University of Southern California Dissertations and Theses

Of barriers and breach: a narrative phenomenology of autism, community, and occupation

(USC Thesis Other)

Of barriers and breach: a narrative phenomenology of autism, community, and occupation

PDF

Download a page range

Download transcript

Copy asset link

Request this asset

Transcript (if available)

Content Of Barriers and Breach
A Narrative Phenomenology of Autism, Community, and Occupation
by
David Turnbull
A Dissertation Presented to the
FACULTY OF THE USC GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
DOCTOR OF PHILOSOPHY
OCCUPATIONAL SCIENCE
December 2021
Copyright 2021 David Turnbull
ii

Acknowledgements
This project would not have been possible without the time, energy, and effort of each of
the individuals who were willing to share their experiences with me for the project. I can never
thank them enough or begin to express what their trust and openness has meant to me over the
past several years.
I am also extremely grateful to have spent the past seven years working alongside and
under the mentorship of my dissertation advisor Dr. Mary Lawlor. Thank you for creating the
space where this was possible and for seeing something in me years ago that I hadn't seen in
myself.
I very much appreciate the assistance and patience of the members of my dissertation
committee: Dr. Erna Blanche, Dr. Cheryl Mattingly, Dr. Beth Pyatak, and Dr. John Sideris. Their
support in the process of adapting my plans for the pandemic was invaluable, and their
constructive advice has been an immense help in the final stages of work on this dissertation.
I’d like to acknowledge the contribution of the members of the Boundary Crossings
research lab led by Dr. Lawlor. I’ve had the privilege of working with incredible faculty
members and students over my time in the lab, and many of the ideas and themes presented in
this dissertation would not be what they are without our discussions and their efforts on the
research projects conducted in the lab.
Finally, I need to thank Beth V. I know this wasn’t what you had in mind years ago when
I came up with the idea of going back to school, but you’ve been my biggest support through it
all. I couldn’t have done it without you and I wouldn’t have tried without you by my side.

iii

Abstract
This dissertation explores the experience of autistic young adults and their families. The
priorities of autistic people have been largely ignored by researchers and clinicians who serve
this population. The data presented here has been drawn from three separate but closely
related studies conducted between 2016 and 2021. One project, initially developed for this
dissertation, sought autistic adults to share their experiences related to community-based
occupations. The other two projects (Adult Collective Narrative and Autism in the Community),
sought to enhance understanding of the experience of autistic adolescents and young adults
and their families through interviews with a broad range of family, practitioners, and community
members of autistic young adults. Participants in all groups reported persistent difficulties and
institutional barriers to accessing meaningful services and safe community spaces. A mismatch
in priorities between autistic people and the funders of service systems was identified as a
primary concern for autistic adults and their family members. Participants fears related to
violence at the hands of police are described. Historical analysis of trends in service provision,
advocacy, and public policy highlight the systemic nature of the issues that contribute to distress
and poor outcomes for autistic people.

iv

Preface: A Note on Language
During my occupational therapy education, I was taught that person-first language (e.g.,
man with autism) was the “right way” to refer to autism. As I became more familiar with the
writings of self-advocates on the spectrum and immersed myself in neurodiverse online spaces, I
recognized that the majority of autistic individuals used and stated a preference for identity-first
(eg, autistic woman) language. For this reason, I will be using identity-first language when
referring to autistic people.
Prominent autistic scholar and writer Lydia Brown (2017), also known as Autistic Hoya,
has written extensively on this topic. I provide this extended quote to illustrate the common
argument for identity-first language from autistic individuals:
I am East Asian, in regards to race, and Chinese (Han, specifically), if you go by
ethnicity. I am U.S. American if you go by nationality. I am a person of ambiguous faith
and Christian upbringing by religion, and radical leftist of some otherwise undefined
fashion, if you go by politics. I am genderqueer and non-binary. I am Autistic
None of these cultural descriptors are inherently good -- nor are any of them inherently
bad…
These are not qualities or conditions that I have. They are part of who I am. Being
Autistic does not subtract from my value, worth, and dignity as a person. Being Autistic
does not diminish the other aspects of my identity. Being Autistic is not giving up on
myself or limiting myself or surrendering to some debilitating monster or putting myself
down. Being Autistic is like being anything else. (para. 2-6)
Additionally, it is the convention of many Autistic writers who treat Autism and Autistic as
proper adjectives, one of many disability identity groups to follow the example of the Deaf
community. Common practice distinguishes between “Big D” Deaf which refers to culture and
identity, and “Small d” deaf which refers to “the general deaf population or the audiological
condition of being deaf” (Holcomb, 2012, p. 10). Broadly in the Deaf community, and
increasingly in academic publications the word “D/deaf” is replacing deaf or Deaf as the go-to
noun or adjective (Skelton & Valentine, 2003). I will follow the convention of Autistic writers,
to use the capital A when referring to culture and identity.
v

