural Barriers - structural barriers to health care refer to the structure of an
individual’s insurance plan benefits, or lack thereof, and relevant requirements which
could hinder the ability to access adequate health care (Scheer et al., 2003). They are
“impediments to medical care directly related to the number, type, concentration,
location, or organizational configuration of health care providers (IOM, 1993, as cited in
Draininoni, et al., 2006, p. 102). They encompass issues of limitations in health care
benefits, provider choice, and cost of referrals.
Supported Employment - competitive employment in an integrated setting consistent
with the strengths, resources, abilities, and interests of the individual with a disability,
with ongoing support services from an employment specialist or job coach (Wehman &
Schall, 2009, p. 166).
Transition Services - beginning not later than the first IEP to be in effect when the child
turns 16, or younger if determined appropriate by the IEP Team, and updated annually,
thereafter, the IEP must include— (1) Appropriate measurable postsecondary goals based
upon age appropriate transition assessments related to training, education, employment,
and, where appropriate, independent living skills; and (2) The transition services
(including courses of study) needed to assist the child in reaching those goals.
[§300.320(b)] (IDEA, 2004).
Vocational Rehabilitation Services - nationally available employment service support
for people with disabilities. For individuals who qualify for the service, vocational
rehabilitation agencies provide a variety of employment related services including, but
not limited to, counseling, job placement, and supported employment (Wehman & Schall,
2009, p. 140).
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 29
Chapter Two: Literature Review
This literature review explores the major perceived barriers in acquiring support
services for adults with ASD, or for those who are caretakers of an adult with ASD. The
review seeks to present the major perceived barriers to support services as they relate to
the areas of employment and health care, two areas which affect the financial, physical,
and mental well-being of any individual, but acutely affect those with a developmental
disability like ASD.
Barriers to employment and health care access for adults with ASD were chosen
with the following focus points in mind. First, given the prevalence rates for autism, 1 in
50 births (CDC, 2012) at the time of this study, and estimates that approximately 48,500
US teenagers with some form of an ASD reach their 18
th
birthday each year (Shattuck,
Roux, et al., 2012), there is increased demand for appropriate and effective services
(Gerhardt, 2009). Second, data indicate that the employment rate for adults with autism
and for others with cognitive disabilities is exceedingly low (Butterworth, Hall, Smith,
Migliore, Winsor, Timmons, & Domin, 2011; Gabriels & Hill, 2007; Wehman & Schall,
2009) with some estimates placing the rate approximately 6% (Holmes, 2007). Labor
force statistics from December 2010 indicated that approximately 28% of working-age
adults with disabilities were employed at that time, as opposed to seventy percent of
working-age adults without disabilities. (Butterworth et al., 2011). These same data also
pointed to situations where, even when adults with disabilities were employed, they often
earned low wages and worked limited hours. Third, poor access to effective, timely
health care is likely to contribute to diminished community integration, lower quality of
life standards, and higher subsequent health costs (Fouts, Andersen, & Haglund, 2000).
Fourth, U.S. Census Bureau data from 2006 estimated that there will be a doubling of the
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 30
population 65 and older by 2030 (as cited by Pivens & Rabins, 2011). These same data
report that, should the life expectancy of those with ASD remain consistent with general
population age expectancies, there will be approximately 700,000 individuals with ASD
aged 65 and older by 2030, and research communities know little about their health care
needs in the upper age ranges (Pivens & Rabin, 2011).
Lack of employment can lead to greater dependence on others financially,
whether this is upon family or the state or federal government, and unmet health care
needs can lead to higher subsequent health care costs (Beatty, et al., 2003; DeJong &
Palsbo, 2002). Therefore, access barriers to support services in these two areas warrant
investigation. Shattuck, et al. (2012) also point to a lack of attention to service costs and
efficiency in the health care system, and “a steady expanding body of evidence about
racial disparities in health outcomes and access to health services across a wide range of
health conditions and service systems” (p. 288). The research of Shattuck, et al (2012)
emphasizes the idea that the number of adults with autism is growing in the context of the
recent global economic recession, which increased pressure on public systems of support
to stretch budgets and do more with less.
To present the relevant literature, this chapter first presents a background
discussion about perceived employment barriers for adults who have an ASD to establish
a foundation for understanding the primary challenges to employment. This also serves to
set a framework for the review of the employment literature. Challenges include a lack of
information regarding available services, poor transition planning from high school to
adulthood, and a disincentive to look for work for adults from low-income families
(Wehman, Smith, & Schall, 2009). Next, perceived health care barriers are reviewed in
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 31
the relevant literature. The health care discussion is divided into three sections.
Environmental barriers have to do with the physical make-up of provider offices and
office equipment (Scheer et al., 2003). Structural barriers deal with the structure of an
individual’s insurance plan benefits, or lack thereof, and relevant requirements which
could hinder the ability to access adequate health care (Scheer et al., 2003). Finally,
process barriers are perceived obstacles in the direct transmission of service from
provider to consumer (Scheer et al., 2003). These can include lack of adequately trained
staff, untimely service, and language barriers (Scheer et al., 2003). Following the health
care review, a brief discussion regards the theoretical framework of social capital and
how this framework serves as a lens through which to view collected data in the proposed
study. Finally, a summary of the literature review concludes this chapter.
Employment
Access barriers to employment support services for adults with autism.
Employment enables adults who may or may not have a disability to earn income they
can use to support themselves and pursue interests of their own design (Hendricks, 2010).
Employment also provides a platform upon which personal dignity can be based, and has
been demonstrated to improve quality of life for adults with ASD (Hendricks, 2010). For
adults with autism, however, limited opportunities for employment are pervasive.
Individuals with an ASD have very different vocational needs than do people with other
developmental disabilities (Lawer, Brusilovskiy, Salzer, & Mandell, 2008). According to
self-reports from individuals with an ASD, vocational success is not contingent upon
completing job duties but lies in the social aspect of employment (Hendricks & Wehman,
2009). As the uneven cognitive and social abilities that go hand-in-hand with ASD can
result in a set of vocational needs that are “challenging to address with usual practices,
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 32
create problems with employment stability, and result in isolated work opportunities”
(Lawer et al., 2008, p. 488). Obtaining and maintaining employment can be an arduous
task for anyone, but this prospect can be particularly difficult for an adult with an ASD
due to the unique social and communication impairments associated with the core deficits
related to autism (Hendricks & Wehman, 2009). Core deficits in social communication
and social cue understanding can lead to misunderstandings of social expectations, and
difficulties in this area can lead to strained relations with co-workers and supervisors.
Lack of participation in employment can mean different outcomes for adults with
ASD, and research indicates outcomes can depend on racial/ethnic affiliations and socio-
economic factors. Shattuck et al. (2012) point to 12% to 24% of youth [with an ASD] not
being engaged in any productive activities after high school, and also identify this lack of
participation in the years after high school as being associated with poorer behavioral
outcomes, even more so in youth from families with low incomes. Labor force data also
show that people who have a disability experienced higher levels of job loss and hardship
in the recent recession, and that those who were working did so during limited hours and
for lower wages (Butterworth, et al., 2011). Therefore, learning about employment
support services and how to breach the barriers which deny access to them can be deeply
important to families and individuals with ASD who deal with issues ranging from
ensuring positive outcomes for financial independence to maintenance of positive social
behavior.
The Bureau of Labor Statistics (2011) indicates that. in 2011, 17.8% of persons
with a disability were unemployed while some studies revealed that only 6% of people
with an ASD had a full-time job (Holmes, 2007). It has also been found that, if adults
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 33
with autism do not find employment in the wake of their educational training, 70% of
them have a chance of not finding gainful employment for the course of their lifetime
(Holmes, 2007).
Though it is likely that one of the reasons for such high unemployment rates in
this population the lack of familiarity of society at large with the capabilities of people
with autism, other possibilities exist. When two-thirds of people with disabilities
surveyed report they are interested in becoming employed (McDonough & Revell, 2010),
it is also likely that there are gaps in services preventing adults with an ASD from
meeting their full potential. Barriers to employment for individuals with an ASD make
possibilities of more self-determination, and less government reliance, less likely for
these adults. For this reason, barriers to the employment of an individual with an ASD are
discussed in this section.
Several conclusions can be drawn from the previous discussion. First, not being
employed means that the social, financial, and emotional well-being of these individuals
fall solely the shoulders of families and caretakers. This would be a heavy burden to bear
for any household, but more so for single-parent homes or homes where there is not an
extended family network to help take care of more developmentally challenged
individuals with ASD. Second, it also means that society loses out on contributors to the
national economy. The fact that someone needs more training to get and keep a job does
not mean s/he could not ever get, or keep, a job. Lastly, another potential reality is that
these individuals may become more financially dependent on government services and
take more out of an already struggling financial system.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 34
Lack of information regarding available services. McDonough and Revell
(2010) found that identifying, accessing, and financing adult service needed by families
of those with ASD meant navigating a complex and intricate public and private service
system. The number of potentially available services is large; however, no “one-stop
shop” clearinghouse of services exits for adults with ASD as they do for a child with
autism (Wehman & Schall, 2009). Under the federally mandated entitlements of IDEA,
schools are required to provide free and appropriate learning support services which
allow a child to access the curriculum that is provided to general education students
(IDEA, 2004). But when a young person exits the public school system, either by way of
graduation or by “aging out” of the entitlement services program upon reaching twenty-
two years of age, (IDEA, 2004; Wehman & Schall, 2009), families are essentially “on
their own” in identifying, securing, and financing services.
Though students and families who have received special education services in high
school receive a “individualized transition plan” (IDEA, 2004) as part of their
transitioning to the adult world once they graduate or age out of school, many students
with ASD, and their families and caretakers, lack the appropriate information regarding
potential support services which may be available to their adult children with ASD
(Cameto, Levine, & Wagner, 2004; Eaves & Ho, 2008). For the purpose of this literature
review, “appropriate” information means the information is current, non-technical for
ease of understanding, and is provided in an individual’s native language. Because a lack
of this type of information has been identified within the literature as a major access
barrier to acquiring these services, it will be addressed forthwith within the available
literature review.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 35
Cameto, Levine, and Wagner (2004) conducted a 10-year study for the U.S.
Department of Education that followed more than 11,000 youths who were enrolled in
special education as they were making the transition into adulthood (National
Longitudinal Transition Study 2- NLTS2). The study included 920 youth with a disability
category labeling of autism with data collection that began in May 2001. Cameto, et al
(2004) found that 66.9% (p. 41) of parents with a child having an ASD had been provided
some information about services after high school; however the study indicated no rating
scale for the “usefulness” of the information. So even though families, individual adults
with ASD and caretakers of an adult with an ASD may have received information about
adult services, there was no way to determine how much use the information could
provide. Evaluating the same NTLS2 data, Levine, Marder and Wagner (2004) reported
that 40.4% of parents of a child with autism indicated that a lack of information is a
barrier to acquiring a needed service. Out of the 12 disability categories surveyed in their
study, only the deaf-blindness category identified lack of information of post-school
services at a higher percentage. These researchers (Levine, Marder, & Wagner, 2004)
indicate that as students approach the transition years, having post-school information
becomes a more important issue for parents.
Levine, Marder, and Wagner (2004), evaluating the same data as Cameto, et al.,
emphasized a lack of information about adult services, or the unavailability of services,
as the barriers encountered most often in efforts to obtain services for youth with
disabilities. The NTLS2 data represent one of the largest data sets available for youth and
adults with ASD, so this data’s indication that the lack of information regarding adult
services is a major barrier to acquiring services is significant. Parents, families, and
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 36
caretakers of an individual with an ASD can, therefore, be at an initial disadvantage when
their sons and daughters graduate, or “age out” of public education at 22 years old
(IDEA, 2004) because they lack the information necessary to make educated decisions
about services which may be needed, such as employment and vocational training, health
care, and suitable residential options.
As Cameto, Levine, and Wagner (2004) point out, keeping parents informed
about the services related to a student’s disability that are available after high school is an
important part of the school’s role in assisting the transition of students to adult life.
The lack of opportunities for employment begins before young adults with an ASD even
leave high school. The first opportunities for employment for a person with an ASD
begin with the transition plans found in their federally legislated Individual Educational
Programs (IEP), and barriers to accessing employment opportunity resources can be
identified through this process.
Several conclusions can be drawn from the issue of lacking informational
resources. If individuals and families lack the information they need about available
resources, then they become limited in their ability to make the most informed decisions
possible about best quality of life available to them. These, at present, semi-informed
decisions have implications regarding the types of jobs individuals can have, the types of
careers which may be available to them, the types of training which may be available,
and ultimately, the types of health care which may be available to them through relevant
employment.
Poor transition planning from high school. Because the precise combination of
programs an adult who exits the school system with an ASD will need to take advantage
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 37
of depends upon “the needs of each student and his or her transition [IEP] goals, the
nature of a student’s disability, the economic resources of the community, and the
eligibility requirements of the various potential community resources” (Wehman, Smith,
& Schall, 2009, p. 140), it is important that various support agencies participate and
collaborate in the transition process. McDonough and Revell (2010) point out the move
from the public education system to the adult service system involves learning a new set
of community resources, each with individual rules, eligibility guidelines and procedures.
McDonough and Revell (2010) also note:
Without continual involvement, planning and collaboration with key community
agencies, the potential for a successful transition from secondary education to the
community will be greatly diminished for students with ASD seeking smooth
transitions to adult services that achieve student-driven outcomes, including
employment. (p. 92)
Researchers have found that “effective transition planning and service depend
upon functional linkages between schools, rehabilitation services, and other human
service and community agencies” (National Center on Secondary Education and
Transition, 2004, as cited in Cameto, et al., 2004, p. 30). These linkages, or lack thereof,
in the individual’s exit process from high school can create barriers to support services
for employment. According to the NLTS2 data set (Cameto, Levine, & Marder, 2004),
related service personnel are actively involved in 57.7% of student cases when the child
has an ASD (p. 36). However, high rates of unemployment still persist for these youth.
Related service personnel address autism core-deficit related areas such as socialization,
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 38
language and communication, self-management, self-determination, employment, home
living, and community needs among them (Wehman & Schall, 2009).
Example community agencies which can be important transition resources include
State Vocational Rehabilitation (VR) programs, community rehabilitation service
providers (CRPs), one-stop career centers, state and community level developmental
disabilities programs (DDS), and Work Incentives Planning Assistance Projects (WIPA)
for planning benefits associated with Social Security Disability benefits (McDonough &
Revell, 2010). However, the range of services provided by community agencies and
organizations requires a general understanding of the purpose of each agency and a
realization that each operates under different program goals, eligibility criteria, service
guidelines, and funding requirements (McDonough & Revell, 2010). It is most helpful if
youth with ASD in transition and their families understand the basic role and function of
each agency in the areas of service planning and coordination, service provision, and
funding (McDonough & Revell, 2010). However, as of the time of this study, no agency
or service exists to assist individuals and caretakers with understanding the roles and
functions of such agencies.
Researchers Cimera and Cowan (2009) found school-aged children with autism
need services and life-skills that will help prepare them for transition into the workforce
and/or securing post-secondary educational opportunities. These researchers also found
that this need demands greater collaboration between community-based adult service
providers and primary and secondary educators. Additionally, both household income
and racial/ethnic background are related to parents’ participation in transition planning
(Cameto, Levine & Wagner, 2004). These researchers indicate that students in the
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 39
poorest household income groups are less likely to have parents who actively participate
in transition planning than are those from the highest-income homes.
Those from poorer households tend to be at an increased risk for disengagement from
therapeutic services after leaving high school (Shattuck, et al., 2012).
Another area where there is an indication of poor transition planning from the
secondary school level to the adult lifestyle is that of planning based on the needs and
wants of the individual it affects most: the adult with an ASD. NLTS2 data (Cameto,
Levine, & Marder, 2004, p. 36) indicate that, among students surveyed across all 12
disability categories, students with autism had the highest percentage (44.8%) of being
present at transition meetings yet participating little, had the highest percentage (22.6%)
of not participating in their own transition planning meetings, and had the second lowest
percentage (2.6%) of being leaders in their own planning for transition. Students with
multiple disabilities have the lowest leadership percentage (2.3%). This means that the
voice of the consumer of these services, the adult with ASD, is potentially ignored. At
the very least, his/her voice is underutilized, if not underestimated.
Misaligning eligibility requirements across local, state, and federal programs.
Meeting the eligibility requirements of various support programs for a person with an
ASD can mean all the difference in getting a job, keeping a job, or simply living an
independent life. Adults with an ASD who participate in the process of moving from high
school to the adult world of employment and adult responsibility have the potential to
access a variety of community employment and support programs to help address some
of the core features of the disorder, such as deficits in social functioning, or compulsive
needs to adhere to specific routines. “These programs offer an array of service
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 40
coordination assistance, employment services, and funding possibilities; however, they
operate under different federal, state, and local laws; regulations; policies; and service
arrangements” (Wehman, Smith, & Schall, 2009, p. 141). As Levine, Marder, and
Cameto (2004) argue with respect to the conflicting eligibility criteria at different federal,
state, and local agencies, “these multiple systems can have different, even incompatible,
eligibility criteria and sometimes complex processes for establishing qualification for
services” (p. 24). If the eligibility criteria for specific services are incompatible at the
various levels of government, then individuals with ASD and caretakers may then
struggle to acquire the service or program they need, which could ultimately hinder the
livelihood or quality of life of person with an ASD.
A major challenge faced by youth with ASD and their families is that these many
resources vary considerably in their availability, funding, and eligibility criteria. Some do
not exist in certain communities or are bound by limited funding and waiting lists for
services. Eligibility requirements vary from state to state and program to program. For
example, in California, the Department of Rehabilitation’s (DOR) State Vocational
Rehabilitation (VR) offices provide a range of supportive services for all adults with
disabilities. These support services include career assessment and counseling, job
research and interview skills, independent living skills, career education and training, and
assistance with assistive technology (Department of Rehabilitation Services, 2012).
However, access to their wide array of services is hindered for people with an ASD
because of eligibility issues associated with the VR office itself (Lawer, et al., 2009;
McDonough & Revell, 2009; Wehman, Smith, & Schall, 2009). According to the DOR
website, eligibility for VR services is based on two primary criteria. Individuals must:
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 41
1) have a physical or mental impairment that substantially impedes his / her
ability to secure employment, and vocational rehabilitation services are required
to prepare for, secure, retain, or regain employment consistent with the applicant's
unique strengths, resources, priorities, concerns, abilities, interests, and informed
choice; and
2) be able to benefit from the DOR's (Department of Rehabilitation) services in
terms of an employment outcome in an integrated setting (par. 2)
Many young adults with autism-related profiles encounter resistance on the part
of VR agencies to provide them with services (Wehman, Smith, & Schall, 2009).
Wehman, Smith, & Schall (2009) contend that the resistance “may be related to concerns
over the ability of youth with autism to achieve an employment outcome based on the
employment services available in their community” (p. 143). This finding is consistent
with data found by Lawer, et al. (2009) during a study on accessing VR services,
indicating that “individuals with ASD were more likely to be denied services because it
was believed that their disability was too severe for them to benefit” (p. 493). Even
though the number of individuals with ASD utilizing VR services increased by more than
121 percent from 2002 to 2006 (Hendricks & Wehman, 2010, p. 128), “the variations in
state to state in how VR eligibility guidelines are interpreted and applied have a
substantial impact on the extent to which VR services are available in a specific state and
community (Wehman, Smith & Schall, 2009, p. 143).
Disincentive to look for work for low-income households. Transitioning into
adulthood can be difficult for young people receiving Social Security Income (SSI)
benefits (Wittenberg & Loprest, 2007). The purpose SSI is to off-set costs of a child’s
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 42
disability for low-income families (Wittenberg & Loprest, 2007). Child SSI recipients,
upon turning 18 years of age, have their benefits re-determined under the adult disability
criteria for SSI eligibility and approximately one-third of those who previously received
the benefit must find alternate sources of income (Wittenberg & Loprest, 2007). Parents
of children receiving SSI face a disincentive to work because their earned income is a
determining factor which could lead to a reduction or loss of benefits when determining
adult Social Security Disability status (Wittenberg & Loprest, 2007). If unsure of how
cash and medical benefits will be affected by work, an individual may never take a
chance at being gainfully employed (McDonough & Revell, 2010) as fear of potential
benefit loss caused by paid employment is a major barrier to seeking employment (Miller
& O’Mara, 2006; Wehman, Smith, & Schall, 2009).
The uncertainty which surrounds redetermination of adult SSI benefits can be
particularly stressful for a family if the benefits are a primary source of income in the
household, which can often be the case, given the program’s asset and income
requirements (Wittenberg & Loperest, 2007). “Child SSI recipients who work generally
lose 50% of their SSI benefits after their income exceeds a certain threshold” (Wittenberg
& Loprest, 2007, p. 177). This disincentive to look for work has not gone unnoticed by
the federal government. Congress noted that individuals who could work in integrated
employment, meaning a program which teaches vocational skills and provides support in
securing employment, might have been discouraged from doing so for fear of enduring
diminished benefits before they established the capacity for continued self-support
(Butterworth, et al., 2011). However, the public cost of child dependence is great. In
December 2007, approximately 721,000 youths ages 13 to 21 received SSI benefits in
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 43
excess of over $400 million each month (Fraker & Rangarajan, 2009). Indeed, the
difficulties adults with ASDs face in their efforts to seek employment, and, thereby,
financial self-sufficiency plays a considerable role in taxpayer issues as well.
Health Care
Inadequate access to needed health care services can lead to negative
consequences for the physical and mental well-being, independence, and quality of life of
adults with disabilities (Neri & Kroll, 2002). Lack of adequate health care for people with
disabilities may lead to poor health outcomes, not excluding secondary conditions (Fouts,
Andersen, & Haglund, 2000), which can be far more expensive if only treated during
acute care scenarios (Hwang et al., 2009). Research has indicated that individuals with
ASDs are more likely than those in other disability categories to have a number of
disabling medical conditions (Hwang et al., 2009; Kogan, et al., 2008; Mandel & Cao,
2006), resulting in a greater potential for service use. Drainoni, Lee-Hood, Tobias,
Bachman, Andrew and Maisels (2006) found that people with disabilities tend to
underutilize basic preventative services, and can frequently use high-cost services such as
emergency room visits due in part to unmet medical needs. Therefore, having “An
improved understanding of how consumers with disabilities experience these barriers is a
first step towards eradicating access disparities between individuals with disabilities and
their non-disabled counterparts in the current health care environment” (Scheer et al.,
2003, p. 221).
Overall, people with disabilities report more access problems than persons
without disabilities, including people with ASD, and problems tend to be more
pronounced for those with the poorest levels of health and the most severe disabilities
(Drainoni, Lee-Hood, Tobias, Bachman, Andrew, & Maisels, 2006; DeJong & Palsbo,
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 44
2002). Many of the barriers to health care for people with disabilities are associated with
a lack of health insurance, racial/ethnic minority status, and low income (Neri & Kroll,
2003; Shattuck, et al., 2012). People with disabilities often have what has been described
as a “thinner margin of health” where impairments and functional limitations can make
them more susceptible to certain health problems (DeJong & Palsbo, 2002). Individuals
with disabilities report having significant problems with access to health care, even
though they are the largest group of consumers within the “vulnerable populations”
(DeJong & Palsbo, 2002).
At the time of this study, very little of information exists regarding the health care
issues and needs of adults with ASD (Shattuck, et al., 2012),. Another reason access
barriers to health care were chosen as the specific area of research is the steady, and
dramatic, increase in prevalence of the condition. The Centers for Disease Control and
Prevention (CDC) estimates the prevalence rate of autism in the US at approximately one
in eighty-eight births (CDC, 2012), while Shattuck, et al (2012) indicate that
approximately 48,500 US teenagers with an ASD reach their 18
th
birthday, the age of
majority, each year in the United States. It can be inferred that the incidence rates do not
solely represent an increase in the numbers of people and families affected by the
condition, but they also simultaneously represent a sharp increase in the amount of
money it costs to treat health issues which affect the developmentally disabled.
Establishing effective policy standards which allow equitable access to medical
care could be one way to reduce spending costs, not only for individuals with ASD and
their caretaking families but for citizen taxpayers as well. Therefore, looking closely at
what issues remain barriers and why these barriers persist may lead to discovering
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 45
opportunities in removing them, thereby improving access and streamlining costs. As
Leslie and Martin (2007) point out, information on treatment costs is a highly demanded
policy tool, as determining costs associated with a condition is a necessary first step in
developing policy priorities.
The following section reviews the health care literature and its relevance to access
barriers for adults with ASDs as they attempt to acquire support services and is separated
into three topics: environmental barriers, structural barriers, and process barriers. Within
each of the three topic areas, the theoretical framework of social capital serves as a
primary lens through which to address whether or not tapping into social capital networks
makes a difference in securing and financing these services. Environmental barriers are
conditions in the physical environment which hinder the delivery of health care service
(Hwang et al., 2009). These can include a lack of accessible examination rooms, varied
equipment that may be needed to accommodate the disability, and the unavailability of
needed and reliable transportation (Hwang et al., 2009).
Environmental barriers. Despite the Americans with Disabilities Act (1990)
which “prohibits discrimination on the basis of disability in employment, state and local
government, public accommodations, commercial facilities, transportation, and
telecommunications” some health care providers have offices that are physically
inaccessible to those with mobility impairments or lack supplies and/or equipment
(DeJong & Palsbo, 2002; Scheer et al., 2003; Sutton & DeJong, 1998). Such
accommodations can be needed to deliver adequate care to adults with ASD who may
have physical disabilities. In the data set analyzed by Levine, Marder, and Wager (2004),
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 46
researchers found that issues of time, cost, and distance were reported as barriers to
service access for one in six to one in eight youth with a disability.
One environmental barrier to health care access for some people with ASD is that
of transportation. Having access to private or public transportation which is reliable and
prompt is a key component to any individual’s, receiving adequate health care whether
s/he has a disability or not. Inaccessible health care provider offices can mean that some
individuals may only see their physicians and related service providers when it is
absolutely necessary, thereby putting their health at risk and increasing the chances of
health deterioration (Neri & Kroll, 2003). Accessible transportation can be a problem for
individuals with mobility impairments because it can require a need for rescheduling
appointments, delaying care, and can be a source of real frustration for consumers
(DeJong & Palsbo, 2002). Even if a person with an ASD has access to public
transportation, service offices may not be easily accessible (DeJong & Palsbo, 2002).
Some individuals who used publicly funded door-to-door para-transit services
reported that appointments would often need to be made a week in advance (Scheer et al.,
2003), indicating a system that is unresponsive to pressing medical needs. Regarding
private transportation, if a driver to an appointment is a paid assistant, or publicly funded
personal assistant who works a limited number of hours, there may also be little
flexibility in the work schedules of these individuals (Scheer et al., 2003). Participants in
the qualitative Scheer et al (2003) study also indicated that publicly funded services were
sometimes not dependable, often being late in pick up, not arriving at all, or not having
adequate mobility equipment to successfully transport the individual from one place to
the point of provider service.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 47
It should be noted that core features of autism can also present difficulty when
attempting to access transportation. For example, although adults with ASD may know
the steps involved in safe, independent transportation, they may not use these skills as
they traveling within the community (Smith & Targett, as cited in Wehman & Schall,
2009). For example, adults with ASD may have problems crossing the street because they
may engage in rituals, such as spinning while walking (Smith & Targett, as cited in
Wehman & Schall, 2009), as they make their way across the street. Such behavior could
necessitate the assistance of another person to help cross the street, and, although this
person may be a caretaker, personal assistant or friend, his/her assistance with keeping an
appointment will necessitate the appointment’s also matching this person’s schedule,
adding one more layer to the access barrier hurdles for health care.
Additionally, some people with ASD can also display dangerous or disruptive
behavior in private vehicles. For example, an individual with ASD who is knowledgeable
about traveling routes and geography may insist on traveling along a specific route,
reacting in a disruptive manner during deviation from said route (Smith & Targett as
cited in Wehman & Schall, 2009). Such behavior could cause delays in reaching
appointments, possibly necessitating a rescheduling, in turn delaying health care further.
Therefore, in addition to the environmental barriers which already exist in attempting to
access health care, the individuals with ASD may themselves offer up barriers to
accessing care in their own best interest.
Structural barriers. Structural barriers to health care refer to the structure of an
individual’s insurance plan benefits, or lack thereof, and relevant requirements which
could hinder the ability to access adequate health care (Scheer et al., 2003). They are
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 48
“impediments to medical care directly related to the number, type, concentration,
location, or organizational configuration of health care providers” (IOM, 1993, as cited in
Draininoni et al., 2006, p. 102). Factors discussed as elements of structural barriers
include the complexity of insurance and managed care; the lack of access to specialized
care; financial restrictions due to insurance issues; and the determination of “medical
necessity”. Research indicates that structural barriers related to health insurance and
provider plans exist for the general population without disabilities but are exacerbated for
people with disabilities (Drainoni et al., 2006).
Complexity of insurance and managed care. DeJong and Palsbo (2002) identify
one of the recurring health care access problems for people with disabilities as the
complexity of the insurance coverage system, specifically Medicaid and Medicare, their
organizational configuration, and the availability of the services they provide. As
Wehman and Schall, (2009) point out, “the SSA (Social Security Agency) disability
programs and Medicaid and Medicare are terribly complex” (p. 148). Medicaid is a
jointly funded state and federal health program for those who may be economically less
advantaged and disabled, and is a major funding source of health care for children,
accounting for approximately 75% of all services for the developmentally disabled
(Ruble & Heflinger, 2005). Consumers’ ability to navigate the system can be complicated
by sudden changes in health plan type, approval requirements, and covered benefits that
may or may not be offered within a managed care network of providers (Drainoni et al.,
2006). As DeJong and Palsbo (2002) indicate, because of their low participation rate in
the labor force, individuals with “activity limitations”, including adults with moderate to
severe forms of ASD, are less likely to belong to employer-sponsored health plans and
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 49
are more likely to be a part of Medicare or Medicaid programs. Dual enrollment in
Medicare and Medicaid can also be problematic. For many people with disabilities, their
greater degree of health care need exposes them to a larger share of out-of-pocket
expenses (DeJong & Palsbo, 2002), while dual enrollment in both Medicare and
Medicaid means dealing with two sets of benefit packages and two sets of payment
policies.
Beatty, Kristofer, Hagglund, Neri, Dhont, Clark, Shelley, and Hilton (2003) found
that, among adults with chronic and disabling conditions, the complexity of the referral
process in Managed Care Organizations (MCOs), and claims and reimbursement
processes in pay-per-service plans, could present additional barriers to people with
disabilities as they seek access to specialty care. Beatty et al (2003) present that poor
access to needed specialty care is linked to the development of preventable secondary
conditions that can result in much costlier treatment. Sutton and DeJong (1998) found
“although HMOs have procedures for members to obtain specialty and other high-cost
services, complicated referral and authorization requirements could pose significant
barriers, particularly for persons with physical, cognitive, or mental disabilities” (p.
1313).
Leslie and Martin (2007) found that insurance companies can also designate
autism as a “diagnostic exclusion”, meaning that services rendered specifically for the
treatment of autism are not covered by the plan, even if those same services would be
covered if used to treat another condition. There is also evidence that people with
disabilities and chronic conditions in managed care plans have less access to specialty
care compared with those in traditional fee-for-service plans. “We do not know if the lack
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 50
of access to specialty care is due mainly to coverage issues or to gatekeeping and
preauthorization hurdles” (Dejong & Palsbo, et al., 2002, p. 277). Additionally, most
health insurance plans in the United States do not cover maintenance therapies that
maintain function or assist in independent living, as they primarily cover such therapies
that restore or improve function (Neri & Kroll, 2003). If an individual with ASD, or
his/her caretaker, is has the option of selecting an insurance provider or MCO, difficulty
may also exist because the lack of available options can limit the quality of care which is
available. In such cases, consumers who would require this specialized benefit should
know beforehand that “choosing between competing health plans and between options
within plans is not always a simple process, because consumers usually have no basis on
which to compare the quality of one plan with another” (Sutton & DeJong, 1998).
Lack of access to specialty care. Kogan et al. (2008) indicate that children with
ASD had difficulty accessing services, “particularly for specialty care” (p. 1153).
Unfortunately for adults with ASD who need specialized care, this trend seems to be
consistent in the adult populations as well. Access to specialists is important for people
with disabilities, especially for those with conditions that are not well understood by
primary care physicians (DeJong & Palsbo, et al., 2002). A major reason access to
specialists can be important for adults with disabilities is that poor access to specialty
care has been linked to development of secondary conditions that can be more costly to
treat down (Beatty, et al., 2003; DeJong & Palsbo, et al., 2002). Comorbidities can
complicate health assessments and treatment (DeJong & Palsbo, et al., 2002). Drainoni et
al. (2006) found that needing referrals to access specialist services was a barrier to
receiving needed care. In this study, the referral process for specialty care was seen as an
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 51
“undue burden” that could be physically and psychologically draining for people with
already compromised resources financially, emotionally, or otherwise when they were
required to navigate a difficult managed care referral system.
Qualitative research conducted by Drainoni et al (2006) found participants that
reported significant delays in care due to lengthy insurance authorization procedures,
citing that approval issues can become “even more complex when more than one
potential payer was involved” (p. 105). In another qualitative study that included data sets
from several states, 37% of children with autism had problems obtaining necessary care
from specialty doctors in the preceding year (Liptak & Benzozi, 2008). This same study
by Liptak and Benzozi (2008) found that children from poor families were less likely to
use physician services and had more difficulty in obtaining a referral for specialty
provider services than children from middle or higher income families (p. 155).
Financial restrictions. Appropriate financing of services for people with ASD is
an important component of access to care (Leslie & Martin, 2007). Having the
knowledge about which insurance options may be available is only one aspect of the
health care access puzzle for adults with ASD and their caretakers. Once these
individuals and their families find an appropriate insurance option, they must then have
the ability to pay for services rendered in order to receive the best quality care available
to them. However, financial issues can create great access barriers in obtaining needed
care. Financial barriers to health care access occur when insurance coverage restrictions
put certain services out of reach, especially for lower-income consumers with disabilities
(Drainoni et al., 2006). DeJong & Plasbo (2002) found that people with disabilities are
nearly three times as likely to live in households with a combined annual income below
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 52
$15,000 and, thus, require income support. A likely choice when a family’s financial
resources are low is to forego treatment in order to avoid the cost. This option does leave
open the possibility of converting a mild illness or injury into one that becomes more
serious and more costly to treat later.
Beatty et al (2003) found that income level was “consistently and substantially”
linked to receiving needed care across services, except primary care. Their study found
families whose income was less than $20,000 would be least likely to obtain care every
time it was needed and would be unlikely to pay for needed health care regardless of
health plan type. Hwang et al (2009) note that the range and depth of services needed by
people with disabilities is high in costs. Cost barriers are especially problematic for the
near-poor, who may not qualify for government-sponsored health access programs
(Drainoni et al., 2009). Research conducted by Shattuck et al (2012) found a lack of
attention paid to socioeconomic status in ASD research. These researchers noted such a
lack of attention to this detail was “surprising” because impoverishment is associated
with decreased access to services and adverse developmental outcomes.
Other research linked trends in costs related to ASD to ages when certain services
were received. For example, Shimabukuro, Grosse, and Rice (2008)found that the
average medical expenditures for children with ASD tend to decrease from 1-4 years old
to 5-10 years old, remain fairly stable through 11-17 years old, but then rise again in the
18-21 year old range. Within this research group, “average total expenditures for
individuals with an ASD were 4.1-6.2 times greater than for an individual without an
ASD” (p. 548). This rise in medical expenditure seemed to be linked with increase in the
use of prescription medicine as individuals with ASD age where “the cost ratio for
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 53
medications increased from 2.4 at 1-4 years of age to 9.6 at 18-21 years old. As children
with ASD age, prescription medicine represents an increasing share of total costs”
(Shimbakukuro, et al., 2008, p. 549). This rise in pharmacological options is somewhat
troubling because lack health care related data descriptions of what services are used and
not used leaves open the possibility that many individuals and families increasingly
manage behavior issues with drug treatments.
Medical necessity. Some health plans can include managed care options that use
physician “gatekeepers”, or doctors who decide who does and does not need a particular
service. Under these health plans, as DeJong and Palsbo (2002) describe, particular
benefits may not be accessible unless deemed “medically necessary” and are pre-
authorized by the physician gatekeeper or health plan medical director. Because the need
for specific services can sometimes not be well understood by those who authorize them,
individuals with disabilities can have difficulty getting the service they need. This is more
a problem for people with disabilities who are more likely to need the services of
providers, or post-emergency care providers, who deliver services in the emergency room
setting when they have a more costly health care issue (DeJong & Palsbo, 2002). Most
definitions of medical necessity “recognize the need to restore function following the
onset of a major disabling condition, but do not recognize the need to maintain or
enhance function in people with progressive conditions who want to function more
independently” (DeJong & Palsbo, 2002, p. 275), such as people with an ASD.
Although people with disabilities make up approximately twenty percent of the
nation’s population (Hwang et al., 2009), Sutton and DeJong (1998) indicate that they
account for approximately forty-seven percent of total medical expenditures and that, on
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 54
average, these expenditures are over four times more expensive than those for people
without disabilities. Without the ability to access needed specialty care, care that access
can be limited to by gatekeepers who may not be familiar with autism-related issues,
individuals with ASD and families who care for them can face considerable health-
related issues.
Redefining of autism spectrum criteria by the DSM-V. Current DSM-IV-TR
criteria place ASDs under an umbrella of five total disorders, and three of these disorders
are pervasive developmental disorders (PDDs) (McPartland, Reichow, & Volkmar,
2012). These three PDDs include 1) autistic disorder, 2) Asperger disorder, and 3)
Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS). The two non-
PDDs are 4) Rett’s syndrome, and 5) childhood disintegrative disorder. The proposed
revision within the upcoming DSM-V dictates be only a single category of diagnosis,
Autism Spectrum Disorder (Gibbs, Aldridge, Chandler, Witzlsperger, & Smith, 2012;
Huerta, Bishop, Duncan, Hus, & Lord, 2012; McPartland, Reichow, & Volkmar, 2012).
The rationale behind the updated diagnosis is that, although the ASD is identified reliably
and validly among other childhood disorders, the distinction among the three categories
of PDDs has been found to be inconsistent and varying from site to site (American
Psychiatric Association, 2011, as cited in Gibbs et al., 2012). However, little is known
about the sensitivity and specificity of the new criteria, and there is concern within the
community of autism that those who may not be identified under the new criteria, or may
lose the diagnosis previously held, could lose necessary services (Huerta, Bishop, &
Duncan et al., 2012).
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 55
The DSM-IV-TR delineates twelve possible symptoms of autism spectrum
disorder within three areas of impairment: social interaction impairment; communication
impairment; and Restricted and Repetitive interests, activities and Behaviors (RRBs)
(Gibbs, Aldridge, Chandler, Witzlsperger, & Smith, 2012). In the DSM-V, these three
categorical areas would be reduced to two domains. Social impairments and
communication impairments would be combined into a single domain,
Social/Communicative Deficits (SCD), while the second domain would be Restricted,
Repetitive Behaviors (RRB), with RRBs including the addition of sensory abnormalities
which are currently not present within the DSM-IV-TR criteria (McPartland, Reichow, &
Volkmar, 2012). Data from the few empirical studies conducted to date testing the
sensitivity and specificity of the new DSM-V criteria indicate that fewer individuals
would be diagnosed with an ASD under this new criteria standard (McPartland, Reichow,
& Volkmar, 2012). The implication being that less identification of people with autism
would act as an obvious barrier to receiving available services under the autism label.
The proposed change to a single ASD category, as well a requirement that there be a
history of RRBs, leads some to believe it will be more difficult for individuals with PDDs
to obtain an autism diagnosis (Huerta, Bishop, Duncan et al., 2012).
How this new definition of autism will affect who is and who is not eligible for
available services is yet unclear. Some studies have noted that higher functioning
individuals will be the ones who bear the brunt of lack of identification. McPartland,
Reichow, and Volkmar (2012) found that those who were clinically diagnosed with
autism were more likely to meet DSM-V criteria than those with Asperger’s Syndrome,
indicating 75.8% qualifying with classic autism, and only 25.0% with Asperger’s. The
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 56
new changes to the autism eligibility criteria have been approved by the American
Psychiatric Association and are scheduled to take effect in May 2013 (www.dsm5.org).
Process barriers. Process barriers are obstacles that exist in the direct
transmission of service from provider to consumer (Scheer et al., 2003). They can include
lack of adequately trained staff, untimely service, and language barriers (Scheer et al.,
2003). Process barriers deal with the actual experience of the health care consumer and
his/her satisfaction with the availability and provision of service. These perceived barriers
can be numerous, as they encompass the service side of a complex, and potentially cost-
prohibitive, health care system.
Lack of adequately trained staff. A report by the Institute of Medicine (as cited
in Pivens & Rabins, 2011) concluded that the American workforce will be unable to meet
the health care demands of the increasing elderly population in the United States. The
report pointed out not only the need for more physicians and nurses, but also a much
larger demand for direct care workers
Who provide 70% to 80% of the daily hands-on care for disabled older adults.
Exacerbating this situation is the lack of evidence that existing models of care can
meet the needs of older adults with an ASD and that the current long-term care
workforce is not trained to address the unique complexities of caring for
individuals with ASDs (Pivens & Robbins, 2011, p. 2153).
Therefore, not only do people with ASD have difficulty getting the health care they
need due to a lack of adequately trained staff, but people with disabilities generally have
trouble finding providers who meet their specific health care needs (Sutton & DeJong,
1998). This situation of a lack of providers can be more troubling for women with
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 57
disabilities as they have been reported to have difficulty in getting general health care like
pap smears, mammograms, and general reproductive health service (Hwang et al., 2009).
DeJong and Palsbo (2002) found that the “most commonly reported barrier” (p. 272)
is the physician’s lack of knowledge about the health care needs of those with disabilities.
This study found that health care consumers with disabilities often felt they needed to
educate their physicians first about the health-related issues which were associated with
their impairment. The DeJong and Palsbo (2002) study also found that many physicians
often saw the impairment as the principal health diagnosis instead of the complaint of the
consumer.
Gerhardt and Lainer (2011) also point out a high turnover rate within the direct care
worker staff as they note an inadequacy of training the workers are asked to provide in
their group home or job setting. In addition, Gerhardt and Lainier (2011) found a 2003
Department of Health and Human Services (DHHS) report pointing to a 50% turnover
rate for programs serving adults with developmental disabilities, multiplying the effect of
the already present 10 to 12% of staff vacancies. This same report indicated that the high
turnover rate, coupled with the already present staff vacancies, would be deemed as
“crippling” to any other industry with such shortages.
Lack of physician literacy. In many primary care settings, people with
disabilities do not have the same opportunities to take advantage of preventative and
health maintenance activities (Sutton & DeJong, 1998). Research has linked these missed
opportunities to health care providers overlooking preventative health care measures
because they are prone to focusing primarily on conditions associated with the disability
(DeJong & Palsbo, 2002; Sutton & DeJong, 1998) indicating a lack of knowledge or
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 58
experience in working with patients with disabilities. As indicated by Sutton and DeJong
(1998), perhaps it is plausible that most providers, specifically primary care providers,
are unaccustomed to treating people with disabilities. “Disability literacy” refers to the
specific knowledge and skill sets that are required by health care providers to respond
appropriately with adequate care to the needs of individuals with disabilities (Drainoni et
al., 2006). In addition, clinical presentation of medical difficulties can present with
atypical symptoms in children with ASD, and, therefore, may be unfamiliar to the
average physician (Gabriels & Hill, 2007). Therefore, there is reason to believe the
inference that medical difficulties may present as atypical in the adult population as well.
Across all focus groups in research conducted by Drainoni et al (2006,)
participants reported problems stemming from providers’ insufficient knowledge about
patient disabilities. Indeed, the most commonly reported barrier to health care access in
research conducted by DeJong and Palsbo (2002) was physicians’ lack of knowledge
about health care needs for individuals with disabilities. Consumers of health care with
disabilities in their research indicated they often had to educate their physicians about
their own health-related issues associated with their disabilities. Participants in the
Drainoni et al (2006) study expressed frustration at not being able to identify or locate
disability knowledgeable providers. Half of the participants in the Drainoni et al (2006)
study reported provider knowledge as a barrier to a needed health care service.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 59
The Concept of a Social Capital Framework
Coleman (1988) defines social capital by its function, and indicates it has two
elements it must consistently possess: 1) social structures and 2) facilitation of certain
actions by actors, persons or corporations, within these social structures. In this sense,
social capital is deemed by Coleman as “productive, making possible the achievement of
certain ends that in its absence would not be possible” (Coleman, 1988, p. 98). With
respect to the purposes of this proposal, social capital functions as a means by which to
bypass access barriers to acquire support services. How these access barriers can, at
times, be bypassed depends upon activation of social capital networks via institutional
agents. Stanton-Salazar (1997) defines institutional agents as “those individuals who have
the capacity and commitment to transmit directly, or negotiate the transmission of,
institutional resources and opportunities” (p. 6). In layman’s terms, this means a person
who can open doors to a service or possibility that might not otherwise be open to
someone. By activating these agents and acting upon social capital networks, barriers
which may have been encountered at one time may be overcome, or circumvented
altogether, with the help of someone more familiar with a particular system or structure
that needs navigating. Relationships with institutional agents, and the networks that
weave these relationships into units, can, therefore, be understood as social capital
(Stanton-Salazar, 1997, p. 8)
Stanton-Salazar’s (2010) work on social capital and the relevance of institutional
agents bears out an assertion that “personal access to many valued resources and
opportunities in society - by way of social networks - occurs through the messy business
of commanding, negotiating, and managing many diverse (and sometimes conflicting)
social relationships” (p. 4). This proposal asks several questions, and among them is
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 60
whether activation of social capital networks bears any significance when attempting to
access support services for adults with ASD. If so, then, it is important to learn in what
ways and who the institutional agents are who can be helpful in overcoming these
barriers. Empowerment can be defined as “the active participatory process of gaining
resources [and] competencies needed to increase control over one’s life and accomplish
important life goals” (Maton & Salem, 1995, as cited in Stanton-Salazar, 2010). Using
this definition leads to questions regarding how families from across all income and
racial and ethnic backgrounds can become empowered to access needed support services
for adults with ASD.
Aday and Andersen Health Care Access Framework
The Aday and Andersen framework (1974) of health services utilization is used in
this study to identify and categorize movement and the availability of access to health
care and related services for adults with autism and their caretakers. In this framework,
“access” means that services are available when and where they are needed by the patient
and that the point of entry to the system is well-defined. This framework is based upon a
structure of five inter-woven aspects of the development and delivery of medical care: 1)
health policy, such as financing and manpower; 2) characteristics of the health delivery
system, such as resources and organization; 3) characteristics of the population at risk,
such as predisposing risks and need risks; 4) utilization of health services, such as type
and purpose, and 5) consumer satisfaction, such as costs, coordination, information, and
quality.
The first aspect, health policy, characterizes policy as the starting point for
consideration of the access concept. The second aspect, characteristics of the health care
delivery system, is sub-divided into two main elements: 1) resources, and 2) organization.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 61
According to this framework, resources are the labor and capital that are devoted to
health care. The resource component involves both the volume and distribution of
medical resources in an area as well. Resources include personnel, structures in which
education about the system and health care are provided, as well the equipment and
materials used in providing health care service. The organization component of the
delivery system describes, “what the system does with its resources” (Aday and
Andersen, 1974, p. 213) and refers to the ways in which personnel and facilities can be
coordinated and controlled in the delivery of health care. The third aspect of the
framework,
The third aspect of the health care framework, characteristics of the population at
risk, are the factors of a condition which are predisposed, enabling, and need-based which
become the basic units determining “why” people use the health care system.
Predisposing factors describe the propensity of people to use services. Enabling factors
are determined by the means, such as income level and insurance coverage, people have
to access the system. The need component speaks to the illness level of the patient.
The fourth aspect of the health care framework is the utilization of health care services.
Utilization in this framework is characterized by “type, site, purpose, and the time
interval involved” (Aday & Andersen, 1974, p. 214). The fifth and final aspect of the
framework refers to consumer satisfaction, and this relates to the personal attitudes
toward the medical care system from those who need to interact with it.
Summary
This literature review discussed several key topics vital to conducting the
proposed study. First, themes were outlined as access barriers to employment services for
adults with ASD. Employment-related topics include a lack of information regarding
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 62
available services; misaligning eligibility requirements across federal, state and local
programs; poor transition planning from high school to adulthood; and a disincentive to
look for work. Health care-related topics within the review included three types of access
barriers: environmental, structural, and process. Environmental barriers have to do with
physical layouts of offices and the means which need to be engaged to travel to offices;
structural barriers are organizational barriers which have to deal with how insurance
providers deliver their services from an organizational level, such as complexity of
managed care systems, and a lack of availability of specialty care. Finally, process
barriers were discussed, and these deal with the actual delivery of service from provider
to consumer. Barriers here include a lack of adequately trained staff who work with
adults with ASD, and a lack of physician literacy, or knowledge about providing care to
those with disabilities.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 63
Chapter Three: Research Methodology
This study sought to identify, through qualitative investigation, perceived barriers
to accessing employment and health care support services for adults with autism
spectrum disorders and whether the activation of social capital networks bears any
influence on accessing these services. Perceived barriers as they relate to health care fall
into three categories: environmental barriers which address the physical features of
offices and transportation related issues, structural barriers which address the availability
of insurance options and related eligibility requirements, and process barriers which deal
with the actual service experience when a person with ASD receives health care.
Perceived barriers to employment support services were viewed through the lenses of
structural and process barriers, such as, structurally, the types of services that are or are
not available and the nature of their eligibility requirements. Relating to process barriers
in employment services, this study examined the consumer experience when trying to
secure employment-related support services and the navigation of language barriers. This
study also looked at whether physicians are knowledgeable about how to treat a person
with disabilities, and not merely a disability. The purpose of this study was to explore the
quality of knowledge regarding access barriers to employment and health care support
services for adults with an Autism Spectrum Disorder. A parallel purpose was to improve
the quality of knowledge on how social capital networks do or do not make a difference
in acquiring support services in employment and health care for the individual.
Identifying what the barriers in acquiring support services for adults with ASDs may
assist in creating strategies that can be useful in overcoming them. In addition the
identification of strategies to overcome barriers in acquiring support services will help
adults with ASDs lead independent, dignified and full lives. Therefore, this research
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 64
sought to establish baseline criteria for equity of access standards for those of all
backgrounds who love and care for someone with autism.
Approach
Clandinin and Connelly (2000) describe the narrative research approach as the
most effective method for capturing detailed stories from a small group of individuals.
The method is based upon capturing the respondent’s viewpoint through the interview
process. The qualitative approach helps to evoke the emotion of moments described in
the stories of the respondents. A qualitative, narrative view was used in this study to
capture a detailed description of the experience of attempting to secure support services
for adults with ASD within the system of available options and services.
Research Questions
Three research questions guided this study:
1. What perceived barriers existed in acquiring support services for adults with an
Autism Spectrum Disorder in the area of employment?
2. What perceived barriers existed in acquiring support services for adults with an
Autism Spectrum Disorder in the area of health care?
3. Did the activation of social capital networks influence success rates of obtaining
support services in employment and health care?
Hypotheses
1. In the area of employment, barriers will be found to include poor transition
planning by schools, poor relationships between client families and service
agencies, that a lack of available service agency options exist, and that clients and
families will lack general information about changes related to adulthood and
managing an ASD.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 65
2. With regard to health care, the researcher believes the majority of the access
barriers will be found in the structural and process barriers that individuals with
ASD and caretakers face. A limited number of insurance options and conflicting
eligibility requirements will, in this researcher’s view, impede access to health
care.
3. The researcher also believes a greater number of process barriers will be faced by
those who are unable to activate social capital networks. Those who are able to
activate more social capital networks will be more successful in securing services.
Frameworks Related to Method
The Aday and Andersen framework (1974) of health services utilization was used
to identify and categorize movement and access availability to health care and related
services for adults with autism and their caretakers. This framework was based upon a
structure of five inter-woven aspects of the development and delivery of medical care: 1)
health policy, such as financing and manpower;
2) characteristics of the health delivery system, such as resources and organization; 3)
characteristics of the population at risk, such as predisposing risks and need risks; 4)
utilization of health services, such as type and purpose, and 5) consumer satisfaction,
such as costs, coordination, information, and quality. The framework was thus
conceptualized as initiating from health policy, moving through the characteristics of the
health delivery system and the characteristics of the population at risk (inputs), and
through utilization of the system and consumer satisfaction (outputs).
Stanton-Salazar conceptual (2010) identifies social capital as established by
resources and forms of social support that are ingrained in a personal network of
associations and which may be accessible through direct or indirect ties with institutional
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 66
agents. Central to the framework are institutional agents, individuals who occupy one or
more positions that command status or authority within our society and act on behalf of
others in order to transmit highly valued resources such as information regarding
disability knowledgeable physicians. For the purposes of this study, institutional agents
were used to illuminate the view that, “for low-status children and youth, the
development of supportive relations with institutional agents outside the immediate
kinship is systematically problematic” (p. 6) and may have direct impact on the ability to
access support services in health care and employment. Therefore, without access to
institutional agents in lower-income families and communities, the ability to access a
diverse array of available services could potentially be highly limited.
Population and Sample
In qualitative sampling, the statistical sample is deemed to be the strength of the
study. Reliability is tied to obtaining information that is consistent and trustworthy.
Information-rich cases are crucial for in-depth analysis. “Information-rich cases are those
from which one can learn a great deal about issues of central importance to the purpose of
the inquiry” (Patton, 2002, p. 230). As the purpose of this study was to identify perceived
barriers in acquiring support services for adults with ASDs, it, therefore, sought subjects
who have had, and continue to have, various experiences while attempting to secure
support services in the areas of health care and employment.
To locate the participant group of at least five adults with ASDs, representatives
were sought from low, middle, and high social capital network statuses. This allowed for
a total of seven participants. Because social capital can be difficult to quantify (Franke,
2005), indicators for levels of social capital were based upon socio-economic factors and
markers within the Stanton-Salazar social capital framework. These were, therefore,
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 67
based upon factors such as income, primary language spoken, whether individuals rent or
own their own homes, employment, membership in professional or advocacy
organizations, and the number of institutional agents known within a personal network.
Through the process, information-rich informants were located (Patton, 2002) and
asked to nominate individuals from their own social capital networks with whom they
had been in contact before. Informants were also gained from the researcher’s own social
capital networks, as the researcher had been an educator of secondary students with
autism. Only individuals who were nominated by others or came from the researcher’s
own social capital networks participated in the study.
Participant criteria satisfied the following: 1) 18 years of age or older, 2) currently
have a medical diagnosis of an ASD, 3) exited the secondary school system, 4) has
attempted to secure adult support services for autism related issues as an adult with ASD,
or as a caretaker of an adult with an ASD, and 5) possess various degrees of social capital
resources such as relationships with institutional agents who “have the capacity and
commitment to transmit directly, or negotiate transmission of, institutional resources and
opportunities” (Stanton-Salazar, 1997, p. 6). For adults with ASD and caretakers of adults
with ASD, resources included information about programs which assist the adult ASD
population, mentoring and job skills, as well as assistance with career decision-making,
social skills which promote employment longevity, or being aware of physicians who are
knowledgeable about disability-related issues.
Those excluded from the study were those who had not reached the age of
eighteen, were still attending high school and were, thereby, receiving services and/or
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 68
service information from a “clearinghouse” resource, and had not attempted to secure and
finance adult supports for service related to the treatment of ASD.
Instrumentation
The data in this study was collected through an interview process. The researcher
in this study was concerned with gathering stories which collectively shed light on the
experiences which took place when an adult with ASD, or his/her caretakers, attempted
to secure support service in employment and health care. Participants were recruited
through the researcher’s own social capital networks through snowball sampling (word-
of-mouth) as a former secondary teacher of students with autism.
The measurement, design, and analysis for this study was a qualitative method
strategy. Two specific sampling strategies were utilized for this study: critical case
sampling and snowball or chain sampling. Critical case sampling means recognizing key
dimensions, such as an autism diagnosis within the adult community, which can make for
a case. Critical case sampling was also important to this study, as this study focused on
the specific availability of services among a given population, looking specifically at
individuals with a particular diagnosis. Snowball or chain sampling was another sampling
approach that helped to locate critical cases. The unit of analysis for this study is people-
focused.
This study employed the use of interviews to acquire data. Patton (2002) indicates
three types of open-ended interviews in collecting qualitative data: the informal
conversational interview, the general interview guide approach, and the standardized
open-ended interview. The informal conversational interview involves the use of
spontaneous questions that may naturally arise during the course of conversation. When
this interview technique is employed, participants could be under the impression they are
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 69
merely having a conversation with the interviewer and not being interviewed for research
purposes. In the general interview guide approach, all important topics are covered
during the interview. This task could be achieved by employing the use of an interview
checklist before the interview has begun and frequent references to the checklist during
the course of the interview. In the standardized open-ended interview, each participant is
asked the exact same sequence of questions in the same tone and manner. A combination
of these three types of interviewing techniques was used to conduct this study.
Data Collection
The first step of data collection for this study was obtaining approval from the
University of Southern California’s (USC) Institutional Review Board (IRB) for the
protection of human subjects. Once IRB approval was granted, this study included
extensive interviews with seven individuals from the adults with autism community,
and/or their caretakers. One individual, HT2, did not participate in the interview due to
expressive communication limitations, so his brother, Dr. H., served as proxy to give the
appropriate information. Participants in the study were given an overview of the study via
telephone or email prior to completing the in-person interviews and each participant was
given notice that s/he would receive an email with an attached consent for participation
form (Appendix F).
When possible, interviews were video recorded. Video recordings create unique
opportunities for analyzing social action and interaction in natural settings while
providing contributions to observation practices and method (Heath, Hindmarsh, & Luff,
2011). Because of the difficulty individuals with ASD can have in their social
communication practices, recording interviews with them was beneficial for the
researcher in the analysis and interpretation of interview outcomes. Video recordings did
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 70
also “allow for multiple takes on the data—to explore different issues on different
occasions, or to consider the same issue from multiple standpoints” (Heath, Hindmarsh,
& Luff, 2011, p. 6). Having the ability to record both the individual with ASD’, and
his/her caretaker, should s/he have one, allowed for a rich observation of the support
service experience.
There were two interview protocol instruments. One protocol was developed for
the adult individual with ASD, should his/her communication skills enable him/her to
participate in the interview (Appendix A). The second interview protocol instrument was
for caretakers of an adult individual with ASD (Appendix B). When the communication
or cognitive abilities of the adult with ASD were not strong enough to field the interview
questions with descriptive answers, consent was asked of the caretaker of the adult with
ASD, and an interview took place with that person, as was the case of HT2. Consent
forms for the interviews were provided to all interviewees prior to the experience through
email or standard mail (Appendix F). Consent and release forms for the video and audio
recording of the interviews were provided at the same time (Appendix E). Pseudonyms
were provided for each of the participants, and they were informed that their interviews
would be reviewed or shared for research or educational purposes only. After the video
and audio data was collected, the digital files were encrypted with a password and stored
on an external storage device. They will be stored for three years before being destroyed.
A speech-to-text transcription software named “Dragon for Mac” was used to transcribe
the text of the interviews.
Each interview protocol was divided into three main sections. The first section
was made up of standardized open-ended questions which assisted in the determination of
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 71
social capital statuses. These included questions regarding levels of education attained,
family income, ethnicity, community and organizational affiliations, English as a primary
language, age, and occupation. The second section of the interview protocol involved
open-ended questions regarding the participant’s experiences in accessing employment
related services as an adult with a medical diagnosis of autism. The third and final section
of the interview protocol involved questions regarding the participant’s experiences in
accessing health care related services as an adult with a medical diagnosis of autism.
For participants who consented to be video and audio recorded and who were
within 100 miles of the researcher’s home research institution, University of Southern
California in Los Angeles, California, were invited to choose a location of their own
liking, local to them, in order for the researcher to go to them and conduct the interview.
In keeping with this accommodation, one interview was conducted in Bakersfield,
California. The interviews were coordinated with the purpose of creating an interactive,
personal, and collaborative environment (Creswell, 2007).
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 72
Data Analysis
In the course of qualitative research, Marshall and Rossman (1989) put forth that
data collection and data analysis need be a simultaneous action. Therefore, for the
purposes of this study, data analysis and data collection occurred simultaneously. Data
for this study was analyzed based upon a phenomenological approach of interviewees. A
phenomenological approach to research attempts to explore, describe, and analyze
meaning in individual lived experiences (Marshall & Rossman, 2011). Patton (2002)
states this approach is concerned with “How they perceive it, describe it, feel about it,
judge it, remember it, make sense of it, and talk about it with others” (p. 104). Interviews
based upon this approach typically involve several long in-depth conversations with
individuals who have experienced the phenomena of interest (Marshall & Rossman,
2011) to discover the commonality of themes across similar experiences. For the
purposes of this study, any adult with an ASD or caretaker of an adult with an ASD who
attempted to obtain support services in employment or health care, and could be
contacted, was interviewed vis-a-vis the phenomenological approach so as to decipher
themes within the experiences of trying to obtain support. This approach centered on
“thick description”, such as a rich, detailed description of people and places (Denzin,
2001 as cited in Patton, 2002 p. 438). Data was then coded, field notes transcribed, and
prepared for reflection and review.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 73
Chapter Four: Findings
The qualitative method of analysis used for this study was that of “narrative
analysis”. At the core of the narrative analysis approach is “the ways humans experience
the world” (as cited by Merriam, 1998) and as a research technique, it contextualizes data
collected by presenting it in story, or narrative, form. This technique of analysis is based
on first-person accounts thereby used to establish a narrative “text”. The qualitative
method of analysis takes the raw research data of interview responses and composes it
into themes. These themes are then constructed as a means to organize raw data.
This chapter begins with a description of the sample, continuing into a discussion
of progress made within the research process. This presentation of the data provides a
summary of the themes observed during analysis of the data collected. A description of
each participant, or his/her proxy, is then given to detail information such as gender,
ethnicity, age, medical issues, current medications, and general approximations of
income. Each participant was given a narrative section within the data set where only
relevant themes from his/her individual experience were presented. This formatting was
chosen to remain consistent with the narrative approach, and establish a general “story”
for each individual. Overall themes were then contextualized by applying them to
relevant frameworks. A summary of each individual’s relevant themes concludes each
section.
This study obtained qualitative data from interviews with seven adult individuals:
five adults with ASD and two adult caretakers, both legal conservators, who served as
proxies to answer interview questions. These individuals served as proxies because they
had considerable knowledge about the ASD individual’s life experience. Interviews were
conducted using one of two interview protocols (Appendices A & B). Protocol One was
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 74
designed specifically for the adult with ASD (Protocol 1, Appendix A), while Protocol
Two was designed specifically for the caretaker of the individual with ASD (Protocol 2,
Appendix B). Protocol One consisted of twenty-six questions for adult individuals with
ASD, while Protocol Two consisted of twenty-five questions. Some questions within
each protocol had follow-up questions to gain further insight into the initial question, so
the specific number of questions asked is different for each protocol.
Participants
The participants in this study were segmented into one of two categories: 1) an
adult individual with an ASD, or 2) a parent, conservator, or caretaker of an adult
individual with an ASD. When an individual with an ASD was unable to communicate
verbally due to cognitive deficits, or when his/her answers may have been more “off-
topic” than “on-topic”, a parent, conservator, or caretaker was asked to participate in the
interview sessions so as to glean more information about the individual with ASD’s
situation. In total, there were eight participants in the study, and seven interviews were
conducted. Only one individual with ASD, HT2, was unable to be interviewed due to
lack of communication and comprehension skills. The participants took part in
approximately one-hour interviews with the Primary Investigator (PI) in order to obtain
“thick descriptions” of their individual experiences. The following introductions are brief
descriptions of each of the participants. At the conclusion of the description, a label of
each participant’s social capital status, low, middle, or high, is also appended. The
determination is based primarily on socio-economic factors, but identifiers such as
primary language and whether or not the participant had insurance were also considered
as well. Because there is no empirical standard for these determinations of social capital,
the determinations listed for each participant are not meant to be considered standards.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 75
Participant 1, OG, a 52 year-old Latino, is the father of OG2, and works in the
Information Technology field. Two people, including him, currently reside in his
household. OG has a Bachelor’s degree and currently makes less than $23,000/year,
which is the current federal standard for the poverty level in the United States. OG did
participate in an interview for this study. His social capital status is identified in this
study as low.
Participant 2, OG2 is 23 years old, a Junior majoring in Business at a college in
Southern California, and is an adult with an ASD. OG2 is the son of OG. OG2 is
approximately 5’7” tall, 230lbs, and has a history of asthma for which he occasionally
uses an albuterol inhaler. He does not exercise on a regular basis, though, for a time, he
participated in Tae Kwon Do as a means to assist with his asthma. OG2 identifies himself
as Latino. OG2 does not currently have health insurance, but can receive treatment
through the university he attends. OG2 did participate in an interview for this study. His
social capital status is identified in this study as low.
Participant 3, SC is Caucasian, a retired school principal, and is the father and
conservator of study participant “Sofia”. He currently assists members of his church in
securing scholarships for aspiring college students. SC has a master’s degree, owns his
own home, and makes more than $50,000 per year. Four people, including him, reside in
the household with SC. SC did participate in an interview for this study. His social capital
status is identified in this study as high.
Participant 4, Sofia, an adult with an ASD, is the daughter of SC, is Caucasian,
and is currently employed at her family’s printing business in Southern California. She is
twenty-seven years old and lives at home with her parents and younger sister. Sofia has
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 76
no current medical concerns. She plays racquetball weekly with a personal instructor as a
means of getting exercise. She takes Prozac as a mood stabilizer. Sofia receives health
insurance as a dependent of SC. Sofia did participate in an interview for this study. Her
social capital status in this study is identified as high, though this identification is based
on her family’s associations and conservatorship status.
Participant 5, Dr. H. is a thirty-five year old pediatrician in Southern California.
His ethnic background is Vietnamese/Chinese. He is a co-conservator for his younger
brother, HT2, who is an adult with an ASD. Dr. H attended medical school, owns his own
home, and makes more than $50,000/year. Two people, including Dr. H., live in the
household in which he resides. Dr. H. did participate in an interview for this study. His
social capital status in this study is identified as high.
Participant 6, HT2 is a twenty-four year old adult male with an ASD and is the
younger brother of Dr. H. HT2’s level of autism is identified as severe, and he is largely
non-verbal with an expressive vocabulary of about fifty words, according to his brother
and conservator, Dr. H. HT2’s ethnic background is Vietnamese/Chinese. HT2 is 5’5”
tall, approximately 180-190lbs, and has the following current medical conditions:
seizures, diabetes, obesity, and oppositional defiance disorder. Future medical concerns
include obesity-related issues. Currently, HT2 is taking the following medications:
Benzothiazepine, Klonopin, Clonazepam, Valporic Acid, Invega, and Tegretol. HT2 has
medical insurance coverage through Medi-Cal and Medicare, and is insured under his
parents’ insurance plan. HT2 currently lives in a group home for the developmentally
challenged, though not all of the individuals at the home have autism. He has been
removed from several group homes due to his aggressive behaviors. His brother, Dr. H.,
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 77
describes HT2 as “very loving and happy” but “not knowing his own strength”. HT2 did
not participate in the interview for this study due to expressive communication and
comprehension challenges. Dr. H. served as HT2’s interview proxy. His social capital
status in this study is identified as high, though this identification is based on his family’s
associations and conservatorship status.
Participant 7, Eddie is a twenty-three year old Caucasian male undergraduate
student in Southern California. He is currently employed on a part-time basis working as
a research assistant for a college professor, though the work he does is uncompensated.
He is told the work will lead to a permanent position in the future. He lives on his own in
an apartment in Southern California, though, presently, all of his expenses, including
tuition costs, are covered by his parents. Currently, Eddie has one serious medical
concern: a gastro-intestinal issue which is undiagnosed, persistent, and causes great
discomfort. Eddie has yet been able to find a doctor who has been able to identify the
issue accurately and treat him for his symptoms. Eddie takes Klonipin for social anxiety,
and Concerta as an anti-depressant, as indicated by Eddie himself. Besides the gastro-
intestinal issues, Eddie feels he has no other medical concerns. He receives health
insurance coverage from his parents, who are both college professors on the East Coast.
United Health care is his insurance provider. Eddie lives with one roommate and has an
income level below $23,000 a year. Eddie did participate in an interview for this study.
His social capital status for this study is identified as high.
Participant 8, AH is a fifty-three year old male with an ASD of Asperger’s
Syndrome that was not diagnosed until his mid-40’s. He is 6’2” and weighs
approximately 210 pounds. AH is a Caucasian male who is employed full-time as a
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 78
professor at a college in Southern California, and part-time as a freelance writer. He rents
a home in Southern California, which was the location for the interview. Although he
rents the home on his own, he typically has 1-2 roommates living with him at a time. His
income is above $50,000 annually. Current medical concerns include high blood
pressure, high cholesterol, and depression. Medications AH is presently taking include
Trazidone, Zoloft, Buspar, Valium, and Ambien. He is fully insured under the medical
plan at the college where he is employed and states he receives “excellent” health care.
AH did participate in an interview for this study. His social capital status for this study is
identified as medium, due to his lack of willingness/ability in engaging social contacts for
desired resources.
Table 1
Participant Social Capital Matrix
Participant Individual with ASD
or Caretaker
Occupation Ethnicity Age Education/
Income
Social
Capital
Status
Design
ation
1. OG Caretaker/Parent of
OG2
Information
Technology
officer
Latino 52 GED, college
classes;
Income-
below
$23,000/yr
Low
2. Dr. H. Brother/Conservator
of HT2 (HT2 is 24,
male, is severely
autistic and lives in a
group home)
Pediatrician Vietnamese/
Chinese
35 Medical
School;
Income above
$50,000;
Owns his
home
High
3. SC Caretaker/Conservator/
Parent of SC2
Principal,
retired
Caucasian 51 MA.Ed,
Income above
$50,000
High
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 79
Table 1, Continued
4.AH Adult with ASD College
Professor,
Freelance
Writer
Caucasian 54 College
graduate; rents
home; income
above
$50,000/ year
Medium
5. Eddie Adult with ASD Research
Assistant
Caucasian 23 High school
diploma;
current
undergraduate
student; less
than
$23,000/year
High
6. OG2 Adult with ASD Student Latino 21 High school
diploma;
current
undergraduate
student; less
than
$23,000/year
Low
7. Sofia Adult with ASD Executive
Assistant
Caucasian 27 High school
diploma; less
than $23,000/
year
High
8. HT2 Adult with ASD N/A