A final note concerns concepts related to neurodiversity. I will define three key terms
here, with more detailed discussion of the neurodiversity paradigm in the text ahead.
Neurodiversity: Natural variation in neurology resulting in differing ways of learning and being
in the world and a social paradigm stating “differences are to be recognized and respected as any
other human variation” (National Symposium on Neurodiversity, 2012, para. 1).
Neurodivergent (ND): An adjective or noun that relates to an individual’s ways of learning and
being in the world that are atypical within a culture. The 2011 National Symposium on
Neurodiversity at Syracuse University listed the following diagnoses as neurodivergent in
modern Western culture, “Dyspraxia, Dyslexia, Attention Deficit Hyperactivity Disorder,
Dyscalculia, Autistic Spectrum, Tourette Syndrome, and others” (2012, para. 1). Nick Walker
(2014), an autistic academic and author, defines ND as ”having a mind that functions in ways
which diverge significantly from the dominant societal standards of ‘normal’” (para. 23).
Neurotypical (NT): An adjective or noun. Neurologically based way of learning and being that
is present in the majority of a culture, or “neurocognitive functioning that falls within the
dominant societal standards of ‘normal’” (Walker, 2014, para. 23). Inherent in the use of NT is
recognition that “normal” ways of being and experiencing the world are culturally idealized and
prioritized.

vi

Table of Contents

Acknowledgements ........................................................................................................................ ii
Abstract ......................................................................................................................................... iii
Preface: A Note on Language ...................................................................................................... iv
Chapter 1: Introduction ................................................................................................................. 1
Background ....................................................................................................................... 6
Methodological Background .............................................................................................. 8
Chapter 2: Conceptual Framework ............................................................................................. 15
Autism ............................................................................................................................. 22
Theoretical Influences ..................................................................................................... 26
Community and Belonging .............................................................................................. 30
Hermeneutic Phenomenology ......................................................................................... 34
Pragmatic Theory of Truth .............................................................................................. 36
Chapter 3: Methods and Procedures .......................................................................................... 41
Contribution to Occupational Science ............................................................................. 41
Methodology ................................................................................................................... 42
Research Questions ....................................................................................................... 44
Sources of Data .............................................................................................................. 44
Participants ..................................................................................................................... 51
Limitations of the Study ................................................................................................... 54
Presentation of Findings ................................................................................................. 55
Enhancing Rigor ............................................................................................................. 56
Recruitment and Participant Selection ............................................................................ 59
Procedures ...................................................................................................................... 61
Organization of Findings ................................................................................................. 65
Prelude: The Culture Of Autism .................................................................................................. 66
What is Autism? .............................................................................................................. 67
Chapter 4: Miracles and Millionaires ........................................................................................... 79
Playing the Lotto ............................................................................................................. 86
Discussion ....................................................................................................................... 88
Interlude: The Culture of Philanthropy ........................................................................................ 91
Chapter 5: No Fun in Funding .................................................................................................. 105
Finding Loopholes ......................................................................................................... 107
“If It's Recreational It's Not Therapeutic” ....................................................................... 110
Leisure .......................................................................................................................... 111
Discussion ..................................................................................................................... 114
Chapter 6: Safe Spaces ............................................................................................................ 118
Structural and Systemic Issues in Policing ................................................................... 122
Discussion ..................................................................................................................... 138
Chapter 7: Lives in Breach ....................................................................................................... 140
Finding a Place to Belong ............................................................................................. 145
Lessons for Practice ..................................................................................................... 161
Discussion ..................................................................................................................... 162
vii