Chinese/
Vietnamese
24 High school
Certificate of
Completion;
Unemployed;
less than
$23,000/year
Medium

Two frameworks were applied in carrying out this study. The first was Aday and
Andersen’s (1974) access to health care framework (Figure 1). This framework denotes
entry points to health care, and, thereby, can be used to establish a context for when
access cannot be gained to health care.

SUPPORT ACCESS BARRIERS ADULTS WITH ASD 80

Figure 1. Aday & Andersen (1974) Access to Health Care Framework
The second framework is Stanton-Salazar’s (2010) framework for Institutional
Agents. This framework identifies key roles individuals can inhabit as they do, or do not,
open doors to resources which may not be available directly (Figure 2).
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 81

Figure 2. Institutional Agent Framework, Stanton-Salazar
Table 2
Health Care Matrix
Individual
with ASD
Age Weight Height Medical
Concerns
Medications Insurance

1. HT2
(male);
brother of
Dr. H.
24 180-190lbs 5’5” Seizures,
Obesity,
Diabetes,
Oppositional
defiance
Benzothiazepine,
Clonipin,
Clonazepam,
Valporic Acid,
Invega, Tegretol
Medicaid
and Medi-
Cal
2. Sofia
(female);
daughter of
SC
27 145-155lbs 5’5” N/A (though
SC concerned
at fast weight
gain)
Prozac Yes
(Provider
not given)
3. OG2 23 230lbs 5’7” Obesity,
Asthma;
Depression
Albuterol LA Care/
Healthy
Families
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 82
Table 2, Continued
4. AH 54 210lbs 6’2” High blood
pressure;
Anxiety;
Depression
Ambien, Buspar,
Valium, Trazidone,
Zoloft
Yes
(Provider
not given)
5. Eddie 23 160-170lbs 6’1” Gastro-
intestinal
issues
(undiagnosed
and untreated);
Depression
Clonipin, Concerta United
Health
Care
Partners