Chapter 8: Conclusion .............................................................................................................. 165
Implications for Occupational Science and Therapy ..................................................... 169
Implications and Future Research ................................................................................ 170
Discussion ..................................................................................................................... 171
References ............................................................................................................................... 174

1

Chapter 1: Introduction
There are moments in each of our experiences that we recognize as shaping the person
we have become. It might be a person we met who offered a new perspective or a place we
visited that began a lifelong interest. Often these moments are unexpected or new and must be
integrated into our existing knowledge and beliefs. For Brian
1
, a participant in my dissertation
study, one of these moments occurred when he was 13 years old. He told the story during an
interview:
On July 22, 2004, I was watching the Animal Planet channel on channel #76. I pressed a
button on the remote control with the initial intention of simply lowering the volume. I
accidentally changed the channel to channel #75, which was the "Turner Classic Movies"
channel on Charter Cable. I saw a black-and-white scene from the 1931 film version
of Frankenstein because the director's birthday, James Whale, was on 22 July 1889. As a
birthday celebration, Turner Classic Movies had a James Whale movie marathon, and I
fell in love with cinema when I heard Henry Frankenstein exclaim, "It's alive! It's alive!"
after bringing the monster to life….Starting on July 22, 2004, I fell in love with classic
cinema, and then I became a cinephile for life.
The mistaken button push may, at first glance, seem insignificant and unimportant. For Brain, as
is made clear by his telling of the story, this moment was a turning point, a breach of the
predictable that would shape his life and offer a new frame for understanding his world and
himself.
Brian struggled in high school. He could do the work but didn’t yet have the
accommodations that would come after receiving a diagnosis of Autism Spectrum Disorder at 20
years old. He had qualified for special education in the 1st grade, receiving resource services
until age 13. It was “the worst four years of my life. I was not popular, knew a lot of mean
people, and suffered in classes in which the teachers had unrealistic expectations.”

1
Participants have been assigned pseudonyms and certain non-critical details of their stories have been
altered to ensure privacy.

2

“I considered myself strange and weird because that was what some of my schoolmates
had labeled me. One time, even a bus driver on an elementary school bus asked me, ‘What's
wrong with you?!’” Brian didn’t know what was “wrong with” him. He’d been to doctors and
psychiatrists and had a series of diagnoses, he recalled speculation that “depression, bipolar
disorder, and even schizophrenia” could be the cause. It wouldn’t be until mental health
symptoms caused Brian to withdraw from college that he would receive a diagnosis of autism.
It’s not uncommon for individuals identified as neurodivergent in adulthood to have been
previously diagnosed with one or more psychiatric disorders (Lai & Baron-Cohen, 2015; Lai &
Szatmari, 2020; Nylander & Gilberg, 2001; Spencer, Lyketsos, Samstad, Dokey, Rostov, &
Chisolm, 2011; Zener, 2019).
Finding the right label can provide an explanation for characteristics and behaviors that
were previously a source of confusion, shame, and stigma. Brian said, “Now that I am an adult,
and aware of my autistic traits, I currently see myself as ‘different,’ but not ‘monstrous.’ In fact,
I might be different from other people, but I am who I am, and I accept myself and love myself
for who I am!” I asked Brian what helped him get to that place of acceptance and love. He
replied:
There have been times in which I hated myself for not being like my peers. Since I am
more aware about my personal identity, I try to think of myself as "different," but in a
good way. In particular, songs from the Frozen franchise have taught me to "let it go,"
"show myself," and most importantly, "be myself"!”
Film has also provided Brian an avenue to build connections to a wider community and
provide a bridge of understanding to his own strengths and abilities. At an autism awareness
event 2 years after receiving a diagnosis, Brian met another young man with an interest in film.
The two bonded and soon became “film buddies.” Brian describes the blooming of their
friendship, “Oliver and I are both film lovers, and were both born during the Disney Renaissance

3

of the 1990s. I was born when the animated version of Beauty and the Beast was released in
1991. Oliver was born the same year as the release of The Lion King.” Today, “Oliver is my one
and only friend, and I am incredibly grateful for him.”
Brian is a writer. He was a member of the editorial staff of a literary journal as a college
student, has had several of his poems published, and is a regular contributor to a film review
website. When he began presenting his writing publicly, Brian was nervous. “I remember feeling
somewhat embarrassed by my awkward uses of language.” As his self-understanding increased,
his anxieties became less of a barrier:
I had to realize that sometimes people have autism because they were "born that way"
(kind of like the Lady Gaga song "Born This Way"). Now that I am older, I consider my
autism as an unusual blessing because there is a chance that I might be an autistic savant
since I possess unusually high intelligence in writing (in a way similar to Dustin
Hoffman's Oscar-winning performance in the "Best Picture" winner Rain Man). It is
even possible to say that I am such a great writer because I am autistic!
Brian preferred to answer questions in writing and the parenthetical remarks in the above
quote are his. They seem to serve a similar purpose to the citations in academic writing, to
provide the background for a claim that may defy simple explanation and a way of showing your
work or providing someone else with a shortcut to understand your reasoning. The reference to
Rain Man, a 1988 Barry Levinson film about an autistic man with incredible memory abilities
and talents, serves as a buffer to potential doubts over Brian’s talent as he navigates the world as
an autistic writer.
Brian turned regularly to Rain Man in his answers. The film provided a common point of
reference for autism, a prosthetic device to explain what autism is without a need for explaining.
The film tells the story of an autistic man with incredible intelligence and charm. A person who
despite challenges and misunderstanding was caring, funny, and not someone who should be

4

feared or pitied. In my last conversation with Brian, I asked him what everyday people need to
know about autism.
Brian answered, “Autism is a real condition, and not just a plot element in the film Rain
Man, starring Dustin Hoffman.”
The statement didn’t register for me right away as particularly noteworthy. I agreed with
the sentiment in Brian’s statement that seemed to recognize gaps in our collective understanding
of autism. In fact, it was concern about these gaps that had drawn me to undertake the project in
which Brian was a participant. When the interviews were complete, I compiled and read all of
our conversations in order. On the last page of the document I came across this answer again. In
the context of his life story, the words represent something more than a simple condemnation of
a society that lacks knowledge of autism. In that moment, to me, Brian’s words point to a larger,
more fundamental problem faced by neurodivergent adults.
The purpose of drama, according to the eponymous protagonist in Shakespeare’s
(1599/2012) Hamlet, is ”to hold, as ’twere, the mirror up to nature” (p. 137). Hamlet is preparing
actors for a play. He demands performances in alignment with nature. The absence of a true
reflection, “cannot but make the judicious grieve” (p. 137). While Rain Man is not explicitly
based on a true story, the filmmakers went through great efforts to reflect nature. They worked
with parent advocates and researchers Bernard Rimland and Ruth Sullivan and autistic adults
including Kim Peek and Joe Sullivan to create nuanced and realistic characterization of a then
relatively unknown diagnosis (Donvan & Zucker, 2016).
Brian’s experience, which will be expanded on in upcoming chapters, has proven that far
too many in our culture today do not recognize the strengths or capabilities of neurodivergent
individuals. Brian uses Rain Man to show the outside world that an autistic person can be