Interview 1: OG
The following interview was conducted with OG in a library in Southern
California. OG presented himself as very relaxed before and during the interview. He
seemed comfortable, jovial, and even eager in sharing his personal experience. The only
hesitation that seemed to come from OG was that, in answering some of the employment
questions, he seemed somewhat nervous about the potential prospects for his son's future
employment, and therefore his son’s ability to take care of himself independently as an
adult.
Employment barrier themes. Research Question One asked what perceived
barriers exist in acquiring support services for adults with an Autism Spectrum Disorder
in the area of employment.
Core deficits of ASDs as employment barriers. The core deficits of autism fall
into three major areas: social functioning, communication, and ritualistic interests
(Gabriels & Hill, 2007; Grandin, 2004; Lord & Bishop, 2010). These core deficits can
affect all aspects of an individual’s life, including his/her career. The following is an
example from OG of how he feels OG2’s perseveration on a socially-based experience
could affect his future job performance,
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 83
One particular time, he came home very emotional, and I could tell. And I went
with him and said, hey, what’s wrong, something’s wrong. Tell me. He just
started crying. He goes, I just went up to this girl, we were walking to the same
bus stop, and I just went by and I said, hey, how are you? And she stopped and
looked at me and said, “Don’t ever talk to me again”. And so he felt rejected for
not doing anything, just for saying hello. I think he, ever since that happened, he
withdrew more. He became more introverted. He didn’t want to associate. He
won’t go hang out with people. He found some friends. He had a few friends…
But it may still be hidden inside, it may come back out, if something like that
happens, where he’ll be focused, only on that problem, only on that situation
where it happened right there, which may make it difficult for him to do his other
jobs if he’s focused on what somebody else did to him instead of just letting it go.
Lack of job skills training in high school. Another theme which emerged within
the current study is the lack of job training and job type experiences in high school.
Individuals with autism typically benefit from visually-based instruction or from the use
of social stories which serve as direct instruction aides (Moyes, 2001). Therefore,
opportunities to have job experiences in high school do not serve as luxuries of
experience prior to graduation, but as effective models to base job skill instruction. The
following are examples of the lack of job skills training theme from OG's interview:
PI: Did your son have any job training in high school? Did his school have any
programs to help him prepare for employment?
OG: I don’t believe so. I think they were more prepping him for college. So he’d
be ready to go to college. I took him where I was working a couple times. I went
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 84
to XXXX College, and I was working there also. So, he would meet me there
after school. I showed him what I did with the computers. I would help him, or he
would help me move computers, plug them in, troubleshoot. So he kind of saw
the way I worked. And then, at another location, it was called XXXX Studios. He
came up there a couple of times. I showed him how to pull wire, check phone
lines, set up the phone. He set up a couple of phone lines for me. I showed him
how to tap into it, set up the network, so he kind of got the gist of how to work.
PI: If you happen to remember OG2’s IEP in high school, do you happen to
remember any employment related goals that might have been tied to his IEP
(Individual Education Program)? Do you happen to remember anything about
that?
OG: He wanted to get a job. He was looking for part-time jobs. I suggested to him
he could go around the neighborhood and go to different stores, different shops.
Lack of job skills training in high school and say, hey, can you hire me just for an
hour or two, I’ll come in and sweep and clean some stuff up. He never did
because of his autism - he was basically studying.
PI: Has OG2 ever had a job where he wasn’t under your supervision? Has he had
an independent job yet?
OG: No.
Lack of exposure to employment related “soft skills”. Employment-related soft
skills can be described as the unwritten rules of non-verbal communication within the
workplace (Simone, 2010). Even though there are no “hard and fast” rules to non-verbal
communication, being able to navigate these rules within the workplace can mean the
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 85
difference between keeping a job and losing a job. Because individuals with autism have
difficulty understanding the non-verbal cues of communication (Gabriels & Hill, 2007),
this can cause minor to great distress for these individuals within the workplace. The
following quotes are examples of how these unwritten rules of communication could
potentially affect OG's son at a future workplace. One of the things that was noticed
during this discussion with OG was that he seemed to genuinely feel that his son had
matured through his college experience. This maturity had helped him become more
confident in social abilities. However, as will be noted in the interview with OG2, his son
did not share a similar amount of confidence in his ability to navigate social relations
with others:
PI: Do you feel like the skills that OG2 has, in terms of his skills and abilities, do
you feel when he goes on these job interviews that these jobs might overlook the
skills that he does have. Do you feel like the jobs may focus on the quirks, if he
has any, as opposed to the skills that he does have?
OG: Yes. He gets nervous when he talks to people. And that’s one of the things I
tell him. Calm down. Practice an interview, so he doesn’t get nervous. And he
stumbles with words. So it’s not so simple. The way I’m talking he has to back up
and think a little bit. So, I always tell him: think, speak slowly, and just remember
what you’re saying. That way people don’t try to notice that you’re autistic.
Because, some people speak slow, and everything’s normal. And the person that’s
interviewing you is perceiving that you’re normal, so as long as you can keep
talking to them and answer their questions honestly, they’ll hire you.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 86
PI: Do you have any concerns when he starts working, about any sort of social
relations with his co-workers?
OG: I used to, but, this moment, I’m more optimistic than pessimistic. I think he
will do fine working with other people. There may be a couple that… he won’t
get along with, just like the rest of us, but I think he’s matured the past couple of
years being at college, and away from home.
PI: So you think it’s the experience at college, the experience has helped with the
maturity so he feels a little bit better with his social relations?
OG: Yes, he’s shy, like most of us are, but because of his autism he’s a little bit
more and he feels that he can’t be accepted at the same level as everybody else.
Prohibitive costs for job related skills exposure. Even though the discussion with
interviewees seemed to describe a paucity of available resources for employment for
individuals with ASD, there were still resources that were available. However, it was
noted in this interview with OG that at least one of the resources that could have provided
meaningful exposure to job skills was associated with prohibitive costs. A lack of
available resources, in addition to high costs associated with the resources that are still
available for employment exposure, creates limited opportunities for individuals within
that ASD community to take part in.
OG: We followed one location through Stephanie’s Day. I don’t know if you’re
familiar with them. CBS [network] sponsors it because one of their executive’s
child had autism, has autism, and they’re a big executive. They can do what they
want at the studio. They found out that there were more parents in their
community, that their kids were autistic, so they had Stephanie’s Day when they
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 87
would invite advocates and other people to help out not with just autistic, but with
disabled people, ranging from little kids to adults, and they would have a fair out
at CBS Studios, and it comes around once a year… The executives get the jobs
from different places - Paramount, Goldwyn-Mayer, wherever, they bring some of
the jobs they say, this is what these people want, and the kids do some of the basic
stuff, and then they send it up, and then they get paid. So they say that, even if
they can’t get a job in the real world, they can always have a job there.
PI: And this is through Exceptional Minds?
OG: Yes, I think it’s in North Hollywood or in Sherman Oaks. It’s through them.
They have a website which is pretty cool. And OG2 wanted to get into it for the
summer, but, they want $1000 and right now I don’t have $1000.
Lack of available employment resources for adults with ASD. Another factor
which contributed to employment barriers within this interview was a lack of available
resources and opportunities for employment. If individuals are unaware of where to find
opportunities for employment, or resources to help them identify where these
opportunities may be, it will be more difficult for these individuals to attain employment
and maintain independent lives. The following quotes support a lack of resources
available for individuals with ASD to begin their employment search:
PI: So when you’re looking for more information and you want to stay more
informed about jobs, or job support services for OG2, where would you go for
this information? What might be a good place to turn or to look? Would you go to
the Regional Center, do you have friends that you know that are involved in the
autism community, or somewhere else? Where do you get your information from?
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 88
OG: I Google it. I go to Google, I put in autism, help, jobs, and they usually send
me to government agencies. LA County. I’ve read up on some things with them.
CA Dept of Rehab is another one that, they’re supposed to help with anybody
with any kind of disability. I think the resources are out there. There’s not an
abundance, but there’s some where you can get the first step. Yeah, where you
can get your foot in the door, and then I think you really just gotta shove yourself
in there. Because they’re going to make it easy for you.
Health care barrier themes. Research Question asked what perceived barriers
exist in acquiring support services for adults with an Autism Spectrum Disorder in the
area of health care.
Income thresholds for low-income insurance consumers. Without employer
supported health insurance to cover health care costs, caretakers and families of adults
with ASD must find alternate ways to obtain health insurance. In California, insurance
for families with low income is provided by the state in a program called Medi – Cal.
However, even this program presents difficulties for families of those who may have no
other option of health insurance coverage. Because health care related themes can be
interpreted within the health care framework used for this study, the Aday and Andersen
(1974) framework for access to health care is applied to each of the health care themes.
With respect to income thresholds for low-income insurance seekers, this theme could be
categorized under a heading of “characteristics of the health delivery system”, with a
subheading of “structure”. The Aday and Andersen framework describes “organization”
as what the system does with its resources, with the components of organization being
entry and structure. “Structure” concerns “the characteristics of the system that determine
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 89
what happens to the patient following entry into the system” (Aday & Andersen, 1974, p.
213). The following quotes serve as supporting examples of this categorization:
PI: Through which agency, insurance provider, if any, does OG2 currently get his
access to health care?
OG2: Right now, none. It was Medi-Cal, but they just stopped it because I told
them that I was working. So, I have no insurance with that company, so I just
have to play it by ear right now. But he’s got enough inhalers that I got enough of
that. And at the school they provide him with medical attention for whatever he
needs, so he’s good for that.
Eligibility criteria for state and government support. Because there are many
different state and federal agencies and services that seek to help individuals obtain
health care, different agencies and services will have different eligibility criteria to access
the services they offer. Because this is the case, an individual may qualify for a particular
service at one agency and not qualify for the exact same service or similar service at a
different agency. Additionally, when the service runs out at one particular office or
agency, it may be necessary to obtain continuation services from another agency.
However, this new agency may not have the same eligibility requirements, and, therefore,
not honor the intent to obtain the service. For reasons such as these, it was asked within
the interview process whether or not individuals encountered different eligibility criteria
at different state and federal agencies and services. The following is commentary on what
was found regarding eligibility criteria for state and government support:
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 90
PI: Up to this point have your tried getting any employment support from any
federal agencies? Or state or local, community agencies? Any government
programs?
OG: No, not right now. We tried to get SSI (Social Security Income) for him
twice but that was rejected. Once they said that I made too much money. The
second time they said I made too much money and that his autism was only
temporary. In their letter they said, not in so many words, they said you need to
prove that this disability is a permanent disability. And I went back to them and I
wrote that I had turned the paperwork from the doctor saying that it is a
permanent disability. They never responded back, so. OG2 says that he wants to
focus on trying to get it himself. We have an attorney that we can go to, through
the Regional Center, and she’s just on hold for right now.
PI: When you went to SSA and then a different state agency or community
agency, did any of these agencies, when you went to any of these different
agencies, did they have any sort of different eligibility criteria? Like, we’ve got
this service and we’ve got this criteria, and if you went anywhere else to get the
same service, did they have any sort of different criteria?
OG: I’m sure they do. California state- they’ve got their own set of criteria. Even
LA County has their own criteria of disability. He could probably get some sort of
assistance from the state faster than he could from the County. And I think the
federal is probably even tougher. You probably almost have to be dead to… But
I’m amazed like he his, because we see that there’s so many people out there that
they have no noticeable disability. They’re out there talking and joking like
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 91
normal people, but yet they’re collecting [from the government]... It depends
maybe on the paperwork, who their doctor is, what the wording is in the
documentation. I tried to do it myself instead of going through with an attorney…
Maybe all that has something to do with it, I’m not sure. All I can do is try it
myself. And I’ve told him sometime when he’s ready, we’ll get an attorney…
Concerns for changes in eligibility criteria for autism diagnosis as defined by
the DSM-V. The upcoming changes in the DSM –V, the Diagnostic Statistical Manual,
fifth edition, will outline a new definition for what it means to be autistic, as defined by
the scientific and medical communities. Some individuals within the autism community
expressed concern for this new definition for autism because individuals who are now
considered “high functioning autistic” may no longer be categorized as such. Therefore,
this could end services previously available to them. Primarily, this may be of great
concern for individuals who are considered high functioning, as is the case for OG's son,
OG 2. This theme could be categorized, within the context of the Aday and Andersen
framework (1974), under “health policy”, which they describe as the starting point for
consideration of the access concept. The following segment of the interview supports
how this new definition from the diagnostic statistical manual could affect individual
lives:
PI: Do you have any concerns that these new criteria might affect any of the
services that OG2 might get? How it might affect his health care or anything like
that.
OG: A little bit. Even though his case is mild, but they may say, you’re not
considered now. It’s going to be extremely mild, or whatever. So he may miss it
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 92
by a point, or even a half a point on a scale, even if they have a scale like that.
That bothers me a little bit, but gotta deal with it. But some people don’t want it
changed. They want it changed back to the other way, so they’re trying to petition
it I believe.
Awareness of changes in the Affordable Care Act of 2010 and how these
changes could impact health insurance coverage and availability. The Affordable Care
act of 2010 requires every individual in the United States to obtain health insurance by
the end of 2014 or pay a tax penalty (House of Legislative Counsel, 2010). This new
sweeping law will affect millions of Americans in the United States, but also has great
potential to affect those who are least able to obtain health insurance coverage - namely
those of low-income statuses or those whose incomes fall below the Federal Poverty
Level (FPL). Because there is potential for great impact in low-income communities, and
for low-income individuals, it may be highly important that they be aware of how this
law could affect their lives in their search for health insurance coverage. Because OG
stated during the interview that his current income was below $23,000, the level defined
by the federal government as the current poverty level, OG was asked what he knew
about the law, and the implications of its going into effect. The following were comments
which support the probings of this question:
PI: I don’t know… If you’re aware of anything that might be in the Affordable
Care Act or Obamacare that might change health care access for OG2. I don’t
know if you’ve heard about any discussions or anything like that. Any changes
the health care act might have for him?
OG: No, I haven’t really heard anything.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 93
Social capital network barrier themes. Research Question Three asked whether the
activation of social capital networks influences success rates of obtaining support
services in employment and health care.
Activating institutional agents on behalf of individuals in search of an
employment or health care resource. An institutional agent is an individual who has the
capacity, means, and commitment to transmit, directly or indirectly, institutional
resources and opportunities (Stanton – Salazar, 1997; Stanton-Salazar, 2010). These
individuals can be important to opening doors not be otherwise available to individuals
seeking a resource that they do not have direct access to. Generally, these individuals are
accessed through social capital networks, which correspond to residential and
occupational segregation by class, race, or gender (Stanton-Salazar, 1997). One of the
research questions of this study aimed to determine if accessing social capital networks
make certain resources available to individuals and families, which they themselves may
not have had direct access to. The following commentary is data which supports the
findings of this research question:
PI: Have you ever asked anyone that you know to help you get a particular service or
support, for a job, or where to go see a doctor?
OG: For myself? No. Actually, for a job, I think I did, where I was working before.
But they didn’t have an intern program, so it didn’t work out, which was fine. But
my boss still said, look, bring him in, we’re at a different location than they are.
They’re not going to see him, so, and that’s fine. And that’s why I took him to work
with me and he learned about the cables, and hooking up the phones here and there.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 94
Impact of income affecting the ability to access social capital networks. One of the
implications of social networks is that, generally, they are accessed in a horizontal
fashion, meaning that individuals and groups of similar gender, race, income levels, and
occupations access resources on behalf of each other. This is not to say that accessing
institutional agents does not happen in vertical fashion, but it is likely a more limited
phenomenon. As previously mentioned, income level is a factor which contributes to
social capital networking. Therefore, it is relevant to determine income levels of
individuals with ASD and their families to determine whether their social capital
(income) networks are capable of helping them open specific doors which hold specific
resources. Such a linkage, within the Stanton-Salazar institutional agent framework,
would be categorized as “direct support” from someone who could provide personal or
positional resources to others. The following is data which contributes to the findings
summary:
PI: This last one, answer with your own level of comfortability. Would you
describe your level of income in the home as more than, less than, or equal to
$23,000?
OG: Right now, less. It’s been hard. It’s been hard the last few years.
Summary of Interview 1: OG
There is a saying within the autism community, "when you meet one person with
autism, you meet exactly one person with autism". This saying essentially reflects themes
discovered within the participant interviews. Although there were general themes
reflected across all interviews, each participant expresses their own unique themes and
statuses which give an individual coloring to each participant. The following themes
emerged within OG's interview with respect to employment related barriers for
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 95
individuals with ASD: 1) core deficits of ASD's as employment barriers 2) lack of job
skills training in high school 3) a lack of exposure to employment related "soft skills", 4)
prohibitive costs for job-related skills exposure, and 5) lack of available employment
resources for adults with ASD.
The following themes emerged within OG's interview with respect to health care
related barriers for individuals with ASD: 1) income thresholds for low income insurance
seekers, 2) eligibility criteria for state and government support, 3) concerns for changes
in eligibility criteria for autism diagnosis as defined by the DSM –V, and 4) awareness of
changes in the affordable care act of 2010 and how these changes could impact health
insurance coverage and availability.
The third and final research question had to do with social capital networks and
whether these networks presented barriers or access opportunities for individuals within
them. The following themes emerged within OG's interview with respect to social capital
network barriers: 1) activating institutional agents on behalf of individuals in search of an
employment or health care resource, and 2) impact of income affecting the ability to
access social capital networks.
Interview 2: OG2 (son of OG)
The following interview was conducted with OG2, a junior at California State
University, Bakersfield. The interview was conducted at a library on campus, and OG 2
offered his time freely to take part in the interview. He did not seem nervous or
enthusiastic about giving the interview, but was very calm at all times, except at points in
the interview when he discussed social relations with other individuals on campus. OG 2
showed great anxiety over his ability to interact with others in a "normal" fashion. He
seemed very disappointed at the fact that he had few friends, and that social relations
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 96
were not easier to manage for him. The following quotes from the interview are data
findings for the three primary research questions.
Employment barrier themes. Research Question One asked what perceived
barriers exist in acquiring support services for adults with an Autism Spectrum Disorder
in the area of employment.
Core deficits of ASDs as employment barriers. Issues with the core deficits of
autism can, and do, affect almost every aspect of everyday living for adults with an ASD.
With respect to the interview with OG2, it seemed as though his difficulty in connecting
socially with peers while at college was affecting OG2’s academic life and his personal
life as well. The despondency he displayed in his answer to the question regarding health
care called into question the degree to which degree he could enjoy his college
experience, if he felt he had few friends, and fewer people who would accept him
because he was overweight. The following responses were considered data consistent
with the theme of core deficits of ASD as employment barriers,
PI: Could you tell me what year you are in college, and a little bit about what your
life has been like here at Bakersfield?
OG 2: Year three. So far to make friends, I haven't really been able to
communicate with them due to the fact that – my appearance, and how I look, it's
basically they don't know the half of me, as in what I feel inside.
PI: So you're saying it's been difficult for you socially to adjust. Bakersfield.
OG 2: It also depends on what I see. Through them and their body language
towards me, and also their secret emotions towards me. It's unknown at this point
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 97
for socialization overall, but I have been communicating and acting like a normal
person as possible.
PI: Do you have any sort of communication or sensory issues that might make
getting or keeping a job difficult?
OG 2: I would have to say unknown. I have been trying to read through texts and
the Internet, but as far as I can tell I need to work on my vocabulary, and all have
to memorize the words my own, correctly and what they mean.
PI: Do you have any sensory issues that would make getting or keeping a job
difficult? For example, do florescent lights bother you? Do loud noises bother you
a lot?
OG2: Fluorescent lights no. Loud noises, if they get really loud.
PI: How would you describe your health right now and do you have any illnesses
or ailments our areas of pain that give you concern for your current health?
OG 2: As far as I can tell my dad had a serious back injury and knees but as for
me, it's just me being overweight which is maybe because I'm just alone. And I'm
starting to realize I'm sick and tired of it, and [unintelligible speech] is the only
one who is friends to me. But at the same time it's slowly killing me. So I might
as well just try, try, and try to lose weight and to be skinny.
Lack of exposure to employment related “soft skills”. Soft skills such as,
understanding how to “sell yourself” during an interview or engaging in “small talk” are
skills which can frustrate an individual on the autism spectrum. Because these skills are
communication based, it can be difficult for them to navigate the social cues that
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 98
individuals not on the autism spectrum take for granted. The following quotes are data
which support the theme of lacking exposure to employment related “soft skills”,
PI: you mentioned you and your dad are working on your resume. How long,
since January 2013, would you say you have been looking for a job?
OG 2: I would have say close to the end of 2012, but I'm starting to think I would
have a job this year because I went to an event on how to do well on interviews,
job resumes, even watching MTV U which is a show on how to do well the
interview looking for a job.
This response showed that OG2 had a lack of perspective on what it would take to
get a job, in addition to the fact that he had little experience or exposure to job related
skills - especially the “soft skills” which are required on the job.
Lack of exposure to job skills or job training in high school. Having experience
“on the job” can be invaluable to someone on the autism spectrum. It gives them the
opportunity to refine skills which they may have deficits in, whether they are
communication-based or socially related, each of which are skills that are categorized as
core deficits for individuals with autism. The following quotes are data which support the
theme of lacking job skills training and/or exposure to work experience,
PI: Have you ever had a job before?
OG 2: Not completely. It's mostly volunteering in career service. I mean
community service.
PI: Can I ask where have you volunteered?
OG 2: The last one I can remember was to assist my dad and his friend Edgar to
help unload a 60-foot truck trailer that contains a lot of stuff of boxes furniture,
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 99
backpacks that the employees carry. It took almost the entire day to do it. And
also storing it in the storage, and also returning the U-Haul truck to the location
they gave it to us for rental service. All in one day. Another thing I forgot to
mention was to bring the stuff to the location from where the family feud location
was located at. It was crazy.
PI: You said that you went to an event looking for a job, was that at XXXX
College?
OG 2: Yes. Twice. It was located at the XXX Hall which is at the front of the
library, and another was at the dining commons, which was two days ago I
believe.
PI: Can I ask what sort of information you learned at the event?
OG 2: Put your GPA if it's a 3.0 or higher. This is what my dad told me: look at
the mirror, talk about which are going to say, show your expression, and also to
dress as nice as possible.
In this last response, it does not seem that OG2 learned any specific interview
skills, or was presented an opportunity to practice a mock interview at the event- either of
these skills would likely prove valuable to an adult with ASD. That he was given no
goals or instructions before he attended the event also seems likely. Because individuals
with ASD have splinter skills (Gabriels & Hill, 2007) in executive functioning, OG2 was
probably at a loss as to what he should have been doing at the employment event.
Because of this lack of specific goals or instructions, he also likely lost out on an
opportunity to build his resume and develop his interviewing skills repertoire.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 100
PI: Did you have any job training in high school? Any experiences where you are
able to go to a job training center? Or any sort of job placement centers that had
training in high school?
OG2: Not that I remembered.
PI: What sort of skills, or attributes, that you have you feel would be assets to a
business or company?
OG2: To have a mentor at least. If I can recall an email that my dad saying I should
have a mentor to help me. To help out.
OG2 may have meant to say he believed he should have a mentor available to him
on the job, as a sort of job accommodation, but he did not fully express this idea.
Mentorship on the job for individuals with ASD is a concept which will be discussed
briefly in Chapter 5 as a helpful on-the-job accommodation for employees who may be
on the autism spectrum, “PI: What about you? What do you feel like are your strongest
skills that you could provide to a company? OG 2: Honestly I don't know at this point.
I'm learning as I go.”
This final quote emphasizes the idea that OG2 does not realize what his skills and
strengths are as an employee. If that is the case, then he may also lack the ability to
emphasize such skills on his resume, and a job interview as well.
PI: I know it may have been a few years since you graduated high school, but where
you very familiar with your IEP in high school? Did you know a lot of the
accommodations? And goals that you had on your IEP?
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 101
OG2: Not that they've told me anything about, but I have my personal goals through
the Department of Rehabilitation. About being a game developer. I may have done
so on my IEP but I possibly don't remember. Since I am kind of on my own.
PI: Do you remember if you had any goals in your IEP that were related to
employment?
OG2: Not that I remember. I think my dad still has a copy because XXXX College.
Health care barrier themes. Research Question Two asked what perceived
barriers exist in acquiring support services for adults with an Autism Spectrum Disorder
in the area of health care.
Lack of knowledge and experience in navigating the insurance system for low-
income families. For individuals on the spectrum with no health insurance, the task
of finding insurance providers can be problematic. Although there may be options for
coverage, determining the eligibility status criteria through the different providers may be
complicated. This proved to be the case for OG2, in that he and his father were unable to
determine that their original insurance provider was still providing service that which did
not allow for them to receive desired services through a new provider. The following
quotes serve as data for the theme of conflicting health insurance eligibility for low-
income recipients:
PI: Another health care question. Can you tell me what to what agency, employer,
or insurance provider if any do you currently receive access to health care?
OG2: First of all, last year my LA Care is expired because of recent events I've
tried to see the doctor, but, unfortunately, like I said earlier before this recording,
that first time ever trying to go to the doctor with the active LA care service, but,
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 102
unfortunately, it was conflicting with my old service, Healthy Family. Next, we
tried to do it again, but, unfortunately, they didn't activate it at all my and dad was
furious. This year, I wanted to see if I could create my own health care since I am
older, but I think we might do that over the summer when I go back for vacation.
PI: I think you mentioned this earlier but I'll ask again because it's another
question on the list… Do you have any health-related issues right now that give
you any pain or discomfort for which you are not receiving any sort of medical
treatment?
OG2: Asthma. I have an inhaler and it's under control. I have a little trouble when
I'm back in LA but here it's basically clean-air up for the harvest season.
PI: When you have a doctor’s appointment can you tell me what mode of
transportation you might take to get there?
OG2: We've been changing doctors ever since I was little. At first we’ll travel on
the bus – no, no – in a car. Then, as time progresses, we went to take the bus all
the way deep down in Pico which is a few blocks close to the convention center.
It took like two hours to see the doctor. It was ridiculous. And then we went to a
Korean clinic which is a few blocks away from my house, and then we went to
where the little shopping center is and there happened to be a clinic right there,
Which is right next to the post office down the street to my house. And, like I said
earlier, there have been complications in the health insurance. So, we may try to
go there again but this time with a fully active, non-complicating, non-confliction
of health insurance fully activated LA Care.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 103
PI: You mentioned something about conflicting insurance can you expand a little
bit about that? About how it conflicted and what your other insurance conflicted
with?
OG 2: Healthy Family. That was before we switched to LA care. And we thought
we got rid of it for good but for some reason it stuck around.
Based on the statements provided by OG2, it seems there are at least several
options for low-income health care insurance, but knowing how to navigate within the
insurance system where these options are available is also an important concept.
Summary of Interview 2: OG2
Based on the interview with OG2, several themes emerged relevant to the topics
of inquiry. Among the emergent employment themes were core deficit challenges of
ASD, lack of exposure to employment related “soft skills”, and a lack of job training in
high school and exposure to work experience. With regard to the health care barrier
themes that emerged, a lack of knowledge with regard to navigating the low-income
insurance system was the dominant theme. As for questions relating to OG2’s social
capital network, he did not express answers which indicated he called on friends, or
people he knew, to help him. Therefore, social capital themes were not detected.
Interview 3: Dr. H
The interview with Dr. H. was conducted in a hospital office in Southern
California. Dr. H. was relaxed during the interview and was very forthcoming with his
answers. It was noticed during the interview that a typical level of formality was not
engaged in during the interview due to a history of three to four years of friendship that
existed between Dr. H. and the interviewer. However, it was unclear if the friendship
added any depth to the answers that were given in the course of the interview because Dr.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 104
H. has a nature of direct speech that typically borders on bluntness. Dr. H. is a kind man,
and jovial, and the interview was conducted in a friendly, but professional manner. It
should be noted that the interview was conducted with Dr. H. and not his brother because
Dr. H.’s brother has a designation of autism that is moderate to severe, including a
severely limited repertoire of expressive speech numbering at approximately fifty words,
as indicated by Dr. H. Also, because of the severity of HT2’s autism, he is unlikely to be
employed in the future, according to Dr. H. Therefore, the majority of this interview
focused on health care options for Dr. H’s brother, as opposed to employment.
Health care barrier themes. Research Question Two asked what perceived
barriers exist in acquiring support services for adults with an Autism Spectrum Disorder
in the area of health care.
Impact of autism severity on access to health care. The severity of an
individual’s autism can directly affect their need to access health care. Because one of the
core features of autism is difficulty with communication and social interactions, if one is
unable to communicate experiences of pain, locations of pain, or be able to describe
clearly what specific symptoms they may be experiencing, provision of service by a
medical practitioner would be affected. The following quotes serve as data for evidence
of this theme,
Dr. H: The severity...I think the severity…I think HT2 would be moderately
mentally challenged. If I had to guess, his IQ is in the low 60s. So he would
have, for example, he can feed himself, he can speak maybe 3 word combination
at most, he probably has about 50 words expressively, his receptive language is
better and I think he would know almost every object, abstract things obviously
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 105
tougher for him, for example he can’t bathe himself, he always needs help in the
bathroom…he has aggressive behavior…some of them are with known
triggers…some without known triggers…which are obviously much tougher. I
would say that most of them are known triggers which is a good thing. He’s so
ADHD…he’s one of the most hyper kids I’ve known and I’m a pediatrician…so
I’ve seen other hyper kids.
Dr. H: So we were, when HT2 turned 18, multiple people kept telling us, “you
have to get conservatorship, you have to get conservatorship”. Honestly at that
point I didn’t know what that is, what that meant, and I was like, well, who will
get conservatorship? Will it be my parents? Will it be myself? Because, for
doctor’s visits, if they want to change a med- who’s going to make that decision?
Who would grant that permission? So on a practical basis, they really did need,
you know, need that.
The impact of severity on what decisions are, or are not, feasible for the
individual with an ASD could be considered a key component of health care access. If the
individual is unable to make heath care decisions on his/her own, how should it be
determined who should become conservator on his/her behalf? What information will the
conservator base their decision for different health care issues on? Will these decisions be
based on what is best for the consumer, or possibly whatever financial situation the
conservator and their family may be in? Questions such as these are germane to the issue
of the impact of an individual’s severity on the autism spectrum. These questions also
could be categorized on the Aday and Andersen (1974) framework for health care access
at the entry point of “characteristics of the population at risk”. The predisposing
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 106
component includes the variables the outline the “propensity” of individuals to use
services. The following question about the group home HT2 lived in identified
possibilities of abuse that can take place when an individual with autism is limited in
their capacity for self-advocacy, also a characteristic of the population at risk, according
to the Aday and Andersen framework:
PI: Could you tell me the name of the group home where HT2 was at for a while?
Dr. H: HT2 was at a group home called XXXX. That was in
[Southern California], and that was ok until… Henry was actually abused once at
that group home and we removed him. Because his behavior was…
PI: Physically or sexually [abused]?
Dr. H: Physically. Physically. Physically. I think it was an iron burn. So we found
out after, and we always thought about legal action, but we never got to it, but
obviously we told the Regional Center. But the way we found out, in hindsight,
HT2 was acting up so much behaviorally. He wasn’t trusting anybody, and I think
that had a lot, a lot to do with it.
The following quote indicates that the severity of HT2’s autism has led to him being
removed from several group homes.
Dr. H: So HT2 has been kicked out of like 4 day programs since he’s turned 21,
he’s only 24. He’s currently not attending one. And the reason is, multiple
reasons, non-flexibility of (it sounds like he says ‘nap time’ here, but it’s
debatable, but he immediately follows up with ‘non-flexibility of, for example,
transportation’- which could totally be related to the nap schedule. Something to
follow up with here.). A good example of why he was kicked out last time was
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 107
because he wouldn’t go in to the van that was coming to pick him up, but
obviously they couldn’t wait forever. So then they actually go and pick other kids
up, and they come back one last time, and then he doesn’t go, he doesn’t go. So
he ends up missing more days [appointments] than not.
If the individual with ASD does not have the cognitive capacity to understand the need to
attend scheduled health appointments, or if s/he is unwilling to ride in a car as opposed to
a van because perseveration with vans is a ritualistic interest of the individual, then
maintaining health care access will be limited due to the nature of the individual’s autism
severity. The following quote demonstrates that the nature of an individual’s severity on
the spectrum can be correlated with entering an “institutionalized” model of health care
that is run by the state.
Dr. H: Sadly, the reason that this group home was created was because the state
actually still has a few state institutions left, obviously since maybe the late 80’s
or so have been trying to get out of that model. But the only ones left in there, the
only clients left in there are the really severe ones, and this group home was
created so that they can transition some of the folks who are in the state mental
institutions to be out in the community. HT2 is, for sadly, or for not sadly, HT2 is
in a pretty severe group home, and the rest of his buddies are people who used to
actually, not be in the community.
This next example indicates that, if an individual is moderate to severe in the nature of
their autism, it can be difficult to convince the individual that they need to be seen by a
service provider for health care:
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 108
PI: So when HT2 has a doctor appointment what mode of transportation do you
use to take him?
Dr. H: The group home. The group home is pretty good at taking him. I think
the tough part is more the coaxing in getting him to even go to the office. So
probably the most extensive things that me and my other brothers have done
would be…is the… the wake up at 4…go make sure he takes the medication with
a little bit of water and nothing else. It will be a whole day thing…it literally is
because I don’t know when he’s going to be seen.
This final quote that emerged with this theme leads to a possible assumption that, if an
individual is found to be more severe on the autism spectrum, s/he may possibly need to
be medicated more, as is the case with HT2. Even that if an individual with a severe
condition of ASD and has a health care appointment, there are no guarantees that the
appointment will take place:
Dr. H: Again, there are some advantages to being in a group home, including, like
for example not necessarily the doctor’s office, what if, you know, he’s on 7 meds
and you need to get a lab check. (40) Try to go to Quest lab and say you got a kid
with autism and you want to poke him and you have a time slot…you know, good
luck.
Lack of framework existence, or health care policy, for adults with ASD health
care planning. As of this writing, no national policy exists for adults with ASDs, and
insurance coverage options state-to-state vary widely (National Conference of State
Legislatures, 2012) . Without the presence of a national policy for access to health care,
health outcomes for adults on the spectrum may vary as widely as the insurance coverage
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 109
options state to state. Within the Aday and Andersen (1974) framework, a lack of health
care policy would be categorized under “health policy”, under the subheading of
“organization”. This framework identifies the existence of health policy as “the starting
point for consideration of the access concept” (p. 212). The following quotes serve as
evidence for this specific theme,
Dr. H: And I will give you an example that I think speaks to maybe not
necessarily employment or health care but this transition to adulthood. I think that
the tough part, that schooling for the most part for kids with autism is ok, it’s
pretty good, but once you become an adult, what do you do? So what about the
ones that can’t be employed?
Lack of quality service and provider options for care. One of the
elements that is lacking in terms of quality health care for individuals with autism is
provider choice (Sutton & DeJong, 1998). In having limited options for health care, the
individual may also be limited by the quality of care they will receive, in that it is also
likely not every provider of service will provide quality care. If providers are unfamiliar,
or unwilling, to provide service to those who may be more severely affected by autism,
such as those who may have aggressive behaviors, need to be coaxed into examinations,
or lack the communication skills necessary to describe symptoms, then these patients are
less likely to receive the kind of care they need. This lack of provider options would be
categorized under “enabling factors” within Aday and Andersen’s (1974) framework.
Enabling factors within the community, according to this framework, include available
health personnel and facilities. The following quote indicates Dr. H’s position that he is
unsatisfied with the available service options for his brother:
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Dr. H: I visited some of these programs. I think a lot of times I think you’re doing
just an adult babysitting service, or are you going to learn more goals? And I think
it’s really sad. And I think what the closest what I mean by any sort of
employment. He was in one of them when part of the activities, so what they
wanted the folks in that day program to do, is to make lunch packages, or to
package things for community service, for homeless people. You know, and I
think that’s really good, and in that program, they have another areas where folks
who were a little more capable were actually baking breads.
Dr. H. also cited unmet needs within the community of adult autism, and felt that the gap
in service for dental issues was considerable:
PI: So right now what do you see as the major unmet needs for Henry in terms of
what’s available for adult service-wise?
Dr. H: I think service-wise, in terms of health care, I think the insurance, at least
for us, we’re pretty fortunate. It’s pretty well taken care of, but the dental is
always a huge gap. And I would think that that’s something not even touched
upon that much, but for most Americans to have regular insurance, a lot of them
don’t even have the dental aspect.
The following quote indicates that Dr. H. would like to see more educationally-based
goals for his brother, but more importantly, it indicates Dr. H. would like someone to be
available to work with his brother one-on-one due to the nature and severity of his
brother’s needs:
Dr. H: Right now we’re trying to transition him, into more of a, instead of a, day
program meaning that there is actually a place he goes to that has certain set
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 111
activities we’re actually setting up with the regional center a 1-to-1, where like, in
the morning they would go out, because I think the more activities he does out in
the community, the more actually he is less prone to act up. But it really is a very
short, like a two-hour, like a one-hour… So in a way there kind of no true set
educational goals, in a way, I don’t think he needs that. I think what he needs is
how to incorporate himself, and how to behave himself in public, or in various
social situations like, go to Starbucks. But I think that is important. I think that’s
what we’re working on right now. Otherwise, he sits at home.
Without quality options for education and training for the more severe individuals on the
spectrum, there are very few options for these adults besides “sitting at home”, but just
trying to find providers for care is an issue, as the following quote indicates:
Dr. H: And another thing is just trying to find providers. I’ll give you an example.
The dental part. Most people unless you would have to encounter this, you would
never know this, or need to know this, that there are not many dentists who would
like to take care of kids, or adults with autism. Because the way most clinics are
structured is, you go in, you come out. They want to see as many patients as
possible. You know, how are you going to do it when half your days are coaxing
that patient to go sit on that chair? So another one, there’s only one in the Valley,
in Diamond Bar, in which there’s a dentist who actually flies in from San Jose,
twice or three times a month, but the only way you can get an appointment is
extremely hard, and it’s literally first come-first served, so literally at 6am in the
morning there are actually clients lining up, and your appointment is just [on] that
day, it’s not a slot, because again, it can’t be that strict. And you better be there
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 112
early. The tough part would be that most of these kids are young adults, or adults,
need anesthesia, so you can’t eat, so you’re going to go by 6:15am, so maybe
they’re four people, or eight people ahead of you. That means your brother’s not
going to be seen until twelve noon, and good luck telling him he can’t eat until
then. So even just little things like- so it’s just little things like that, how does one
even find a… it’s kind of word to mouth…
Getting referrals for specialist care can be a unique issue for individuals with autism.
Because the individual may not be convinced, or coaxed, into going to the doctor,
sometimes the doctor may need to come to them. However, as Dr. H. describes, even
getting the referral for specialist care can be difficult and time consuming:
Dr. H: The reason to make the psychiatrist come is worthwhile also… is if you
have more than one client that he/she can evaluate…that might make a home visit
more practical…the other ones…HT2 has seizure which definitely is more of a
neurology problem than a psych problem. Even that we’ve been to places like the
county…which is fine but, it takes the whole day. It will take four months for an
appointment on that end.
Lack of adequately trained staff to work with the target population. Gerhardt
and Lainier (2011) found a 2003 Department of Health and Human Services report
pointing to a 50% turnover rate for programs serving adults with developmental
disabilities, multiplying the effect of the already present 10-12% of staff vacancies. The
report would go on to say that, in any other industry, this number of vacancies and lack of
adequately trained staff would be labeled as “crippling”. This lack of adequately trained
staff would be categorized under “enabling factors” within Aday and Anderson’s (1974)
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 113
framework. Enabling factors within the community, according to this framework, include
available health personnel and facilities. The following quote describe that, although
there are staff who are trained to work in facilities with individuals with autism,
information on the nature of the training, or even whether or not the training is specific to
individuals with autism, is not shared with families:
PI: So when you get your information on the different group homes, do they give
you much information about the staff, and the training that the staff has to
undergo?
Dr. H: Yes and no. I think, again, I just went through this more recently. Because
I moved HT2 to a different group home, one that’s closer to my parents. Even
though if group homes are the same letter, you can see that there’s quite a number
of different qualities to it. They are supposed to take this almost like a training
course, kind of like, behavior modification, meaning that the if obviously patient,
the kid, the adult is aggressive, is violent, how do you subdue the client without
hurting him or her? So for sure they’re all certified in that, but I don’t know how
many hours they have before starting. I don’t.
Prohibitive costs associated with health care access. Prohibitive costs exist in
the American health care system. These prohibitive costs can often mean limited
pathways for low-income families, such as 1) lack of ability to afford initial care that they
need, so care is inaccessible at the outset, or 2) once the initial care has been secured, the
cost is so high that individuals and families are unable to afford necessary care in the
future. For these reasons, having health care that is affordable for vulnerable populations,
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 114
such as individuals with ASD, is important so that they are able to access the necessary
care to have healthy, productive lives.
PI: So when you’re actually paying for the services of the group home does that
come out of some insurance program? Does it come out of pocket for your
family?
Dr. H: Yeah, mostly is actually paid for by the East Los Angeles Regional Center
and we do actually pay a portion of it but our portion of it is nothing like the state.
The state pays the regional center which pays the group home. And I gather that
our portion is like a co-pay…like a 10 percent of what the total cost would be.
PI: Do you have any idea what a bill for maybe one month or a week would be?
Dr. H: I think a month at this group home, probably a reasonable estimate is about
$4,000.
Although Dr. H. and his family are in a position that the large majority of health care for
HT2 is covered, costs for his brother are high and might not be managed so well if the
insurance situation was different. Even so, some services are beyond the scope of what
the insurance pays for, as in indicated in this quote about psychiatric services,
Dr. H: I think his health situation we have to divide into two categories. I think
one would be psych/behavioral or psychology/psychiatry of which he’s on
multiple meds for his ADHD and for his oppositional behavior. So one, even
getting a psychiatrist that would see him…and by the way a psychiatrist is about
$200 an hour out of pocket. And we’re the ones to find someone that would see
him…especially if he won’t go to the office and he has to come to the home.

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Impact of the Affordable Care Act. Major provisions of President Obama’s
Affordable Health Care Act of 2010 will take effect in early 2014 (House of Legislative
Counsel, 2010). With health care costs for adults with autism estimated at over $3 million
dollars over the course of their lifetime (Ganz, 2007), this population will need access to
health care coverage in order to handle paying for necessary services. At this point, how
the Affordable Health Care act will affect adults with autism is unclear because empirical
studies have not yet been done. However, knowledge about the impending changes the
Act will bring could be helpful in assisting families navigate the upcoming changes.
Within the Aday and Andersen (1974) framework, the impact of the Affordable Care Act
would be categorized underneath the heading of “health policy”,
PI: In what ways do you expect or might expect the Affordable Health Care Act
to influence your brother’s health care access? Do you think it will change it at
all, open any doors, do you think it will close any doors?
Dr. H: I think for him…it would not change so much immediately, but I do think
it will change a lot in the long run because I do, again….suspect that his Medi-
Cal, Medi-Care in particular is completely dependent on my father and so when
my father one day passes away, what’s going to happen to this adult kid short of
paying fee for service? Which I think is quite prohibitive for anybody quite
frankly. I think that’s where the Affordable Health Care Act comes in you know,
even if you…you’re not denied because he has a list of conditions and that
basically there is something that he can buy or that we can even help him buy,
you know, for it. In the long run, that has to be what eventually kicks in.

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Social capital network barrier themes. Research Question Three asked whether
the activation of social capital networks influences success rates of obtaining support
services in employment and health care.
Relationships with institutional agents, and the networks that weave these
relationships into units can be understood as social capital… The value of social capital,
as a concept, lies in the fact that it identifies properties (or laws) of social structure that
are used by actors to achieve their interests (Stanton-Salazar, 1997, p. 8). Social capital
can be used, effectively, as a currency to open doors to resources individuals or families
may not be able to open themselves. Therefore, calling on others within your social
capital network can be useful if resources are heretofore unavailable. Such was the case
in several instances with Dr. H and his family as the following quotes from the interview
demonstrate:
Activity in support groups and ethnic associations. Ethnic associations can serve
as powerful bonds within and among ethnic groups. The resources they could provide to
members are various and include emotional and financial support. For the purposes of
this study, ethnic ties to the Chinese and Vietnamese community provided an opening for
Dr. H. and his family to receive information about special needs issues for members of
the South Asian community in Southern California. Within Stanton-Salazar’s institutional
agent framework, the function this group serves, based on their ethnic ties to one another,
is that of “integrative support” vis-a-vis a “cultural guide”, whereby others are taught to
identify and interact with key people in a cultural sphere. Institutional agents within this
group would also serve as “knowledge agents”, according to the Stanton-Salazar (2010)
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 117
framework, who could access or provide knowledge pertinent to navigating one’s way
within the system.
PI: Have you ever asked anyone that you know to help you get a particular service
or support? Like, where to see a doctor?
Dr. H: You mean like, how would I know where are the providers that will
specifically be a little more tolerant servicing people with special needs?
PI: Exactly.
Dr. H: Actually many. Including… I think when I was younger, we were
definitely more on the receiving end of just any information. And my mom
belonged to, even though she’s not much of an active member, in the San Gabriel
Valley, there actually is a group of parents, mostly Asians, that meet, basically,
parents of special needs kids. And they do have a support group out there.
Language barriers, English as a non-native language. Being able to
communicate with one’s physician is a key component in receiving quality care. In this
way, signs, symptoms, and descriptions of bodily or emotional issues could be given
freely and, hopefully, well-described from patient to physician. When a language barrier
exists, recipients of health care can likely undergo gaps in service which can affect long-
term health outcomes. Such a gap in service, according to the Aday and Andersen
framework (1974) would be categorized under “characteristics of the population at risk”,
under the sub-heading of “predisposing” factors. Predisposing factors include “age, sex,
race, religion, and values concerning health” (Aday & Andersen, 1974, p. 213). The
following quotes support this theme,
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PI: How did your family actually make the decision of who should get the
conservatorship, because obviously you’re one of the [four] children in your
family, and both of your parents…
HT: I’m the eldest. And that’s actually not true that my parents don’t have…You
can actually have co-conservatorship. So that’s also something that’s good to
know. That you can have more than one party having conservatorship. And I
think it was because I’m the eldest, my parents speak limited English, and I’m the
one that is local, so it was easy that I’m the natural choice.
Navigating relations with case managers and service providers. Dr. H indicated
in his interview that, though he had a professional relationship with his brother’s case
manager, it was more of an informal relationship due to their working together over the
years, and the perceived need for closer attention to HT2’s needs because of the
allegations of abuse at the group home. The following quotes serve as examples of how
the nature of one’s relationship with case managers, such as institutional agents, can
influence the number and quality of access points to institutional resources:
PI: Could you talk a little bit about your relationship with the Regional Center?
Who your contact is over there? If you’ve had many different service providers?
Or consultants you’ve had to work with?
Dr. H: Over the years we got better…. I think like in the beginning…partially
because I was in school and my mom again…not knowing enough English that
we didn’t even know who our social worker at the Regional Center was and
maybe once annually we would go for a meeting on an annual report on how
HT2’S doing…to now that I think we’re a little bit more proactive and I think
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 119
again, that’s more a little bit after HT2’s abuse case that we really, really wanted
to keep a closer eye on it. We got to know the people at the Regional Center
making sure that things are being done…including annual physicals, and you
know, really at the Regional Center is like a two-tier system. The [case] manager
and I’m sure he or she is super loaded with cases and then there is a supervisor
above and we got to know both relatively well.
Summary of Interview 3: Dr. H.
The interview with Dr. H. highlighted themes which pertained primarily to health
care and social capital, as his brother, HT2, is unable to be employed. General themes
that emerged during the interview included the impact of the Affordable Care Act,
prohibitive costs associated with health care access, the lack of adequately trained staff to
work with the target population, and the lack of a framework, or health care policy, to
deal with adult health ASD issues. Dr. H’s perspective as a medical service provider
added an extra layer of perspective to the interview, as he was able to offer insight from
both a consumer and provider perspective. Some of the unique themes that emerged
during the interview with Dr. H. were the impact of severity on access to health care,
activity in support groups and ethnic associations, language barriers, and navigating
relations with case managers and service providers.
Specifically, the impact of severity on the access to health care was most
intriguing because the severity changed the dynamic of how often, and why, the health
care system would need to be interacted with. It was also of note how acutely aware Dr.
H. was to the reality that there is currently no transition framework for adults with ASD
as they leave high school. Once they leave, you are essentially on their own and the
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 120
prospects can be intimidating for individuals and families all along the spectrum, even if
you do have social capital and institutional agents you can call on for assistance.
Interview 4: Sofia (daughter of SC)
Sofia is a 27 year-old adult with autism who lives with her father “SC” (also
interviewed for this study), her mother, and her younger sister in Southern California.
Sofia is Caucasian, and is currently employed at her family’s printing business in
Southern California. Sofia has no current medical concerns besides a tendency to gain
weight quickly, as indicated by her father. She plays racquetball weekly with a personal
instructor as a means of getting exercise. She takes Prozac as a mood stabilizer. Sofia
receives health insurance as a dependent of SC. The interview was conducted in her
family home.
Sofia was rather excited during the interview and very talkative to the point that
some of her answers seemed either off-topic, or slightly incoherent. Her father would
later recount that she was very excited to have someone from a university take an interest
in her. Sofia is a very kind girl. When giving a tour of her home, she and her father
displayed with pride the many trophies, “boy-band” pictures, animal pictures, and family
pictures Sofia had in her room. She was deeply proud of the work she does with her
family in their printing business. Sofia was very happy to take part in the interview,
smiled often, and was very expressive during the interview. At times it was slightly
difficult to keep Sofia on-task with questions that were being asked, but she was attentive
to the questions, and did her best to answer all questions as accurately as possible.
Although Sofia would likely be considered high functioning in her life skills, it was
difficult to determine how much of an understanding she had about initiating and
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 121
maintaining her own health care. Because of this, the segment of questions pertaining to
health care and payment for health care was overlooked in this interview.
Employment barrier themes. Research Question One asked what perceived
barriers exist in acquiring support services for adults with an Autism Spectrum Disorder
in the area of employment.
Core deficits of ASDs as employment barriers. As core deficit issues can play a
role in an individual with an ASD being hired or fired from employment, they are
significant considerations in employment seeking for adults with ASD. During the
interview, Sofia often made brief eye contact, and then turned away to avoid making eye
contact. She often looked off in an opposite direction, or up towards the sky while giving
responses to interview questions. The following quotes from the interview serve as data
for the first research question. The first answer was in response to a question about
having sensory issues, and whether these issues make getting or keeping a job difficult:
Sofia: Oh yes, I really am sensitive… A little less with the sounds. … Well,
whenever I hear too much noise on the other side of the printing press, it sounds
like something crashed or something. That disturbs me a little bit, but I get used to
a lot of noises, so I’m used to everything that almost disturbs me a little bit. But
I’m pretty good at getting used to everything, so…
Lack of exposure to employment related “soft skills”. The next theme which
emerged during the interview had to do with the amount of job skills training Sofia had
before getting her job at the family printing business. The following quotes are responses
consistent with the theme of having exposure to work skills and job training during high
school and college:
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 122
PI: So let me ask you this, did you have any job training in high school that you
remember? Or in college? Did you attend college?
Sofia: I didn’t attend regular college, I did attend a junior college. XCC. XXXX
Community College. I had a lot of training. Whenever I go out, we would go out
with a group from FACTS. I got a lot of training at Pet Co, with all the cute little
animals. You know, with all the cute little birds, the little Chinchillas, the little
mice. You know how I love rodents. And cute little kitties.
At this point, there was an attempt at follow up by asking for more information about this
particular FACTS program at the community college Sofia attended, but her answers
tended to drift somewhat off-topic. The following quotes are responses to the follow-up
questions about the FACTS program:
Sofia: No I really think. We really just go through this whole thing. It’s like going
to school. We just do a lot of different stuff. Whether it’s community day,
cooking, or when we have to go do our job work. You see, I considered taking
training at PetCo. You see, I love animals. Because I have a cat in this area. I did
a lot of work, if you want to know why, working in that area. And then after that I
decided to do work up at the hardware store. I worked at ACE hardware. Of
course I really enjoyed my time at ACE hardware. I did a lot of cleaning and all
that kind of stuff.
PI: When you worked at PetCo, was that part of the program with XXXX
Community College or was that something you set up with your family?
Sofia: Well, the FACTS program teachers, they set it up. The people at the stores
and that kind of stuff. Actually we did a little bit of volunteering with the
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 123
company. Whether it’s ACE or PetCo, or volunteering at the “XXXX”
[neighborhood] Y, all of that kind of stuff, so I took up volunteering there at those
places. It was really awesome. I did volunteering at the XXXX library for a very
long time.
It was clear she loved working with her family, and the work that she did for her family,
but if that safety net were not there for her on the job, it is unclear whether the job
experience be as satisfying for her?
Obtaining information about autism or autism-related services. It has been
mentioned previously that there is a lack of services currently available for the adults
with ASD population. Something else that was discussed during the conversation about
available services related to information about autism or autism-related services. The
following quotes are data which are consistent with this theme. Sofia was first asked
where she obtained information about autism or autism services:
Sofia: Usually when I’m watching tv, I might see a commercial about that. So
that’s how I see that.
PI: So you usually get your information from watching tv. Do you ever check the
internet?
Sofia: Yes, I really do. I have my own laptop.
PI: Do you know what websites you might go to check out?
Sofia: Yes, I find whatever might be a health organization for any treatment, for
any kind of medical problems that kids might actually get. Whether they might
have ADHD, autism, or any of that kind of stuff.

SUPPORT ACCESS BARRIERS ADULTS WITH ASD 124
I think it becomes highly relevant to ask individuals with ASD, their family member, or
caretakers about where they get their information about autism related services. Directly
asking the community that is being served where they get their information is a means to
aggregate data, and streamline information sources. This could be an area of future study.
When asked about health care and health care related issues, it was noticed that
Sofia did not know much about the specifics of this particular area. She stated she had a
weekly standing appointment with a doctor. It was later determined, after speaking with
SC, Sofia’s father, that this was a weekly psychiatrist’s appointment. However, Sofia was
unaware of costs for service, how the insurance worked, or any related minutiae that went
along with the appointment. For these reasons, the health care research questions are not
attended to in this interview, but are addressed more in the interview with her father. The
remaining quotes deal with the social capital research question of the study.
Social capital network themes. Research Question Three asked whether the
activation of social capital networks influences success rates of obtaining support
services in employment and health care.
System linkages and networking support. Sofia mentioned during the interview
that her father worked closely with the University of Southern California. Most likely,
this affiliation would be categorized as a “system linkage and networking support” theme
within the Stanton-Salazar (2010) institutional agent framework. Such an affiliation could
label her father as any one of the following roles within this category of the framework:
1) recruiter 2) bridging agent or 3) institutional broker, or coordinator, where any such
role could potentially open doors to relevant services for Sofia. The following quotes
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 125
were deemed consistent within the theme category of “system linkage and networking
support”:
Sofia: And my dad has been big with USC, worked with the Board of Governors,
but then stepped down. And now we are working with the Rossier School of
Education. Actually raising money, raising money for all the students by doing
stuff for all the charities of football for football games. When it’s homecoming,
we do fundraising for all the money. Now to consider all that stuff, all the fun we
have, it’s all in the Trojan family way.
Such an affiliation could potentially open doors to employment or health care access, but
no direct correlations to access were described during this interview.
Summary of Interview 4: Sofia
Sofia’s interview highlighted several themes, mostly related to employment: 1)
core deficits of ASD as employment barriers, 2) a lack of exposure to employment
related “soft skills”, and 3) where individuals obtain information about autism related
services. One emergent theme within the social capital framework appeared, and this was
system linkages and networking support. Sofia’s interview in this study was interesting
from a research standpoint for three main reasons: she is female, as ASDs are five times
more common in males (CDC, 2012), her upper socio-economic status, and the ability of
her own family to provide her with a job through their own family business and, thereby,
grant her access to health care. Because of this last fact, Sofia is essentially sheltered
from the process of having to seek an independent job, and navigating the health care
system concurrently.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 126
Interview 5: SC (father of Sofia)
SC is Sofia’s father Caucasian, and is a retired school principal. He currently
assists members of his church in securing scholarships for aspiring college students. SC
has a master’s degree, owns his own home, and makes more than $50,000 per year. Four
people, including himself, reside in the household with SC. SC did participate in an
interview for this study. The majority of SC’s interview has to do with social capital
network themes, though health care and employment are touched upon briefly. The
interview was conducted at SC’s home in Southern California. SC was very relaxed
during the interview, and stated he was happy to share what information he could. The
interview was shorter than others due to being able to bypass many of the employment
barriers because Sofia is employed through her family’s business.
Health care access barrier themes. Research Question Two asked what
perceived barriers exist in acquiring support services for adults with an Autism Spectrum
Disorder in the area of health care.
Prohibitive health care costs. Due to the fact that, socio-economically, SC and
his family are in an upper echelon that makes their family more comfortable financially
than many, they are not severely constrained with regard to being able to access health
care service. However, this is not to say that the frequency of visits for mental health
care, and the out-of-pocket costs for services not covered by insurance are not significant.
When asked whether or not a specialist’s care was covered through insurance, SC
responded, “Usually, we pay out of pocket. There’s some insurance. Some things go for
it, some of her medicines are covered, but most of the visits and things I think we pay”.
When asked for rough estimates in terms of costs per visit, SC commented, “It’s about,
$100/visit, and I would say we do about a visit monthly, so I’d say about $1200
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 127
[annually]”. For SC and his family, these costs can be covered within the family budget.
However, for families not quite as well off financially, paying this amount out-of-pocket
annually could be a prohibitive barrier to receiving this particular service.
Social capital network barrier themes. Research Question Three asked whether
the activation of social capital networks influences success rates of obtaining support
services in employment and health care.
Socio-economic status as a barrier to resources. When the interview turned to questions
that had more to do with social capital, SC made following comments about his
daughter’s education program at school:
SC: What we found, when the kids turned 18, the caregiver… Like the teachers
and such, said they no longer had to talk with us. I was like, well, you don’t want
her designing her own program. We need to do that. So we went through the
whole court. Usually when we meet, we do yearly reports, and I don’t know if it’s
every three years that we actually go back to court. And they check things like her
bank account and things like that, you know. We have a bond. She has her own
private lawyer. We’re able to do that. Most people can’t do that, which is really
sad because this helps us to assist her in making those kinds of decisions. We
even have conservatorship if she were to meet a boy that we could say yes to in a
marriage or no. She hasn’t had any interest so far.
SC’s comment that “most people can’t do that”, referring to being able to have a bond for
future funds which could be used to pay for health care or employment training, indicates
an awareness that the family’s socio-economic status allows them to access resources
some families would not be able to. In this sense, according Stanton-Salazar’s framework
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 128
for institutional agents, SC is acting as a “knowledge agent”, whereby he “knows the
system”, and is able to provide knowledge pertinent to navigating a system not only
where future funds are managed, but decision making rights are transferred from one
party to another.
When asked if SC felt that he found out about more information on various
resources because of his position as a school principal, SC stated that he did not feel like
it had much to do with his position in the community. Speaking specifically about their
local Regional Center, which provides services to individuals and families with
disabilities, SC stated:
SC: No, I want to say that they do it with most of the families. They’ve got a LOT
of kids. To me, I don’t think people realize how many kids are affected by this
and they’ve known me for, well, as old as she is. She’s 27 years old. And I think
that they know that we’re interested in doing stuff like that, and we’ve been on
different committees and things together too, so. But I think that that gets
transferred to a lot of kids. But again, the normal, regular, what I would say LA
Unified [school district] kids are not going to get that.
The part of this statement that SC feels the “LA Unified kids are not going to get that” is
indicative that there is some sort of social stratification going on in the distribution of
resources. SC is not only looking at this distribution as a consumer, but having held a
principal’s position in the community, he also served a role as somewhat of a
“gatekeeper” to provider services. Schools are where most families find out about
available service because they are mandated by the IDEA (1997) Free and Appropriate
Public Education (FAPE) provision to provide them. When asked a follow up question on
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 129
how distribution of resources might depend on where one lives geographically, and what
type of access your community has to available funds, SC commented, “SC: Yeah. It
does. And that’s the other shame, is that, why can’t this be open to everybody? It was
always my big thing, thinking, when I retire, well maybe I’ll find some connections and
help the kids in doing this stuff but, I’m still waiting”.
Having social capital can provide leverage to access resources. One of the
things SC’s position in the community, such as social capital status, seemed to do was
open doors to needed resources. When asked how he found out about certain doctors who
may have specialized in autism-related services, he had this to say:
SC: In La Canada they have what we call our “town tutors”, the dentist that
everybody seems to go to, so he came across when we were first given… [the
autism diagnosis]. His name is Skip Baker. If you ever want somebody to talk to
more, he’s a great guy. And he does quite a few kids. Not only kids from La
Canada, but also kids from Glendale, South Pasadena, Pasadena. So he’s kind of
the guru. And then his partner …They’re on every committee that there is, so...
In this instance, one could almost substitute the term “town tutors” for a “resource agent”
or “knowledge agent” within Stanton-Salazar’s (2010) institutional agent framework.
Within this framework, a resource agent provides personal and positional resources to
consumers within the network, and knowledge agents “know the system” and provide
knowledge on how to navigate it. SC’s local community was already integrated enough to
share the resources it had with one another. Because SC’s local community was from a
more affluent background of Southern California, this indicates a larger cache of social
capital, providing him the leverage necessary to access this particular dentistry resource.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 130
Summary of Interview 5: SC
With regard to emergent themes in the interview with SC, three main themes
emerged, one relating to health care access, and two relating to social capital. In health
care, even for families who have stable financial means, costs can still be high for
services, and, depending on how frequently needed the service is, could be ruled out
completely if the service became a financial burden. In discussing social capital network
themes, the two emergent themes were 1) socio-economic status as a barrier to resources,
and 2) having social capital can provide leverage to access resources. A unique theme
within this interview was the issue of how socio-economic status could be a barrier to
resources. By SC’s own statement, which community you live in, and are a part of, can
have a bearing on what services may or may not be accessible to you. He recognized
social status as a barrier to accessing services. Had he not been a principal, and thereby
able to witness discrepancies in resource distribution across school districts, this point
might not have been so clear to him. However, his statements seem to resonate with an
awareness that socio-economics plays a role in resource availability.
Interview 6: Eddie
The following interview was conducted with “Eddie” in a classroom in Southern
California. Eddie presented himself as relaxed before the interview, though somewhat
subdued in tone and expression. He later shared that he was slightly “hungover” and
smoked a cigarette before the interview began. He spoke in a low voice, to the point
where he was difficult to hear at times, but was forthcoming in his answers. He seemed
uncomfortable maintaining eye contact for periods of time, so the interviewer looked
down or away for most of the interview to make Eddie feel more comfortable.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 131
Employment barrier themes. Research Question One asked what perceived
barriers exist in acquiring support services for adults with an Autism Spectrum Disorder
in the area of employment.
Core deficits of ASD as employment barriers. Sensory sensitivity is considered a
major issue when dealing with autism (Simone, 2010) When asked whether or not Eddie
had any sensory issues which may contribute to his not being able to obtain or maintain
employment, he had the following response,
Eddie: Yes. I guess right now this is part of the reason I haven't looked for work,
the main issue I have not been able to complete my degree here is a gastro-intestinal
(GI) issue. My sense of smell has become too good, it's not a good thing. Not as fun
as it sounds. It's very disturbing to me sometimes, or distracting let's say. I know a
lot of people [on the spectrum] have very intense reactions to stimuli. Definitely
communicating over text or email is much easier for me. In order to get my points
across. Like right now, if I was reading your question, I could give you a lot more
information. Thinking in real time can be a bit slower.
Eddie did seem to struggle somewhat with articulating long streams of thought, but to the
interviewer, it seemed outwardly that he might have been nervous, as opposed to, as
Eddie stated, that he was having an overstimulation experience. Another core deficit
issue, Eddie stated, was that he struggled with social anxiety. As mentioned previously,
another core issue with autism is difficulty with social situations and communication:
Eddie: I had social anxiety for ages. I was very depressed for a while. A lot of the
social anxiety fit into the symptoms. It could lean more into the Asperger's. I'll just
get itchy in random places. My skin is a little more sensitive. Usually, when I first
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 132
meet people I have more difficulty with eye contact, but I sort of have come up with
methods of looking at you, and then look away, so I've come up with a way to sort
of cope with it.
It was noticed during the interview that Eddie looked uncomfortable when eye contact
was made for more than a few seconds, and he would turn away. Noticing this, the
interviewer also tended to look away to try and make Eddie feel more comfortable in the
interview situation.
Yet another behavior at the core of ASD is concentration, or perseverance, on a
task, or detail of a task, to the point of compulsion (Gabriels & Hill, 2007). Eddie
mentioned this trait with respect to having difficulty switching tasks, or having to attend
to more than one aspect of a job task at a time,
Eddie: But I think the biggest issue for me is that I have difficulty switching from
one area or interest to another. I guess that's an indicator of why was diagnosed. I
can work 16 hours a day on something very specific, but, if I'm told the next day
that I have to work on an entirely different area, it's painful. I'm just not into it all.
It's weird for me.
Eddie did state that he is currently employed, but, as is indicated in the literature about
adults with ASD, they can often be underemployed (Gerhardt, 2009). This means they
can either not work enough hours to maintain an independent lifestyle, or the pay they
receive is not enough to cover their necessary living expenses. Eddie stated he was
experiencing a form of underemployment in the interview:
Eddie: Right now I’m doing pro bono research for a XXXX professor. She's a
psychology professor. It's at the XXX Information Sciences Institute in [Southern
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 133
California]. We've been working on creating a consortium of energy companies
and educate them as far as cyber security and social media policies. Just because a
lot of the CEOs are much older and are freaked out by people being on Facebook
all the time.
Lack of exposure to job skills or job training in high school. Something that
came out during the course of Eddie’s interview was that he received his diagnosis of
Asperger’s Syndrome much later than these diagnoses are typically given, which is by
three years of age. In Eddie’s case, he was a teenager when he received a medical
diagnosis for Asperger’s Syndrome, as indicated here:
Eddie: I received a diagnosis between my freshman and sophomore year in school
here at XXXX College. It was by a doctor on the East Coast after talking with my
parents for a while, and, eventually, she put everything together. I don't know if
you've seen this yet, but a lot of people diagnose themselves. There's this big
Wired magazine article. They did a little study on it – you can check out different
boxes to talk to people and diagnose themselves with that. Some people
diagnosed themselves with that. I did it. Socially, I’m not as bad as some people,
but I showed it to my doctor, from there she just… It's definitely difficult for a lot
of people to diagnose.