5

intelligent, talented, and deserving of compassion. He holds the mirror up to outside
misperceptions because it is one that neurotypical culture understands and has embraced, even
though he does not recognize the reflection as his own. The film is an excellent and respectful
portrayal of autism in 1988, but autism today is not what autism was in 1988. The diagnostic
criteria have been revised and revised again (Matson & Kozlowsk, 2011; Verhoeff, 2013),
awareness campaigns and expanded services have made the diagnosis more common (Bennett,
Webster, Goodall, & Rowland, 2018; Graf, Miller, Epstein, & Rapin, 2017), and advances in
technology have significantly impacted many of the practical and logistical communication
challenges for autistic individuals (Singer, 2017).
As I read Brian’s answer, I thought about the cultural narratives that surround autism, the
stories we tell to explain what autism is and how we ought to treat individuals who have been
given the diagnosis. It was not a revelation to me that there was more to the story of autism than
what is found in any single discipline of science or humanities. However, it was shocking to
realize the inadequacy of these stories to reflect the experience of neurodivergent adults.
In this dissertation, I will share the lived experience of autistic adults and members of
their families to understand the impact of our shared narratives about autism. I have included
mothers’ experiences navigating service systems to access support across the lifespan, as well as
their concerns about a neurotypical culture that poses a risk to their children's health and safety.
Autistic adult participants shared stories related to their senses of belonging and identity that
offer a perspective on how our culture is living up to the ideals of equality and opportunity
espoused in the framework of liberal democracies the world over (Azerrad, 2016; Wilson, 2019).
For those, like myself, whose interest in autism is related to research or services, the lived
experience of autistic adults can show us if the end result of our work aligns with our motives in

6

doing that work. To explore the culturally constructed nature of the narratives that guide our
actions and attitudes towards neurodivergence, I will provide analysis of historical trends and
cultural beliefs that created the reality of autism as we know it today.
Background
This is not the dissertation that I set out to write. I was planning to complete a more
traditional ethnography of a community in transition: young autistic adults. In March 2020, when
Covid-19 public health measures went into effect, I was in the process of recruiting participants.
My plan was to spend the rest of 2020 hanging out with these participants, in their real worlds,
getting to know them and observing their interactions in the community. I was interested in
learning more about engagement in leisure occupations and how the things we do for fun can
inform identity, belonging, and well-being. Leisure occupations have been a very important
facilitator of community in my experience and were a protective factor I'd identified for my own
mental health and well-being. I’d recognized that leisure was not considered important by the
funders of autism services and research, and I wanted to begin to build a body of work that
would support the creation of evidence based services that are more in alignment with the stated
desires and priorities of neurodivergent adults.
Autism is and always has been a misunderstood condition. From the time it was named
nearly 80 years ago, people have not been able to explain the cause of autism or find a treatment
model that has improved outcomes for the population. One reason is the pervasive effects of the
condition. The diagnostic criteria (American Psychological Association [APA], 2013) are
simple: challenges in domains related to communication and restricted or repetitive behaviors or
interests (RRB). The presentation of ASD is anything but simple, with challenges and
differences in communication, RRB, motor coordination, sensory processing, memory,

7

expressive language, intellectual ability, mental health, food sensitivities, gut health, seizures,
and a host of other medical and social domains.
Early in my career, as I met more neurodivergent people through work and social life, I
began to recognize that the picture of autism I’d received through training and cultural
messaging was not reflective of reality. The people that I was working with and building
relationships with weren’t anything like what I’d been taught to expect. The impact on my
thinking was profound. I could relate to aspects of the experience and, as a result, I could not
ignore it. To me, the gap between what I’d been taught was true and the reality I was witnessing
demanded action. I expected that it was a simple matter of education. I went to work in a group
home a few months after earning a Bachelor’s Degree in journalism. The company offered two
weeks of training, but the bulk of the material was related to human resources procedures and
basic first aid. So, I assumed when I encountered this knowledge gap, that it was simply a matter
of a personal lack of education.
As I continued into a career in this field, I assumed the answers would be found in each
training I attended, then in an education in occupational therapy and the fieldwork opportunities I
would be exposed to. Research allowed me to share spaces with and learn from an array of
individuals with lived experience related to autism. I had the opportunity to sit with autistic teens
and adults and the privilege of being entrusted to share elements of their stories. I have met with
academics and experts, clinicians and policymakers, and the family members, friends, and loved
ones of autistic people. I learned early on that I was not alone in seeking these answers. Over the
course of this project, I have not met a single person with more good than bad things to say about
the treatment of autistic people by American society at-large. Nearly every participant could
identify individuals who were supportive and did the right thing but, in general, professional