SUPPORT ACCESS BARRIERS ADULTS WITH ASD 134
PI: What age were you when you receive your diagnosis?
Eddie: I guess was 19.
Because of his diagnosis later in life, Eddie missed possible opportunities to receive job
training in high school which could have aided in his ability to secure and maintain a job.
When asked if he received any type of job training in high school, Eddie responded:
No, in fact I wish I had been prepared more in terms of knowing how to deal with
finances. Taking classes in geometry and algebra is one thing, but dealing with
tax forms, budgeting- that's definitely an issue. I definitely have difficulty with
that. Right now I'm working with someone that is a job/life coach.
Though the issue of self-diagnosis presents its own unique questions in terms of validity,
and possibly bias, when presenting them to a medical doctor, the issue of being diagnosed
later in life and missing windows for intervention strategies could be viewed as an issue
in itself.
Missed opportunities for institutional agents supporting employment. Stanton-
Salazar’s (2010) framework for institutional agents identifies key roles individuals can
inhabit as they do, or do not, open doors to resources which may not be available directly
to consumers. One agency which acts on behalf of consumers to get them employment
support services in Southern California is the Lanterman Regional Center. In effect, the
agency itself serves as an institutional agent on behalf of clients. When asked if he had
any affiliation with the Regional Center, Eddie responded:
Not directly. I could seek them out. I could do more pro bono work for this one
company – they’re creating this program for people on the spectrum for U.I.
testing. Do you know what that is? It's for usability.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 135

Due to Eddie’s diagnosis later in life, it is possible he is unaware of the work agencies
such as the Regional Center do on behalf of clients.
Health care barrier themes. Research Question Two asked what perceived
barriers exist in acquiring support services for adults with an Autism Spectrum Disorder
in the area of health care.
Lack of a national health care policy, different eligibility criteria state to state.
When asked which agency or insurance provider Eddie currently received his health care
from, he had this to say:
Through United Health Care PPO. With United Health Care on the West Coast
they pay for ABA (Applied Behavior Analysis) but not on the East Coast, because
there is a big lawsuit. It's the same health insurance company, but, because my
parents live on the East Coast, and they have insurance there. It's a ridiculous
system. I don't know if I would need a traditional ABA therapist. I'm not too
familiar with that. Right now the person who I mentioned I'm working with, my
parents are paying out-of-pocket for that. Probably won't get reimbursed.
The fact that Eddie could receive one type of health care in one state, and another less
adequate form of care in another state, and from the same company, indicates a lack of
formal federal policy that could prevent this specific gap in service. Eddie may not need
ABA therapy, but for a family with a child or adult with more severe behavior issues, the
ability to access such a therapy could make a difference in quality of life. Within the
Aday and Andersen (1974) access to health care framework, a lack of a national health
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 136
policy for adults with autism could be categorized under “health policy”, which is the
starting point for consideration of the access concept.
Prohibitive costs associated with health care access. When asked if he had any
experiences of limitations in his current health care, Eddie responded:
The only thing would be ABA therapy which I don't know would be relevant to me.
It's just annoying. I think the person that my parents are paying for now, I think
insurance should pay for that. Or at least part of that. It's good insurance they have
too. I've had some really expensive G.I. procedures. My parents had to pay for so
even with that it’s still difficult.
PI: For the sessions they’re paying out of pocket right now, do you have any idea
how much they might be paying right now?
Eddie: Too much. It's not inexpensive. But I don't have an exact number.
PI: How often would you say you go to the doctor right now?
Eddie: At least once a week.
Although Eddie did not have an exact number on how much his parents pay for him to go
to the doctor, the fact he has GI procedures done on an intermittent basis is relevant
because the likelihood that such a procedure is inexpensive, even when covered by health
insurance, is unlikely. Additionally, that Eddie is going to the doctor on a weekly basis
only contributes to the rising medical costs he incurs annually. In the Aday and Andersen
(1974) health care framework, this theme could be categorized under “characteristics of
the health delivery system”. Resources, within this access point to the delivery system,
are divided into the labor and capital devoted to health care. If the costs are prohibitive,
then there is likely not enough capital devoted to the current system.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 137
Extensive health records cause confusion, disruptions in service for consumers.
When asked how often Eddie goes to the doctor, he responded,
Eddie: At least once a week. I feel like I have a team now. They say you can be
treated a lot quicker if you have your doctors on the same page with one another. So
that's what I'm trying to do, it's gotten me very interested in electronic health care –
in electronic records. Because then doctors can see – literally I have 300 pages of
records. I've been to the Mayo Clinic. It's been difficult for them to figure out, and
for me to explain with all the different conversations I've had with doctors. It's too
much information.
Because Eddie goes to the doctor frequently and has an issue which has been difficult for
doctors to diagnose and treat, he accrues extensive paper records. According to his
statement above, the depth of his record history is prohibitive for each doctor combing
through his 300-plus pages of medical history to find what may be going on. This is
creating a gap in service for Eddie because he has such an extensive health history that
possibilities to treat underlying issues are being missed, potentially, on a regular basis. In
the Aday and Andersen (1974) health care framework, this could be categorized under
“characteristics of the health care system”, whereby the system is characterized by two
main elements: resources and organization. In this model, resources include the
equipment and materials used in providing health services, such as health records and the
lack of electronic health records.
Lack of a framework for health care needs. An area that is not a barrier in
accessing health care currently, but could present a major problem in the future, was
Eddie’s understanding of how the insurance system works, such as what services are
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 138
available to him, and how these services are paid for. When asked what some of his
unmet needs were with respect to health care, Eddie responded:
I guess if something were to happen to my parents I'm not sure what the insurance
situation would be. And once they retire, I guess that will be in a few years, I have
no idea where to go. I feel very lucky that I was able to find the two people: the life
coach and the psychiatrist because they know more about resources, they worked
with other people. The financial stuff has been an issue.
Presently, Eddie is engaged in the health care system through his parents. They pay for
services, file insurance claims, and, if the need were ever to arise, would likely dispute
claims as well. Eddie states that he has “no idea where to go” if something happens to
them. Without any sort of established framework for what can, or even should, happen
for adults with ASD, they are left to their own devices as to how to navigate a complex
system such as health care. In the Aday and Andersen (1974) framework, this lack of
framework could be categorized under “health policy”, which is the “starting point” for
consideration of the access concept.
Social capital network themes.
Research Question Three asked whether the activation of social capital networks
influences success rates of obtaining support services in employment and health care.
Navigating relationships with case managers and service providers. Because
there are a large number of providers within a health care system, each doctor who serves
as a provider can have a different approach to care, which can ultimately influence a
health care outcome. Interviewees were asked what they knew about the upcoming
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 139
changes in the DSM-V, the diagnostic statistical manual, 5
th
edition, which is used to
diagnose the condition of autism. Eddie’s responses were as follows:
Eddie: I've skimmed through a bit. They have ASD one and ASD 2? I don't think it
makes sense. My doctor doesn't think it makes much sense. It's very difficult to
lump in very severe, moderate, and high functioning, which could be specific
issues. Like for me cooking, or not knowing how to handle finances. That's a big
thing for most high functioning, more so than socially.
PI: The reason why ask is I wanted to follow up with if you had any concerns that
the new eligibility criteria might affect any services or supports or eligibility for
insurance.
Eddie: I was thinking about that. I don't know. I haven't done a lot of research into
it. I know that my doctor would diagnose me with whatever. [He] Would give me
the most help, regardless of how severe it is.
In this statement, Eddie makes clear that his relationship with his doctor is such that he
would be able to receive a diagnosis of autism, regardless of whether or not he met the
specific criteria. Therefore, the relationship he has with his doctor has a bearing on
whether or not he could, in the future, be labeled with a form of autism. This is important
because these criteria could make Eddie eligible for certain services provided by
insurance providers. If the nature of one’s relationship with one’s doctor could be
leveraged to be an entry point to access available services, this could be an important
understanding within the community of autism. Within the institutional agent framework
by Stanton-Salazar (2010), this theme could be categorized as a “system linkage and
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 140
networking support” whereby the doctor/service provider acts as a “coordinator” who
provides or accesses institutional resources and assesses the consumer’s needs.
Knowing how to identify key agents to access services. When asked if he had
ever called on anyone to help him access a particular service, Eddie commented, “Yeah, a
lot of people. Our mutual friend, Sarah, is an occupational therapist grad student. It's hard
to find good referrals. I feel like you have to do a lot of research to do that. I don't know”.
In this statement, Eddie calls out two primary issues: 1) that it can be difficult to find a
good referral for a particular service and 2) that consumers may have to do a lot of
research in order to access a particular service- if they know where to go, or who to go to,
in order to access the information. This being the case, Eddie called on a friend in his
social capital network to help him find a referral for a service. In Stanton-Salazar’s
(2010) institutional agent framework, this friend Eddie calls on plays the role of an
“institutional broker” whereby s/he knows what resources are available and who controls
or possesses them. Being able to call on an individual like this can play a key role in
whether or not a consumer is able to access a desired service.
Summary of Interview 6: Eddie
Eddie’s interview offered a balance of emergent themes in all three research
areas: employment, health care access, and social capital. With regard to employment,
Eddie’s interview highlighted three main barriers to employment: 1) core deficits of
ASDs, 2) a lack of exposure to job skills and training opportunities in high school, and 3)
the missed opportunities for institutional agent support in employment seeking. In the
research area of health care, Eddie’s interview revealed themes of access barriers in the
areas of: 1) a lack of national health care policy, different eligibility criteria state-to-state,
2) prohibitive costs for health care, 3) extensive health records cause confusion,
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 141
disruption in service for consumers, and 4) a lack of a framework for health care needs.
Due to Eddie’s frequent visits to the doctor for mental health, and the inability of doctor’s
to accurately diagnose and treat his GI issues, Eddie’s interview highlights how an
individual can potentially incur large health care bills if able to receive access to the
health care system.
While looking at the research question which sought to identify barriers with
respect to issues related to social capital, two main themes emerged: 1) knowing how to
identify key agents to access services and 2) navigating relations with providers. Unique
themes that occurred in the interview with Eddie were the different health care eligibility
criteria state-to-state, and how his extensive health care record history created issues for
him in receiving health care and his ability to pay for it. Also, Eddie’s relationship with
his doctor, and how the quality of relations between consumer and provider could
influence a potential diagnosis was also a unique theme.
Interview 7: AH
The following interview was conducted with AH, a professor at a college in
Southern California. The interview was conducted at AH’s home, at his request, in order
to make him feel comfortable during the interview. He was extremely gracious with his
time as a host and made many jokes throughout the interview. One of the things that
stuck out during the interview was how open AH was about trials and tribulations he had
experienced. It seemed as if no topic were out of bounds for discussion. This could very
well have to do with the nature of his Asperger’s Syndrome as those with this syndrome
can be known for open honesty, criticism, and general lack of social filters, to the point
that they can often make others uncomfortable or upset them with their comments. The
insurance AH receives through his job was “wonderful”. He, therefore, had no specific
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 142
issues with barriers to accessing services. Because of this, the health care aspect is largely
overlooked in this interview. In addition, AH was similar to Eddie in that he received his
diagnosis of Asperger’s Syndrome, not as a child, but later in life. AH received his
diagnosis when he was approximately forty-five years old. The following themes
emerged during the course of the interview.
Employment barrier themes. Research Question One asked what perceived
barriers exist in acquiring support services for adults with an Autism Spectrum Disorder
in the area of employment.
Core deficits of ASD as employment barriers. During the course of the
interview, AH revealed that he received his diagnosis of Asperger’s Syndrome in his
mid-40’s. In terms of employment, one of the benefits of receiving his diagnosis was
gaining a framework for understanding particular issues which could serve as triggers for
emotional outbursts, “The one thing that was really helpful about the diagnosis was being
able to understand in advance events that would probably set me off”. In employment
situations, one is expected to maintain emotional stability not only for one’s own sake,
but for the sake of other employees as well. Having an understanding that he had an
ASD, and that there may be issues that were prone to set him off emotionally, AH was
able to orient his life to either prepare more fully for those issues or avoid them
completely.
Another barrier to employment was observed during the interview when
discussing the types of jobs which could lend themselves more towards autistic
personality traits. AH stated, “I still think that if you put me in a situation, say, behind a
counter at a drug store where I was dealing with a whole bunch of unexpected people and
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 143
situations, I think I’d have a meltdown within 3- to 4 hours, if that long. I can’t do it. I
can’t be given lots of information and to process it as quickly as all that”. This statement
underscores the importance of routines and the difficulty people with ASD can have with
social situations, especially ones that are unscripted. Difficulty with such situations is a
core issue with autism, and the emotional responses they invoke could serve as barriers to
obtaining employment, in addition to maintaining employment.
Another core deficit issue which could employment prospects for individuals on
the spectrum is their sensitivity to sensory issues. AH would go on to explain:
Overstimulation takes me to near panic. I don’t know how to respond to hostility
or violence or anything like that… I go almost out of my way to avoid any sort of
confrontation, I’m almost a wimp about it. I’ll stand up for myself if I have to, but
in general I try to keep as much in my life as routinized and systematic as
possible.
Needing an environment to stay within the confines of a routine can be very important for
individuals with an ASD. Upsetting these routines and systems can sometimes be triggers
for emotional, or sometimes aggressive, outbursts. The issues core deficits could present
to adults with ASD could also be summed up in this comment about how disturbance of
the routines and systems is likely to cause a problem for individuals on the spectrum:
Do you know the story about Archimedes, the Greek mathematician? When the
soldiers came to arrest him, or kill him, he’d been working with circles. I think
he’s the father of Geometry or something, I don’t particularly like science or math
but I respond to this story. They started asking him some questions and he got
very upset. He said, “Don’t disturb my circles!” and they murdered him. But I
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 144
remember reading that story when I was about 4 or 5 and that was the main thing,
don’t disturb my circles.
A final comment about the theme of core issues serving as barriers to employment was
observed in this comment about what the experience of having Asperger’s Syndrome has
meant to AH in the course of his life:
For me, at least, and I won’t say this for anyone else, this has been a very limiting,
and very anxiety producing, and very depressing condition to have for an awful
lot of my life.. For me it’s definitely been something that’s made me anxious and
bedeviled, broken relationships. It hasn’t been a bowl of cherries.
For AH, dealing with the related issues of an ASD have been taxing, to put it mildly. AH
was reflective to the point of nostalgia while making these statements, and there was a
mild tone of regret in his voice as he was recounting these statements.
Health care barrier themes Research Question Two asked what perceived
barriers exist in acquiring support services for adults with an Autism Spectrum Disorder
in the area of health care.
Length of time undergoing pharmaceutical treatment. The primary medical
barrier that was observed during the course of the interview with AH was the length of
time he had been taking pharmaceutical medication. He stated:
I have been taking anti-depressants since 1989, and I’ve gone off them twice, and
it’s an interesting experience when I go off them because I laugh more deeply, I
think I feel things more deeply, but, finally, the unhappiness is so much that, in
the end, I end up back on them… Because, eventually, I will go back into that
frozen and terrible depression. I’m one of these people that is exceedingly happy
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 145
that SSRIs came along because they allowed me to do a lot of things that I
wouldn’t have been able to without them.
At least two specific issues emerge as barriers to health care access in this
statement. First, the length of time AH was taking ant-depressants indicates that, while he
may not have needed to have insurance in order to receive medications, taking
medications for this long implies a significant cost over time. Without insurance, having
to pay out of pocket for the various medications which he is currently taking, could cause
considerable financial strain. Secondly, AH states that if he is off of his anti-depressant
medications long enough, he enters into a “frozen, and terrible depression”. Such a state
of mental and emotional distress could require access to mental health professionals in
order to pull himself back on track. If access to medications and, consequently, mental
health professionals, is unavailable, this could have significant consequences in the life of
the individual, such as homelessness or encounters with law enforcement. With respect to
the Aday and Andersen (1974) framework, this theme could be categorized under
“characteristics of the population at risk” whereby “predisposing” components include
variables that describe the likelihood of the individual to use services. These components
exist prior to the onset of illness episodes such as a propensity towards depression.
Summary of Interview 7: AH
AH was very reflective of his experience. The fact that AH was in his early 50’s
also lent an extensive amount of experience from which to draw upon. It was clear he had
thought long and deeply about the experiences in his life and what sort of impact his ASD
had on those experiences. The themes that emerged during the course of the interview
were 1) the core deficits of ASD as employment barriers and 2) the length of time
undergoing pharmaceutical treatment. The unique theme that emerged from the interview
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 146
was that of the length of time undergoing pharmaceutical treatment and the implications
this theme holds for mental health and financial stability. AH’s his critical analysis of his
condition, his age and depth of experience, and his willingness to be extremely open
about his experience were incredibly revealing.
Reflection on Findings
Throughout this chapter, the focus remained on adults with ASDs and their
experiences meeting barriers in employment support, access to health care, and how they
navigated their social capital as a means of securing institutional agent support in
accessing resources. Health care access was tied to the Aday and Andersen (1974)
framework, while social capital experiences were tied to Stanton-Salazar (2010) and his
institutional agent framework. There was no framework to underpin the employment
experiences of these adults because no such employment framework for individuals on
the autism spectrum exists. Table 1 provides a visual reference for the different access
points individuals can use to take advantage of the health care system. At the top of the
cross-sectional access points of entry is the theme of “health policy”, which, again, serves
as the “starting point for consideration of the access concept” (Aday and Andersen, 1974,
p. 212). Such a policy does not exist for adults with autism, and, as indicated in at least
one interview with Eddie, unequal conditions of access exist on a state to state basis in
our country. As was underscored in Eddie’s interview, even the same insurance provider
company will have differing policies of access in different states.
Another highlight within the findings was the uniqueness of each individual’s
access to, and experience with, each of the research questions. The popular saying within
the autism community, “when you’ve met one person with autism, then you’ve met one
person with autism” was highlighted in the findings of this study in that each participant’s
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 147
story was unique in the way in which s/he experienced the condition of autism. Some
participants, like AH, had positive experiences with health care because their
employment allowed for near seamless entry points into the health care system. Others,
such as OG2, who were not yet employed and were from a low-income household, had a
more difficult time accessing health care or employment services. The range in
experiences was nearly as varied as their experience of autism itself. Individuals like
Sofia, and her family, were able to use their cache of social capital to tap into networks
which would reveal access to resources.
The frameworks which were used for this study provided a context in which to
view the collected to data and provide inferential understandings of how and why adult
individuals with ASDs experienced barriers to employment and health care. Aday and
Andersen (1974) provide a model which shows health care as integrative and intra-
connected to all its different access points. However, the framework has a hierarchy atop
which sits “health policy”. This is the beginning of the rest of the conversation in health
care access. Without a national policy for access to health care for adults with autism,
they will continue to experience gaps in service state-to-state, and community to
community. The Stanton-Salazar (2010) institutional agent framework serves as a model
of representation to outline how resources can be easily distributed unequally among
communities if individuals have the necessary stores of social capital at their disposal.
When individuals and families experience larger caches of social capital, at a community
level, they can experiences more entry points to desired services. The situation can be
experienced vice-versa for those with lesser stores of social capital. Therefore, learning
how to build, navigate, and spend social capital can be useful exercises until more
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 148
equitable policies for health care and employment support can be established at the
national and federal levels.
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Chapter Five: Conclusion
This study examined the experiences of five adults with an autism spectrum
disorder, two conservators of adults with autism, and one parent who was not a
conservator. Five individuals with ASD were interviewed and discussed their
experiences, while two conservators of adults with ASD, and one non-conservator parent
discussed their experience as well. This study sought to gather evidence with regard to
where these individuals experienced barriers to employment support and health care
access. The goals of this study were twofold: 1) to inspire further research, which could
ultimately lead to the beginning stages of a federally funded national health care policy
discussion/creation for individuals on the spectrum, and 2) inspire research which creates
a framework of transition for individuals with ASD, and into the adult world of
employment. Such a framework would be useful for individuals across all areas along the
autism spectrum, and not solely at high functioning autistic points, as some research
tends to show favorability to the high functioning group.
The primary research questions for this study were:
1. What perceived barriers exist in acquiring support services for adults with an
Autism Spectrum Disorder in the area of employment?
2. What perceived barriers exist in acquiring support services for adults with an
Autism Spectrum Disorder in the area of health care?
3. Does the activation of social capital networks influence success rates of obtaining
support services in employment and health care?
These research questions were examined in the first four chapters of this study.
The first chapter identified the background of the problem as well as the purpose for the
study. The second chapter outlined a theoretical framework for analyzing the data
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 150
collected during the study in addition to outlining a review of the relevant literature.
Chapter three identified a methodology to collect and analyze the data. Chapter four of
this study presented the interview data collected, and this chapter of the study provides a
discussion of the collected data, recommendations, implications for practice, limitations
of the study, and suggestions for future research.
Summary of Findings by Research Question
Findings regarding Research Question One. The first research question asked
what perceived barriers exist in acquiring support services for adults with an Autism
Spectrum Disorder in the area of employment. Emergent themes in chapter four
highlighted some of the experiences adults with autism go through as they attempt obtain
employment, or employment-related support services. Each of the interview participants
experienced a core deficit of autism as a barrier to employment. Eddie, who would be
classified as being highly functioning, had a core deficit due to his sensory issues that
make work environments difficult to manage. AH, a high functioning college professor,
experienced a core deficit in his need for routine and systematic living, and this limited
the employment industries available to him. Several of the participants in the study
lacked any sort of exposure to job training experiences in high school. These participants
included OG2, Sofia, HT2, and Eddie. Where many individuals on the spectrum require
social stories and prompting to prepare them for upcoming expectations in a situation
(Moyes, 2001), work experiences could ease some of the anxiety of landing a job and
being successful once employed. In addition to lacking authentic work experiences in
high school, participants in this study also indicated they often were lacking exposure to
the “soft skills” like interviewing, portfolio creation, and resume writing in high school.
All participants in the study who are now adults with ASD lacked any such experience in
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 151
high school, according to their responses. Cimera and Cowan (2009) found school-aged
children with autism need services and life-skills that will help prepare them for
transition into the workforce and/or securing post-secondary educational opportunities.
This finding is supported by data presented in this study.
As defined by Scheer (2003), a structural barrier is a lack of an organizational or
structural mechanism which provides access to a needed resource. Therefore, a structural
barrier to employment for this population was the lack of available resources which could
be available in supporting these adults in their search for employment. Even when
support services were available, the job training experience Sofia had in community
college only prepared her for customer service at low-wage, low-skill jobs. If experiences
such as these are the only available programs for the population, then the likelihood of
these adults being unemployed or underemployed grows. Another participant in the
study, OG, identified prohibitive cost as a structural barrier to employment support
training. Once OG found a program which could have been useful in finding his son OG2
a job, he found out the cost was over $1000. This cost was prohibitive due to the family’s
income level, as could be likely for many other families in the current environment of
difficult economic times.
Another theme within the barriers to employment research question was the lack
of available employment resources for adults with ASD. This lack of resources is further
validated by the literature reviewed in this study. Levine, Marder, and Wagner (2004)
cited a lack of information about adult services, or the unavailability of services itself, as
the barriers encountered most often in efforts to obtain services for youth with
disabilities. Encountered almost hand-in-hand with this theme of unavailable resources
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 152
was the theme of difficulty obtaining information about autism or autism-related services.
At least two participants within the study, including OG and Eddie, indicated that they
were unsure where to go with respect to locating any information sources about services
for adults with autism. A final employment-related theme, which emerged during Eddie’s
interview, was “missed opportunities for institutional agents supporting employment”.
This theme was unique to Eddie and AH due to the fact they both received diagnoses of
autism later in life, so there were missed opportunities where institutional agents in their
respective high schools could have provided them more linkages to employment support
services, had they been identified when younger.
Findings regarding Research Question Two. The second research question
asked what perceived barriers exist in acquiring support services for adults with an
Autism Spectrum Disorder in the area of health care. Health care access barriers
provided the widest variance in emergent themes across all participants. Each
individual’s unique experience with their ASD demanded from the health care system an
equally unique experience with respect to their need for, and access to, health care.
Themes related to health care access can be divided into three major categories:
structural barriers, environmental barriers, and process barriers (Scheer, 2003;
Draininoni, et al., 2006). The themes are divided into these three categories for the
following discussion of their appearance within participant interviews.
Structural barriers refer to the structure of an individual’s insurance plan benefits,
or lack thereof, and relevant requirements which could hinder the ability to access
adequate health care (Scheer, 2003). Themes which were relevant to structural barriers to
health care access began with the lack of a framework or national health policy for adults
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 153
with ASD and their health care needs. As the Aday and Andersen (1974) framework
points out, “health policy is the starting point for consideration of the access concept”, so
it becomes a critical element in creating a context for how to serve the population, and
focus in on important issues that impact them.
Yet another structural theme observed in the course of this study was eligibility
criteria for state and government support which was an experience unique to Eddie in the
course of this study. He was the only person in this study to encounter different eligibility
criteria state-to-state from the same insurance provider, though the literature review
seemed to point to this theme as having a more immediate impact within the adults with
ASD community (Wehman, Smith, & Schall, 2009). However, its uniqueness in this
study could have more to do with the limited size of sample participants.
The fact that OG and OG2 had difficulty navigating their experience with low-
income insurance providers helped underscore the theme lack of knowledge and
experience in navigating the insurance system for low-income recipients. This was not a
theme represented in the literature review, but it bears relevance as a possibility for a
future avenue of research. OG, OG2, and Eddie also helped to identify a theme of
concerns for changes in eligibility criteria for autism diagnosis as defined by the DSM-V,
as the eligibility criteria changes for autism diagnosis could ultimately impact their ability
to access autism-related employment support services and health care if they are to no
longer be identified as having an ASD.
Although every participant’s experience with the health care system was unique,
two areas were consistent in their appearance in the study’s data: 1) needs for access to
physical health care, and 2) needs for access to mental health care. Physically, with the
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 154
exception of Eddie, every interview participant with ASD was at least slightly overweight
for their current height, and obesity-related issues could arise as a future medical concern.
As Dr. H. stated, “Eating will become his default stimulation if there is nothing else to
entertain him or keep his attention. And I just can’t imagine a day were this kid would
have to get a needle insulin daily…that would just be not a good thing for anybody…Ok,
so. He really is a big guy…” This statement could be relevant to almost any individual on
the spectrum who uses eating as their “default stimulation”, and the health-related costs,
physically and financially, of not managing this stimulation well could have serious
consequences for health and well-being. Sofia was the only participant who had a
regularly scheduled exercise routine every week, but even her father expressed concern at
the ease with which she is able to gain weight. With respect to the need for mental health
access, most participants with ASD for this study, including Sofia, Eddie, AH, and HT2,
stated they were either taking at least one medication to help stabilize their moods, or had
at least one experience with depression in their lifetime. This dependence on medication
as individuals with ASD get older ties into literature from Shimbakukuro, et al (2008)
who noted in their research that, as children with ASD age, prescription medications
become a larger share of total [medical] costs.
Environmental barriers refer to support service access that deals primarily with
either the physical outlay of buildings where services may be obtained, or the process of
reaching the location where services may be obtained, such as transportation, a lack of
ramps to enter/exit a building, or equipment accessibility (Scheer, 2003). The only
participants who were dependent upon public transportation in this study were OG and
OG2. Neither of these participants expressed any barriers to taking public transportation.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 155
However, using public transportation does imply that one would be dependent on the
promptness of the service. Lack of timeliness could cause an issue with getting to
appointments on time and possibly obstructing receipt of a desired service.
Process barriers are obstructions to support service access which inhibit service
delivery that have more to do with the service provider agent, or factors which deal with
an “untimely service delivery” (Scheer, 2003). One emergent process barrier theme was
awareness of changes in the Affordable Care Act of 2010 and how these changes could
impact health insurance coverage and availability. The changes the Affordable Health
Care Act will bring to the national health care system are significant, and, without
adequate knowledge of how these changes could impact their individual lives, adults with
ASD could miss out on opportunities to improve their physical or mental health. Because
the Health Care law and the relevant state health care exchanges will not be rolled out
fully until January, 2014, it is unclear how they could affect the lives of the study
participants, but provisions for individuals on the autism spectrum are written into the
law, so there is potential this law could affect the lives of many adults on the spectrum.
Other emergent themes within the data collected categorized as process barriers
included such topics as language barriers, and English as a non-native language which
was a barrier faced by Dr. H.’s parents as they immigrated from Vietnam to the United
States. Another process barrier, lack of quality service and provider options for care, was
faced by Dr. H., Eddie, and OG and OG2. Without the ability to choose from a cadre of
qualified providers, the ability to receive adequate medical attention diminishes, having
potentially significant effects on an individual’s quality of life.
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Another relevant health care access process barrier which emerged in participant
interviews included the prohibitive costs associated with access to health care. These
were each experienced by Sofia, OG2, and Eddie. Beatty, et al (2003) found income level
“consistently and substantially” linked to receiving needed care across services, except
primary care. Dr. H. revealed how he experienced a lack of adequately trained staff for
his brother, HT2, but, at least in terms of dental care, this lack of trained staff was
experienced by almost all participants, with the exception of Sofia, whose father reported
having access to an excellent dental staff for her. Researchers Pivens and Robbins (2011)
found a lack of existing models that meet the needs of caring for adults with ASD and
that the current workforce is not adequately trained to meet the unique complexities of
caring for individuals with ASD. Costs are, again, especially problematic for the near-
poor, as they may not qualify for government sponsored health access programs
(Drainoni et al., 2009). Indeed, Shattuck, et al (2012) point to a lack of attention with
respect to socio-economic status in ASD research.
The impact of one’s severity in their experience of autism was also found to be a
unique barrier to accessing health care. Because Dr. H’s brother, HT2, is severely
impaired by the nature of his autism. HT2 needs to access the health care system more
frequently and from more entry points into the system. In terms of mental health, HT2 is
heavily medicated, and prescription costs for multiple medications is likely expensive
without insurance, and HT2 depends upon his father in terms of access. This finding of
increased dependence on prescription medicine is underscored by work from researchers
Shimbakukuro et al. (2008), as they found that, as children with ASD age, prescription
medicine is an increasing share of overall medical concerns. As research has indicated,
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 157
individuals with ASD are more likely than other disability categories to have a number of
disabling medical conditions (Hwang et al., 2009; Kogan, et al., 2008; Mandel & Cao,
2006), resulting in a greater potential for service use.
Other unique process barriers were experienced by several individuals during the
course of the study. One unique process barrier underscored by AH was his experience
with the length of time undergoing pharmaceutical treatment. Because AH has been
taking anti-depressant medications since 1989, lacking insurance to pay for medications
could not only impose significant costs on him over long periods of time, but it could also
impose similar costs on individuals and families in situations where individuals with
ASD require long-term pharmaceutical treatment. In addition, the long-term dependence
on the treatment creates the possibility that individuals unable to bear these costs could
forego pharmaceutical treatment, with potentially serious consequences. As was
highlighted by AH’s interview, when he went off these particular meds for a length of
time, a “frozen and terrible” depression would ensue. This particular example highlights
the possibility that needing to forego one aspect of health care could require accessing
another, possibly more expensive, entry point to the health care system, such as mental
health services.
Yet another unique process barrier was experienced by Eddie in that his extensive
health records cause confusion, disruptions in service for consumers. Because the totality
of Eddie’s health records were over 300 pages, his doctors had difficulty perusing his
entire health history to find clues which may have helped them identify his chronic, yet
undiagnosed, GI issues. Extensive health records as a barrier to receiving health care is a
new and unique theme within the relevant literature base.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 158
Another unique process barrier to accessing future health care was participant
awareness of upcoming DSM-V changes and the impact of the Affordable Care Act of
2010. Changes in the DSM-V could mean the difference in OG2 being labeled as having
autism, and, therefore, whether or not he will qualify for state-funded Applied Behavior
Analysis therapies or whether the Affordable Care Act of 2010 will open greater
possibilities for insurance options for low-income families is yet to be seen. The arrival
of state and federally sponsored health exchanges in January 2014 will have an impact on
autism-related services and access to services, but, at least within this study, not many
consumers or families were aware of what services would be available, or how to
compare and secure services once they become available.
Findings regarding Research Question Three. Research Question Three asked
whether the activation of social capital networks influences success rates of obtaining
support services in employment and health care. Stanton-Salazar’s (2010) institutional
agent framework was used to place themes related to social capital into context during
analysis of this study’s data. General themes across participants were few, as each
individual’s experience with institutional agents was largely determined by his/her socio-
economic status. The general finding was that more social capital one had led to higher
socio-economic status and more access to institutional agents.
Unique themes that emerged from social capital themed data included the impact
of income affecting the ability to access social capital networks, which was experienced
by OG and OG2. According to Stanton-Salazar (2010), among lower-status members of
society, being able to access institutional support is typically an extraordinary
phenomenon. OG and OG2’s experience in not being able to capitalize on many
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 159
institutional agent relationships is demonstrative of Stanton-Salazar’s findings. As
Stanton-Salazar (1997) describes, “For members of subordinate groups to fully access
these funds of knowledge and to use them productively for instrumental purposes
requires no less than tapping into the cultural logic of the dominant group” (p. 13). It was,
therefore, unclear whether or not OG and OG2 knew how to manipulate their social
capital ties via tapping into the dominant group’s cultural logic.
Another unique theme was experienced by Eddie in his experience activating
institutional agents on behalf of individuals in search of an employment or health care
resource, which he did to find a health care resource to assist with his GI issues. Because
Eddie is a member of the dominant group, meaning Caucasian, it is possible he
understood more of the cultural logic necessary in order to access resources. However,
this finding is not correlative to Eddie being Caucasian. He could have, just as easily,
asked the right person to help him find a specific resource. Having social capital can
provide leverage to access resources was a unique theme to SC and SC2, whereby SC’s
local community and position in the community made access to dental resources more
available to his daughter through the presence of the local “town tutors”. Activity in
support groups and ethnic associations was yet another unique theme found with respect
to this research question in that Dr. H was able to leverage access to more resources
supporting individuals with disabilities through his mother’s affiliation in a community
group for South Asians with developmentally disabled children.
Limitations
Several limitations should be called attention. First, a larger sample of participants
would have been useful in an effort to generalize findings. Fortunately for this study,
generalization is not a widely-applicable tool in the world of autism, but it would have
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 160
been helpful to have a larger sample size in order to help triangulate results. Next,
unfortunately, the researcher was unable to recruit participants from a wide cross-section
of socio-economic backgrounds and was unable to recruit participants whose primary
language was not English. This would have provided a unique perspective shedding light
on whether or not, and to what degree, individuals without English as a primary language
experience barriers in employment and health care access. This is particularly relevant, as
Department of Developmental Services (DDS) data point to major spending inequalities
between Caucasian and Latino children with ASD, although the data did not specifically
indicate who were, and who were not, native English speakers among Latino families.
However, data from the DDS indicate that spending on Caucasian youth was $12,794 per
child last year, as opposed to $4,652 for Latino children (Zarembo, 2011, para. 38).
Another limitation of the study was only using Southern California as an area
from which to draw participants. As pointed out in the study, resources vary widely state-
to-state and community-to-community, so it would have been useful to be able to draw
from sample populations in different areas.
Recommendations for Practice
The recommendations outlined in this section are based on the data collected in
the form of interview responses from Chapter 4, observations made during the interviews
about gaps in service, as well as the researcher’s three-year background as a high school
educator of youth with ASD. Recommendations are categorized by research question.
The first employment recommendation is that not one, but several, transition
frameworks be created for support in exit strategies from high school to the adult world
of employment. These could be established for individuals along the autism spectrum,
and not solely for high functioning individuals. There seems to be a great deal of research
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 161
and intervention emphasis on individuals who are high functioning, but a great deal more
attention could be given to people who are not at a high level of functioning. Individuals
who are unable to communicate verbally and have poor social functioning skills need
options to creating quality of life improvements as well. Second, while individuals with
ASD are still in high school, a recommendation is to establish firm program
linkages/pipelines between schools and the local business community in order to provide
authentic work experiences for people on the autism spectrum. Because people on the
spectrum are, generally, visually-based learners and can often lack basic job skills when
they exit high school, it is imperative they have experiences in high school that expose
them to job-related skills, activities, and social interactions. It would likely be beneficial
to establish these linkages in fields that adapted well to autistic traits: detail oriented
tasks, ritual-based or checklist type tasks that can be followed precisely in a repeatable
manner, and tasks that do not involve great variance in social interaction.
Examples of these linkages would be companies like the Rising Tide Car Wash
and Detailing in Parkland, Florida, Roses for Autism in Guilford, Connecticut, software
engineering companies like the nonPareil Institute in Plano, Texas, or Semperical
software services in San Jose, California. Each of these businesses aligns the strengths of
autistic traits and behavior with employment demands; attention to detail, repeatable
tasks, and concentration on specific tasks for long periods of time. Doing data cleansing,
data and text migration, and data entry are all career-type jobs that offer more stability
and opportunity than many of the low-wage, low-skill jobs that many adults with autism
can find themselves stuck in.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 162
This last point leads to a third recommendation of trainings for employers on how
to recruit, engage, and work with individuals with autism. This way, any trepidation
employers may have to give people on the autism spectrum a job is potentially bypassed
because they will recognize the employment value of the population through training and
exposure to the population. In addition to gaining employees who are notoriously
punctual, have excellent attendance histories, and can work on projects for long periods
of time, there can be additional bonuses of federal tax incentives for hiring workers with
disabilities, such as the Work Opportunity Credit, the Disabled Access Credit, or tax
credits that extend to employers hiring long-term unemployed individuals, as those on the
autism spectrum often are.
Again, with respect to the secondary school experience, even though many
schools have transition coordinators whose job it is to identify and secure employment
experiences, the unique challenges and limited support availability individuals with ASD
face in the employment arena can hinder employment success. Therefore, a
recommendation is to have transition specialists in high schools who specialize solely in
transition for youth with autism. A recommendation is made for education programs
within schools to make sensory issues a priority when trying to orient individuals on the
spectrum to employment opportunities. Although getting a job is generally viewed as the
most important step to individuals not on the spectrum, often people without autism, such
as employers, can overlook the skills and abilities necessary to keep a job. Sensory issues
such as loud noises, sensitivity to light or smells within an office environment can be
debilitating to certain individuals on the spectrum. Therefore, it is key that individuals on
the spectrum seeking employment not only be aware of what their sensory issues are, but
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 163
also have a repertoire of strategies on how to manipulate their environment so as to
minimize the sensory overstimulation. The individual may also need direct instruction on
how to let employers know what his/her sensory issues are, so they can find ways
together to make the employee, and thus the business, more successful.
A recommendation is also made to have more experiences in high schools which
give exposure to, and experience in, the “soft skills” necessary for employment success.
Skills such as interview practice, portfolio creation, and resume building are all
experiences which many individuals on the spectrum need assistance in to ensure gainful
employment. If possible, having a mentor on the job, or a job coach with whom adults on
the spectrum could speak with to discuss job responsibilities and expectations, co-worker
relations, and benefits packages would be valuable resources for people of the spectrum.
Workers would also likely require training in how to go about requesting on-the-job
accommodations, such as written directions for specific tasks. Thus, having a mentor
could be very useful in developing such skills.
With respect to health care, it is recommended that a framework for a national
health care access policy, with equity access standards in mind, be developed for this
population of adults in our country. A new health care framework should address access
to health care at two levels, as indicated by the data in this study: access to physical
health care, and access to mental health care. The CDC indicates that autism affect
roughly 1% of our nation’s 305,000,000 population (CDC, 2010). This translates to
roughly 305,000 people. Additionally, Shattuck, Roux, et al. (2012) find that, each year
in the United States, 48,500 teens with an ASD reach their eighteenth birthday. The need
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 164
for a national policy to address these numbers, which show no sign of abating, is great
and citizens of our nation could benefit widely from it.
Due to the highly specific nature of needs for the population, the difficulty in
communication issues, and the limited availability of personnel who serve this
population, a recommendation is made to create large-scale campaigns nationwide to
engage in preventative health care measures aimed at the target population of families of
a person with an ASD. In primary care settings, people with disabilities often do not have
the same opportunities to take advantage of preventative and health maintenance
activities (Sutton & DeJong, 1998). Research has linked these missed opportunities to
health care providers’ overlooking preventative health care measures because they are
prone to focusing primarily on conditions associated with the disability (Sutton &
DeJong, 1998; DeJong & Palsbo, 2002) indicating a lack of knowledge or experience in
working with patients with disabilities. For example, because there is such a gap in dental
providers who can meet the needs of this population, teaching youth with ASD how to
use items such as water picks, creating routines of flossing and brushing could be
instrumental in lowering costs for acute dental care when problems arise in later years.
Also, teaching how to establish, and maintain, healthy eating and cooking habits could
affect and reduce obesity and obesity-related issues, which can be very costly in health
care expenses. Also underscoring the need for preventative service use, Drainoni et al
(2006) found that people with disabilities tend to underutilize basic preventative services
and can frequently use high-cost services such as emergency room visits, due, in part, to
unmet medical needs.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 165
Data from this study also indicate an acute shortage of professionals who are
qualified to treat adult autism-related issues. The industry segment suffers from a high
turnover rate and no federal or state standards of care for these individuals. More
individuals should be recruited, trained, and paid a livable wage to educate and care for
people who deal with this disorder every day. There should be a much larger educational
campaign to educate adults on the spectrum, and their families, on how the Affordable
Care Act will go into effect in their state, and what these changes will mean in terms of
health care access for these individuals. On the whole, there is a significant gap in
services which attend to the needs of this population, and the potential for social-
entrepreneurial success is there for those who are willing to provide the much needed
skills and services to address their needs.
Recommendations for Research
With respect to research that could be conducted to help serve this population of
adults in our nation, several themes emerge as possibilities. One most pressing area is a
detailed investigation into the health care costs associated with autism-related disorders.
To date, only one study is known which has attempted to quantify costs related to autism
over a lifetime (Ganz, 2007), but no study is known which seeks to specifically identify
health care costs associated with autism. The Ganz (2007) research points to costs related
to autism going beyond $35 billion dollars annually. Leslie and Martin (2007) state that
“a thorough understanding of the costs associated with treating these patients is necessary
to design necessary insurance programs and thereby reduce the potentially catastrophic
financial burden on families of individuals with ASDs” (p. 351). Therefore,
understanding the specific costs is a vital element in being able to develop policy tools.
For example, the interview with AH pointed to a lifetime need for pharmaceutical
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 166
treatment, without which he faces serious bouts of depression. Studies indicate a greater
need for medications as individuals with autism advance in age (Dejong, Palsbo, et al,
2002) which could possibly create financial hardship if insurance coverage is unavailable.
However, as a research focus, perhaps as an alternate to dependency on pharmaceutical
treatments, one suggestion is longitudinal studies which focus on two issues: the impact
of sustained exercise regimens over time and interventions which address social isolation
as a means of limiting the need for SSRIs and mental health access for depression related
issues.
Another research topic related to the area of policy is the impact of the Affordable
Care Act on access to health care for individuals with ASDs. As has been noted within
the media, several states have expressed their disdain for the law and will not seek to
implement key features of it. However, without various features of the law in place in all
fifty states, families could be limited in their ability to access needed services in their
home states, and migrations of families based on access to care could occur. Thus,
political haggling and disdain for aspects of the federal law could hinder access to
physical and mental health care for those with ASD. The impact of this law is a research
area that leads to sweeping implications of practice within the health care system.
It was also noticed during the collection of data that most of the older adults on
the spectrum were physically overweight. If individuals on the spectrum are consistently
underemployed or unemployed, are isolated socially, and likely living at home, it seems
as if there not much left besides eating as a “default stimulation”, as indicated by Dr. H in
his interview. Obesity-related health issues are not only avoidable, but they are also
costly. Ganz (2007) points to costs related to autism at being more than $35 billion
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 167
annually for individuals, families, and tax payers in the United States. Research on the
possible need to increase physical activity within the population, and how increased
physical activity could lead to more positive mental health outcomes is a line of research
that could be promising as well.
Because individuals with autism are, generally, a visually-oriented population
with a noted aptitude for video games, potentially useful research should focus on
“gamification” intervention strategies to address high-need areas, such as health-related
issues, employment support skills such as interviewing, social skill building, and bullying
as potential areas of development. Gamification can be defined as “the adoption of game
technology and game design methods outside of the games industry” (Detering, Sicart,
Nacke, O’ Hara, & Dixon, 2011), with possibilities existing for use in social behaviors
and support techniques. As Detering, Sicart, Nacke, O’ Hara, and Dixon (2011) point out,
“In persuasive technology, video games and game aspects have been studied as potential
means to shape user behavior in directions intended by the system designer, or instill
embedded values” (p. 2). Creating virtual environments that are safe, repeatable, and able
to be nuanced for level of difficulty could be incredibly useful tools for adults on the
spectrum as a way to instill values related to preventative health care habits and
employment support.
Research into ethnic and culturally related issues could also be rich in information
for the scientific community. It was noted in the study that no interviews were gathered
which addressed issues relating to populations of non-English speaking families living in
this country. This branch of research could be valuable in addressing family concepts of
autism in different cultural communities and could reveal a wider range of resources
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 168
available to families. This happened in the case of Dr. H., and his mother’s affiliation
with a South Asian support group for parents of developmentally challenged children,
which, ultimately, could reveal differences in health care outcomes based on linguistic
challenges when communicating with health care workers. The possibilities in terms of
research are rich, multi-faceted, challenging, and needed, in the adult autism community.
Conclusion
Conducting this study was an opportunity to take an “inside” look at how issues
related to employment and health care barriers affect the lives of adults with autism and
their families. Though research and attention has grown steadily in recent years on
interventions geared towards children and youth, this same fever of research funding and
attention has yet to reach the adult with ASD population. Providing educators, related
service providers, and researchers with an enhanced understanding of the issues that face
this population will be useful in developing research tools and intervention supports
which could improve their quality of life.
The purpose of this study was to look at the perceived barriers to employment
supports and health care access for adults with ASD while determining whether social
capital networks make any sort of difference in the availability of service options related
to these areas. The experiences collected through this study’s interviews demonstrate that
adult individuals with ASD face a wide array of barriers to employment support and
health care access and that individuals from lower socio-economic status endure more
access barriers to employment and health care support. Some of these barriers are
structural and based on deficits in framework approaches for transition out of high school
and into employment, a lack of health care policy, and a lack in available options for
services and quality care which address the needs of this unique population. However,
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 169
most of the barriers lie in the process area, which have more to do with experiences that
are endured while attempting to gain access to service. The interview portion of this
study provided enhanced awareness of six themes related to employment support, twelve
major themes related to health care access, and six major themes related to institutional
agents and social capital networks.
The information collected in this study could prove useful in the development of
frameworks for transitioning out of high school, national policy interventions for access
to health care, and research opportunities for intervention tools focused on adults with
autism at all levels of the spectrum, not just the high functioning areas. The information
collected in this study may lead to contributions to the field of autism research and policy
development, and these contributions may improve the quality of life for those
individuals and families whom these issues touch every day.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 170
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Appendix A
Interview Protocol for Individuals with ASD

Research Question #1
1. What barriers exist in acquiring support services for adults with an Autism
Spectrum Disorder in the area of employment?
Interview Questions
A. Are you currently employed? Where do you work? How many hours do you currently
work each week? How much are you paid? How would you describe your adjustment to
the job and your social relations with co-workers?

B. How long did you look for a job before you were able to get one?

C. Did you have any job training in high school? Any experiences where you were able
to go to a job training center, or have an actual job while you were in high school?

D. What skills/attributes do you feel you have that would be considered assets to a
business or company? In what way(s) do you feel these skills/attributes are overlooked in
your search for employment?

E. In your IEP in high school, did you have any employment related goals in your
transition plan? What were they? Do you feel like those goals helped prepare you to find
employment? Why or why not?

F. Do you have any sort of communication or sensory issues which make getting or
keeping a job difficult?

G. Have you ever been released from a job for any reason? How long did you work at
that particular job? Could you talk about why you were released?

H. Have you ever heard of a Vocational Rehabilitation counselor? Did you have/use a
vocational rehabilitation counselor to get your job? How do you get your
information/stay informed about employment or employment support services?

I. Do you have any ritual interests or behaviors that you do on a regular basis? Could you
describe them?

J. Have you tried to get employment services from any federal government agencies?
State or local community agencies? Have you experienced different eligibility criteria at
different agencies when attempting to receive employment services? If you have
experienced different criteria at different offices, can you describe what some of these
differences in eligibility may have been?

SUPPORT ACCESS BARRIERS ADULTS WITH ASD 180
Research Question #2
2. What barriers exist in acquiring support services for adults with an
Autism Spectrum Disorder in the area of health care?
Interview Questions
A. How would you describe your health currently and are there any illnesses, ailments, or
areas of pain that give you cause for concern with your current health? Do you have any
concerns about your health in the future?

B. Through what agency, employer, or insurance provider, if any, do you currently
receive access to health care, i.e. Medicare, Medicaid, Blue Cross HMO, Kaiser
Permanente HMO, a free clinic, etc?

C. Do you currently have a health-related issue which you are aware of by way of pain or
discomfort, but which you are not receiving treatment for?

D. When you have a doctor’s appointment, what mode of transportation do you use? Do
you need to make any sort of special arrangements with a para-transit agency, or a parent
or friend to go with you? If so, who goes with you and is it usually this same person who
goes with you to the doctor?

E. When you have attempted to get health care from a specialist, what has been your
experience when attempting to get a referral to see this specialist? Could you describe
your experience? Do you currently, or have you in the past, experienced a health related
concern for which you were unable to receive care?

F. Have you experienced a limitation within your current insurance coverage which has
prohibited you from receiving a particular service or piece of equipment you feel is
necessary to maintain your health or prevent future deterioration of health?

G. Are you aware of the changes to the eligibility criteria for autism in the DSM-V, the
book of medical criteria which defines the criteria for having a diagnosis of autism? Do
you have any concerns that these new eligibility criteria will affect any of the services or
supports you may currently receive or have in the past?

H. Are you currently taking any sort of medications associated with your autism? Would
you mind sharing what medications are currently being prescribed? How long have you
been taking this current medication?

I. What has been your experience with qualifying for services at different agencies?

J. Do you know approximately how much money you have paid out-of-pocket in order to
receive necessary health care within the past 12 months? What would you say the
experience has been like for you, financially, with regard to health related issues? Does
the potential cost of having to go to the doctor ever keep you from visiting a doctor?

SUPPORT ACCESS BARRIERS ADULTS WITH ASD 181

Research Question #3
3. Does the activation of social capital networks influence success rates of obtaining
support services in employment and health care?
Interview Questions
A. Could you describe the highest level of education you attained? Your occupation?
Ethnicity? Age? Gender? Do you own your home or rent?

B. Are you a member, or associated in any way, with any organization that promotes,
assists with, or advocates for autism related issues? Which organization(s)?

C. Have you ever asked anyone that you know to help you get a particular service or
support, like a job or where to go see a doctor? Why did you ask this particular person?
What was their profession and what did they try to help you with?

D. Have you ever met anyone through an organization that promotes, assists with, or
advocates for autism related issues that has helped you obtain a service or support you
may have needed? Could you tell me what this person’s occupation was?

E. Where do you receive your information about autism or autism-related support
services?

F. How many people live in your household with you? Would you describe the income in
this household as more than, less than, or equal to $23,000 (or an equivalent poverty level
for how many people live in the home)? http://aspe.hhs.gov/poverty/12poverty.shtml

SUPPORT ACCESS BARRIERS ADULTS WITH ASD 182
Appendix B
Interview Protocol for Caretakers of Adults with ASD

Research Question #1
1. What barriers exist in acquiring support services for adults with an Autism
Spectrum Disorder in the area of employment?
Interview Questions
A. Is your son/daughter currently employed? Where do they work? How many hours do
they currently work each week? How much are they paid? Do you have any concerns
about their adjustment to the job and social relations with co-workers?

B. How long did they look for a job before they were able to get one? In what ways did
you assist them in the job search?

C. Did your son/daughter have any job training in high school? Any experiences where
they were able to go to a job training center, or have an actual job while in high school?

D. In their IEP in high school, did your son/daughter have any employment related goals
in their transition plan? What were they? Do you feel like those goals helped prepare
them to find employment? Why or why not?

E. What skills/attributes do you feel your son/daughter has that would be considered
assets to a business or company? In what way(s) do you feel these skills/attributes are
overlooked in their search for employment?

F. Has your son/daughter ever been released from a job for any reason? How long did
they work at that particular job? Could you talk about why they were released?

G. Have you ever heard of a Vocational Rehabilitation counselor? Did you have/use a
vocational rehabilitation counselor to help your son/daughter get their job? How do you
get your information/stay informed about employment or employment support services?

H. Would you say your son/daughter has any social behaviors, ritual interests or
behaviors, that make getting or keeping a job difficult? Any communication or sensory
issues which could make getting or keeping a job difficult?

I. Have you tried to get employment services from any federal government agencies?
State or local community agencies? Have you experienced different eligibility criteria at
different agencies when attempting to receive employment services? If you have
experienced different criteria at different offices, can you describe what some of these
differences in eligibility may have been?

SUPPORT ACCESS BARRIERS ADULTS WITH ASD 183

Research Question #2
2. What barriers exist in acquiring support services for adults with an
Autism Spectrum Disorder in the area of health care?
Interview Questions
A. How would you describe your son/daughter’s health currently and are there any
illnesses, ailments, or areas of pain that give you cause for concern with their current
health? Do you have any concerns about their health in the future?

B. Through what agency, employer, or insurance provider, if any, does your son/daughter
currently receive access to health care, e.g. Medicare, Medicaid, Blue Cross HMO,
Kaiser Permanente HMO, a free clinic, etc?

C. Do your son/daughter currently have a health-related issue of which you are aware by
way of pain or discomfort, but which they are not receiving medical treatment for?

D. When your son/daughter has a doctor’s appointment, what mode of transportation do
you use? Do you need to make any sort of special arrangements with a para-transit
agency? If you do use a para-transit agency, who goes with them and is it usually this
same person who goes with them to the doctor?

E. When you have attempted to get health care from a specialist for your son/daughter,
what has been your experience when attempting to get this referral? Does your
son/daughter currently, or have they in the past, experienced a health related concern for
which they were unable to receive care? Why so?

F. Have you experienced a limitation within your current insurance coverage which has
prohibited your son/daughter from receiving a particular service or piece of equipment
you feel is necessary to maintain your health or prevent future deterioration of health?

G. Are you aware of the changes to the eligibility criteria for autism in the DSM-V, the
book of medical criteria which defines the criteria for having a diagnosis of autism? Do
you have any concerns that these new eligibility criteria will affect any of the services or
supports your son/daughter may currently receive or have in the past? In what way(s) do
you expect the Affordable Health care Act (Obamacare) to influence your son/daughter’s
health care access?

H. Is your son/daughter currently taking any sort of medications associated with their
autism? Would you mind sharing what medications are currently being prescribed? How
long have they been taking this current medication?

I. Have you experienced different eligibility criteria at different agencies at the federal,
state, or local community levels? Could you discuss what some of these different
eligibility criteria may have been?

SUPPORT ACCESS BARRIERS ADULTS WITH ASD 184

2. What perceived barriers exist in acquiring support services for adults with an
Autism Spectrum Disorder in the area of health care?

J. Do you know approximately how much money you have paid out-of-pocket in order to
receive necessary health care within the past 12 months? What would you say the
experience has been like for you, financially, with regard to your son/daughter’s health
related issues? Does the potential cost of them having to go to the doctor ever keep you
from having them visit a doctor?

Research Question #3
3. Does the activation of social capital networks influence success rates of obtaining
support services in employment and health care?
Interview Questions
A. Could you describe the highest level of education you attained? Your occupation?
Ethnicity? Age? Gender? Do you own your home or rent?

B. Are you a members, or associated in any way, with any organization that promotes,
assists with, or advocates for autism related issues? Which organization(s)?

C. Have you ever asked anyone that you know to help you get a particular service or
support, like a job or where to go see a doctor? Why did you ask this particular person?
What was their profession and what did they try to help you with?

D. Have you ever met anyone through an organization that promotes, assists with, or
advocates for autism related issues that has helped you obtain a service or support you
may have needed? Could you tell me what this person’s occupation was?

E. Where do you receive your information about autism or autism-related support
services?

F. How many people live in your household with you? Would you describe the income in
this household as more than, less than, or equal to $23,000 (or an equivalent poverty level
for how many people live in the home)? http://aspe.hhs.gov/poverty/12poverty.shtml

SUPPORT ACCESS BARRIERS ADULTS WITH ASD 185
Appendix C
Research Question Matrix

Research
Questions
Interview
Question
Research
Question
Connection
to Literature
Theories Emerging A
Priori Themes
Hypotheses
What perceived
barriers exist in
acquiring
support services
for adults with
an Autism
Spectrum
Disorder in the
area of
employment?

Is your
son/daughter
currently
employed? Where
do they work?
How many hours
do they currently
work each week?
How much are
they paid? Do you
have any concerns
about their
adjustment to the
job and social
relations with co-
workers? If no, go
to question 2.

2. How long did
they look for a job
before they were
able to get one? In
what ways did you
assist them in the
job search?

1. Patton
(2002). Ease
into
questioning

2. Hendricks
& Wehman
(2009). The
unique social
impairments
of autism can
cause
difficulty in
the search
for
employment.

1. Social capital

2. Social capital
1. Higher
degrees of
social capital
will lead to
higher success
rates of
acquiring
support services

2. Job searches
are long (+1
yr.) and jobs
are
underpaid/not
typically suited
to strengths of
individual

SUPPORT ACCESS BARRIERS ADULTS WITH ASD 186

Research
Questions
Interview
Question
Research
Question
Connection
to Literature
Theories Emerging A
Priori Themes
Hypotheses
What barriers
exist in
acquiring
support services
for adults with
an Autism
Spectrum
Disorder in the
area of
employment?

3. Did your
son/daughter have
any job training in
high school? Any
experiences where
they were able to
go to a job
training center, or
have an actual job
while in high
school?

4. In their IEP in
high school, did
your son/daughter
have any
employment
related goals in
their transition
plan? What were
they? Do you feel
like those goals
helped prepare
them to find
employment?
Why or why not?

3. Cameto,
Levine, &
Marder
(2004)
54.8% of
students with
ASD
identified as
having a
need for
vocational
training,
placement,
or support
p.39

4. Shattuck,
et. al (2012).
Rates of
employment
and
educational
activities
lower for
Hispanics,
African-
Americans,
and people
from lower
income
households

3. Social capital

4. Social capital
3. Job training
was minimal,
using only
basic/menial
skills. Job was
not based on
student
strengths or
abilities.

4. Hispanics
and African-
Americans will
have
comparable
rates of
employment
with Whites,
those from
poorer
households will
not have
comparable
rates with those
from wealthier
households
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 187

Research
Questions
Interview
Question
Research
Question
Connection
to Literature
Theories Emerging A
Priori Themes
Hypotheses
What barriers
exist in
acquiring
support services
for adults with
an Autism
Spectrum
Disorder in the
area of
employment?

5. Has your
son/daughter ever
been released
from a job for any
reason? How long
did they work at
that particular
job? Could you
talk about why
they were
released?

6. Have you ever
heard of a
Vocational
Rehabilitation
counselor? Did
you have/use a
vocational
rehabilitation
counselor to help
your son/daughter
get their job?
How do you get
your
information/stay
informed about
employment or
employment
support services?

5. Lawer, et.
al (2008).
Uneven
cognitive
and social
abilities…
create
problems
with
employment
stability.

6. Cameto,
Levine, and
Wagner
(2004). Only
14% of
school staff
have active
participation
of VR
counselor

5. Social capital

6. Social capital

5. ASD core
deficits in
social
functioning will
hinder one’s
ability to get
and/or keep
employment.

6. Most
families will be
unaware of VR
counselor or the
linkage to
resources they
could make
families aware
of.

SUPPORT ACCESS BARRIERS ADULTS WITH ASD 188

Research
Questions
Interview
Question
Research
Question
Connection
to Literature
Theories Emerging A
Priori Themes
Hypotheses
What barriers
exist in
acquiring
support services
for adults with
an Autism
Spectrum
Disorder in the
area of
employment?

7. Would you say
your son/daughter
has any social
behaviors, ritual
interests or
behaviors, that
make getting or
keeping a job
difficult? Any
communication or
sensory issues
which could make
getting or keeping
a job difficult?

8. Have you tried
to get employment
services from any
federal
government
agencies? State or
local community
agencies? What
has your
experience been
with eligibility
criteria at different
agencies when
attempting to
receive
employment
services? If you
have experienced
different criteria at
different offices,
can you describe
what some of
these differences
in eligibility may
have been?
7. Shattuck
et. al (2012).
Lack of
employment
participation
after high
school leads
to poorer
behavioral
outcomes

8. Wehman,
Smith, &
Schall,
(2009).
“These
programs
offer an
array of
services…
they operate
under
different
federal, state,
and local
laws”
(p. 141).
7. Social capital

8. Social capital

7. Ritual
interests/
perseverating
behaviors will
lead to
difficulty in
maintaining
employment

8. Families will
have
experienced
different
eligibility
criteria at
different
federal, state,
and local
agencies.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 189

Research
Questions
Interview
Question
Research
Question
Connection
to Literature
Theories Emerging A Priori
Themes
Hypotheses
What barriers
exist in
acquiring
support
services for
adults with an
Autism
Spectrum
Disorder in
the area of
health care?
1. How would
you describe
your health
currently and are
there any
illnesses,
ailments, or
areas of pain that
give you cause
for concern with
your current
health? Do you
have any
concerns about
your health in
the future?

2. Through what
agency,
employer, or
insurance
provider, if any,
do you currently
receive access to
health care, i.e.
Medicare,
Medicaid, Blue
Cross HMO,
Kaiser
Permanente
HMO, a free
clinic, etc?

1. Kogan, et.
al (2008)
found it may
be possible,
because of
unmet needs
of services,
that families
experience a
higher rate
of out-of-
pocket
expenses.

2. Fouts,
Andersen, &
Haglund,
(2000)
If people
with
disabilities
receive
inadequate
health care,
this could
lead to poor
health
outcomes,
not
excluding
secondary
conditions.
1. Aday &
Andersen
(1974). Health
care
framework;
Characteristics
of population at
risk

2. Aday &
Andersen
(1974). Health
care framework
Characteristics
of health
delivery system

1. Health
characteristics will
be varied for all
consumers, but
interviewees will
have lingering
issues from
childhood
ailments.

2. Lower income
families/consumer
will have Medicaid
coverage, middle
income will have
Medicaid, and high
income
families/consumers
will have employer
provided
insurance.

SUPPORT ACCESS BARRIERS ADULTS WITH ASD 190

Research
Questions
Interview
Question
Research
Question
Connection
to Literature
Theories Emerging A
Priori Themes
Hypotheses
What barriers
exist in
acquiring
support
services for
adults with an
Autism
Spectrum
Disorder in the
area of health
care?
3. When you have
a doctor’s
appointment, what
mode of
transportation do
you use? Do you
need to make any
sort of special
arrangements with
a para-transit
agency, or a
parent or friend to
go with you?

4. When you have
attempted to get
health care from a
specialist, what
has been your
experience when
attempting to get a
referral to see this
specialist? Could
you describe your
experience? Do
you currently, or
have you in the
past, experienced
a health related
concern for which
you were unable
to receive care?

3. DeJong &
Palsbo
(2002).
Accessible
transportation
can be a
problem for
individuals
with mobility
impairments
because it
can require a
need for
rescheduling
appointments
& delaying
care.

4. Beatty, et.
al, (2003). A
major reason
for why
access to
specialists
can be
important for
adults with
disabilities is
because poor
access to
specialty care
has been
linked to
development
of secondary
conditions
3. Aday &
Andersen
(1974).
Utilization of
health services;
Consumer
satisfaction

4. Aday &
Andersen
(1974).
Characteristics
of health
delivery
system;
Consumer
satisfaction
3. A
parent/caretaker
will take them
to the doctor.
Para-transit
users will be
frustrated with
inconsistency
of service.

4. Difficulties
will arise when
consumers
attempt to
receive
specialist
referrals.
Consumers will
have had to
forego care as a
result of not
receiving
needed
referrals.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 191

Research
Questions
Interview
Question
Research
Question
Connection
to Literature
Theories Emerging A
Priori Themes
Hypotheses
What barriers
exist in
acquiring
support services
for adults with
an Autism
Spectrum
Disorder in the
area of health
care?
5. Have you
experienced a
limitation within
your current
insurance
coverage which
has prohibited you
from receiving a
particular service
or piece of
equipment you
feel is necessary
to maintain your
health or prevent
future
deterioration of
health?

6. Are you aware
of the changes to
the eligibility
criteria for autism
in the DSM-V, the
book of medical
criteria which
defines the criteria
for having a
diagnosis of
autism? Do you
have any concerns
that these new
eligibility criteria
will affect any of
the services or
supports you may
currently receive
or have in the
past?
5. DeJong &
Palsbo
(2002). Need
for specific
services not
always well
understood
by those who
authorize
them,
individuals
with
disabilities
can have
difficulty
getting the
service they
need.

6. Huerta, et.
al (2012).
Little is
known about
the [sic] new
criteria and
there is
concern
within the
community
that those not
identified
under new
criteria, may
lose their
diagnosis, or
could lose
necessary
services.

5. Aday &
Andersen
(1974).
Characteristics
of health
delivery
system;
Characteristics
of population at
risk.

6. Aday &
Andersen
(1974).
Characteristics
of population at
risk; Health
policy

5. Several
individuals will
have
experienced
insurance
limitation
barriers which
prohibit
receiving a
needed service
or piece of
equipment.

6. Most people
will be aware
that changes are
coming, but
will be unsure
when they will
take effect.
Consumers will
be concerned if
they will still be
eligible for
services under
new criteria.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 192

Research
Questions
Interview
Question
Research
Question
Connection
to Literature
Theories Emerging A
Priori Themes
Hypotheses
What barriers
exist in
acquiring
support
services for
adults with an
Autism
Spectrum
Disorder in the
area of health
care?
7. Do you know
approximately
how much money
you have paid out-
of-pocket in order
to receive
necessary health
care within the
past 12 months?
What would you
say the experience
has been like for
you, financially,
with regard to
health related
issues? Does the
potential cost of
having to go to
the doctor ever
keep you from
visiting a doctor?

8. What has been
your experience
with qualifying
for services at
different
agencies?

7. Drainoni
et. al (2006).
Financial
barriers to
health-care
access occur
when
insurance
coverage
restrictions
put certain
services out
of reach,
especially for
lower-income
consumers
with
disabilities

8. Beatty, et.
al (2008).
Complexity
of referral
process in
Managed
Care
Organizations
(MCOs)…
could present
barriers to
people with
disabilities as
they seek
access to
specialty
care.
7. Aday &
Andersen
(1974). Health
policy;
Consumer
satisfaction;
Utilization of
health services.

8. Aday &
Andersen
(1974). Health
policy.
Characteristics
of health
delivery
system;
Utilization of
health services.

7. Costs play
into health care
decisions more
often than they
should for
consumers.
There will have
been at least 2
times in the last
year consumers
will have
encountered a
cost-prohibitive
service.

8. Consumers
will have had
experiences of
different
eligibility
criteria for the
same service at
different
agencies. This
will frustrate
consumers and
dampen their
efforts to try
and obtain
services.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 193

Research
Questions
Interview
Question
Research
Question
Connection
to Literature
Theories Emerging A
Priori Themes
Hypotheses
Does the
activation of
social capital
networks
influence
success rates of
obtaining
support services
in employment
and health
care?
1. Could you
describe the
highest level of
education you
attained? Your
occupation?
Ethnicity? Age?
Gender? Do you
own your home or
rent?

2. Are you a
members, or
associated in any
way, with any
organization that
promotes, assists
with, or advocates
for autism related
issues? Which
organization(s)?

1. Zarembo,
(2011) para.
8. Public
spending on
autistic
children
varies based
on
racial/ethnic
and socio-
economic
status.

2. Stanton-
Salazar

Social capital.

2. Social capital
1. Racial/ethnic
and socio-
economic
variations will
account for
different levels
of support
service
acquisition

2. Individuals
from higher
socio-economic
backgrounds
will be more
likely to join
advocacy
organizations.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 194

Research
Questions
Interview
Question
Research
Question
Connection
to Literature
Theories Emerging A
Priori Themes
Hypotheses
Does the
activation of
social capital
networks
influence
success rates of
obtaining
support services
in employment
and health
care?
3. Have you ever
asked anyone that
you know to help
you get a
particular service
or support, like a
job or where to go
see a doctor? Why
did you ask this
particular person?
What was their
profession and
what did they try
to help you with?

4. Have you ever
asked anyone that
you know to help
you get a
particular service
or support, like a
job or where to go
see a doctor? Why
did you ask this
particular person?
What was their
profession and
what did they try
to help you with?

3. Stanton-
Salazar

4. Stanton-
Salazar
3. Social capital

4. Social capital
3. Individuals
from lower
socio-economic
statuses are less
likely ask
institutional
agents to act on
their behalf.

4. A majority of
individuals, and
caretakers, will
have asked
others to help
with support
services on
their behalf.
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 195

Research
Questions
Interview
Question
Research
Question
Connection
to Literature
Theories Emerging A
Priori Themes
Hypotheses
Does the
activation of
social capital
networks
influence
success rates of
obtaining
support services
in employment
and health
care?
5. Where do you
receive your
information about
autism or autism-
related support
services?

6. How many
people live in your
household with
you? Would you
describe the
income in this
household as more
than, less than, or
equal to $23,000?
5. Levine,
Marder and
Wagner
(2004).
40.4% of
parents a
child with
autism
surveyed
indicated
that a lack of
information
is a barrier to
acquiring a
needed
service.

6. Zembra
(2011).
Varying
socio-
economic
backgrounds
acquire
different
levels of
service.
5. Social capital

6. Social capital
5. A majority of
individuals and
families will
receive their
information
primarily from
friends and
family, not
support
agencies.

6. Lower
income families
will have more
family
members than
higher income
families.

SUPPORT ACCESS BARRIERS ADULTS WITH ASD 196
Appendix D
Photograph, Audio & Video Release Form

I hereby grant permission to the rights of my image, likeness and sound of my voice as
recorded on audio or video tape without payment or any other consideration. I
understand that my image may be edited, copied, exhibited, published or distributed and
waive the right to inspect or approve the finished product wherein my likeness appears.
Additionally, I waive any right to royalties or other compensation arising or related to the
use of my image or recording. I also understand that this material may be used in diverse
educational settings within an unrestricted geographic area.

Photographic, audio or video recordings may be used for the following purposes:
• conference presentations
• educational presentations or courses
• informational presentations
• on-line educational courses
• educational videos

By signing this release I understand this permission signifies that photographic or video
recordings of me may be electronically displayed via the Internet or in the public
educational setting.

I will be consulted about the use of the photographs or video recording for any purpose
other than those listed above.

There is no time limit on the validity of this release nor is there any geographic limitation
on where these materials may be distributed.

This release applies to photographic, audio or video recordings collected as part of the
sessions listed on this document only.

By signing this form I acknowledge that I have completely read and fully understand the
above release and agree to be bound thereby. I hereby release any and all claims against
any person or organization utilizing this material for educational purposes.

Full Name___________________________________________________

Street Address/P.O. Box________________________________________

City ________________________________________________________

Prov/Postal Code/Zip Code______________________________________

Phone ___________________________ Fax _______________________

SUPPORT ACCESS BARRIERS ADULTS WITH ASD 197
Email Address________________________________________________

Signature____________________________ Date____________________________

If this release is obtained from a presenter under the age of 19, then the signature of that
presenter’s parent or legal guardian is also required.

Parent’s Signature_____________________ Date____________________________

SUPPORT ACCESS BARRIERS ADULTS WITH ASD 198
Appendix E
Audio/Video Recording Consent Form

If your study includes audio or video recording, please note that participants must consent
to: Participate in the research.

CONSENT TO AUDIO- OR VIDEO RECORDING & TRANSCRIPTION

Barriers to Accessing Support Services in Employment and Health Care for Adults
with Autism Spectrum Disorders: A Case Study

Ardail Rashad Henry, University of Southern California

This study involves the audio or video recording of your interview with the researcher.
Neither your name nor any other identifying information will be associated with the
audio or audio recording or the transcript. Only the research team will be able to listen
(view) to the recordings.

The tapes will be transcribed by the researcher and erased once the transcriptions are
checked for accuracy. Transcripts of your interview may be reproduced in whole or in
part for use in presentations or written products that result from this study. Neither your
name nor any other identifying information (such as your voice or picture) will be used in
presentations or in written products resulting from the study.
By signing this form, I am allowing the researcher to audio or video tape me as part of
this research. I also understand that this consent for recording is effective until the
following date: _________________. On or before that date, the tapes will be destroyed.

Participant's Signature:
___________________________________________Date:___________
SUPPORT ACCESS BARRIERS ADULTS WITH ASD 199
Appendix F
Informed Consent for Non-Medical Research
University of Southern California
Rossier School of Education

Identification of Investigators & Purpose of Study
You are being asked to participate in a research study conducted by Ardail Henry from the
University of Southern California. Your participation is voluntary. You should read the
information below, and ask questions about anything you do not understand, before deciding
whether to participate. Please take as much time as you need to read the consent form. You may
also decide to discuss participation with your family or friends. If you decide to participate, you
will be asked to sign this form. You will be given a copy of this form.

The purpose of this study is to gain information about obtaining support services in employment
and health care for adults with an autism spectrum disorder. This study will contribute to the
researcher's completion of his doctoral dissertation. You have been chosen to participate in the
study as you may be an adult with a form of autism, or may be a primary caretaker/authorized
conservator of an adult with autism.

Research Procedures
Should you decide to participate in this research study, you will be asked to sign this consent
form once all your questions have been answered to your satisfaction. This study consists of an
interview that will be administered to individual participants in a location of your choosing, or at
a USC campus library. You will be asked to provide answers to a series of questions related to
obtaining support services for adults with autism. With your consent, these interviews will be
video and audio recorded for reference and destroyed after 3 years.

Time Required
Participation in this study will require up to about 90 minutes of your time.

Compensation for Participation
When the interview has concluded, you will be provided with a $20 gift card

Risks
There are no anticipated risks. The investigator does not perceive more than minimal risks from
your involvement in this study. A risk is defined as the possibility of injury or loss. Minimal risk
is defined as discomfort or harm not being greater than what one would typically encounter in
everyday life. For the purposes of this study, minimal risk would be defined as the likelihood of
being asked questions about your current health, and possibly being offended by it.

Benefits
There are likely no direct benefits to any participants. Potential indirect benefits from
participation in this study include highlighting unmet needs in the adult autism support service
community, highlighting areas of great concern for employment support, contributing to the
evidence-base which could be used to develop equitable access policy in health care for adults
with autism.

SUPPORT ACCESS BARRIERS ADULTS WITH ASD 200
Confidentiality
Any identifiable information obtained in connection with this study will remain confidential and
will be disclosed only with your permission or as required by law.

Only the members of the research team and the University of Southern California's Human
Subjects Protection Program (HSPP) may access the data. The HSPP reviews and monitors
research studies to protect the rights and welfare of research subjects.

The results of this research will be presented at a USC dissertation defense, including clips of the
video recorded interviews. The results of this project will be coded in such a way that the
respondent's identity will not be attached to the final form of this study. All video recorded clips
will be pixilated to hide the identity of the participants. If you do not wish to be video/audio
recorded, you may refuse to do so at any time. The researcher retains the right to use and publish
non-identifiable data. Iindividual responses are confidential, aggregate data will be presented as
generalizations about the responses as a whole. All data will be stored in a secure location
accessible only to the researcher. Upon completion of the study, all information that matches up
individual respondents with their answers including video recordings will be destroyed.

Participation & Withdrawal
Your participation is entirely voluntary. You are free to choose not to participate. Should you
choose to participate, you can withdraw at any time without consequences of any kind.

Questions about the Study
If you have questions or concerns during the time of your participation in this study, or after its
completion or you would like to receive a copy of the final aggregate results of this study, please
contact:

Researcher's Name: Ardail Henry Advisor's Name: Dr. Patricia Tobey
323-632-8304 213-740-0776
dalehenry21@gmail.com tobey@usc.edu

Questions about Your Rights as a Research Subject—IRB Contact Information
University Park Institutional Review Board (UPIRB)
3720 South Flower Street
Credit Union Building (CUB) Third Floor 310, MC 0702
Los Angeles, CA 90089-0702
Phone: (213) 821-5272
Fax: (213) 821-5276
E-mail: upirb@usc.edu

Giving of Consent
I have read this consent form and I understand what is being requested of me as a participant in
this study. I freely consent to participate. I have been given satisfactory answers to my
questions. The investigator provided me with a copy of this form. I certify that I am at least 18
years of age.

SUPPORT ACCESS BARRIERS ADULTS WITH ASD 201
I give consent to be (video/audio) taped during my interview. ________ (initials)

____________________________________ ____________________________________
Name of Participant (Printed) Name of Legally Authorized Rep (if applicable)

____________________________________ ______________
Signature of Participant or Legally Authorized Representative Date

I have explained the research to the participant and answered all of his/her questions. I believe
that he/she understands the information described in this document and freely consents to
participate.

_____________________________________
Name of Researcher (Printed)

_____________________________________ ______________
Signature of Researcher Date

Date of Preparation: 3/18/2013
USC UPIRB #UP-13-00082

Abstract (if available)

Abstract Background: There is little available empirical study on adults with autism spectrum disorders (ASDs) as a research group. Although some research exists on interventions for employment and employment supports, much less empirical study has been conducted on health care related issues in the adult autism community. Purpose: The purpose of this study was to identify perceived barriers to employment supports and health care access for adults with autism and to determine if the activation of social capital networks has any influence on successfully accessing these resources. Method: Seven qualitative interviews were conducted for the study. Five interviews were conducted with adults with ASDs. Two interviews were with family members who were conservators of an adult with ASD. Results: With respect to employment, adults with ASD lack 1) frameworks for transitioning out of high school and into the employment world of adulthood, 2) exposure to job experiences in high school, beyond low-wage paying skills and 3) training in ""soft skills"" like interviewing and portfolio building. With regard to health care, a lack of national policy with equity of access standards exists for the adults with ASD community and limited options for service providers also persist. Conclusion: Research should be conducted to determine specific health care costs associated with autism in order to develop relevant national policy frameworks. Additionally, more employment support services should be created and made available to the adult population of people with ASDs. With regard to social capital networks, higher socio-economic status creates more access points to health care and employment support services at the local community level but has more limited success at the state and federal levels.

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Asset Metadata

Creator Henry, Ardail Rashad (author)

Core Title Barriers to accessing support services in employment and health care for adults with autism spectrum disorders: a qualitative study

School Rossier School of Education

Degree Doctor of Education

Degree Program Education (Leadership)

Publication Date 09/11/2013

Defense Date 08/30/2013

Publisher University of Southern California (original), University of Southern California. Libraries (digital)

Tag access,adults,autism,autism spectrum disorders,Barriers,employment,health care,OAI-PMH Harvest,social capital

Format application/pdf (imt)

Language English

Contributor Electronically uploaded by the author (provenance)

Advisor Tobey, Patricia Elaine (committee chair), Green, Alan Gilford (committee member), Pack, Emilio (committee member)

Creator Email dalehenry21@gmail.com

Permanent Link (DOI) https://doi.org/10.25549/usctheses-c3-327493

Unique identifier UC11293522

Identifier etd-HenryArdai-2032.pdf (filename),usctheses-c3-327493 (legacy record id)

Legacy Identifier etd-HenryArdai-2032.pdf

Dmrecord 327493

Document Type Dissertation

Format application/pdf (imt)

Rights Henry, Ardail Rashad

Type texts

Source University of Southern California (contributing entity), University of Southern California Dissertations and Theses (collection)

Access Conditions The author retains rights to his/her dissertation, thesis or other graduate work according to U.S. copyright law. Electronic access is being provided by the USC Libraries in agreement with the a...

Repository Name University of Southern California Digital Library

Repository Location USC Digital Library, University of Southern California, University Park Campus MC 2810, 3434 South Grand Avenue, 2nd Floor, Los Angeles, California 90089-2810, USA