8

systems of care seemed to be contributing to the marginalization, stigmatization, and
traumatization of neurodivergent people.
For me, the big question of autism has always been, how do we keep getting it so wrong?
My lack of knowledge when I took that first job was easy to explain away, but as I received more
education, more training, more exposure to real lives in real contexts, the scale of the trouble
came into focus. A mismatch in priorities, rather than a simple lack of knowledge, seemed to
present a barrier larger than what could be fixed by adding another workshop to my c.v. or
opening a clinic in one city. Leisure highlighted this mismatch for me.
So, while my methods were changed by pandemic precautions and this dissertation is not
exactly what I planned, it is the story I had always hoped to tell and seeks to answer the same
questions that have guided me for more than a decade. This is a story of barriers and breach,
moments that present challenges for participants and moments that required me as a researcher to
step back and reexamine my beliefs and motivations. I have always been deeply committed to
doing what I know is right. This gets me into trouble sometimes and has created many awkward
situations. In many areas of life I’ve learned to be more flexible, but I hold steadfast to one
principle that has become foundational in my narrative. The American poet and civil rights
activist Maya Angelou, is attributed with saying, “Do the best you can until you know better.
Then, when you know better, do better” (Angelou & Caged Bird Legacy, 2018). Over the course
of this project, I have come to know more than I did before. I’ve learned about autism, about
myself, and about the culture that surrounds us. I know better. This dissertation is a first step in
doing better.
Methodological Background
There is a tendency in medical and behavioral research to identify the “normal” range of
human experience and to problematize any experience that falls outside of the bounds of

9

“normal.” The experience of people who live on the outer edges of the bell curve are discounted
and medicalized. The voices of “experts” are prioritized and seen as more valid than the concerns
of an individual with lived-experience. For this dissertation, I am interested in the experiences of
autistic adults. I am interested in how they experience and make meaning from leisure and
community occupation. I will be using a collection of methods that emphasize the lived
experience of this population through narrative engagement. The narrative approach places value
on each individual’s story and a phenomenological framework allows for researchers to move
away from rigid categories designed to fit everyone and focus on the experience of an individual
or a population of interest.
We have painted certain knowledge of autism and neurotypicality with the patina of
objectivity. Modern medicine and modern science more generally have become very good at
developing and measuring constructs to classify and quantify what it is to be a person. Minute
processes are defined and given a name and they take on a new importance. The philosopher
Hans-Georg Gadamer (1975) criticized reductionist sciences and philosophies which hew too
closely to method over meaning. “The importance of method consists in the fact that by its own
definition it investigates only by elaborating questions which are accessible for mathematical
abstraction and measurement or its equivalents” (p. 310). In the realm of medicine, where our
neurotypical culture situates autism, a construct is deemed “real” when it can be reliably
measured. Credence is given to interventions that achieve measurable change, regardless of the
relevance of that change to the patient.
What the world knows about autism has shifted incredibly during the lifetimes of the
young adults whose narratives are shared here. My first job working with autistic people was in
2004, when the CDC estimated 1 in 125 American children to be autistic (Maenner, et al., 2020)

10

and the Lancet medical journal issued a partial retraction of a fraudulent study by Andrew
Wakefield linking autism to vaccines. Today, the prevalence is estimated at 1 in 54 children
(2020) and the academic conversations about etiology and ontology of autism have begun to
allow for the consideration of autism as part of the natural variation of human neurological
experience, rather than a puzzle to solve in order to cure or recover the otherwise typical children
“trapped” or “imprisoned” by autism.
Some look at the changes in prevalence and ask what is happening. Why are there so
many more autistic kids today than 5, 10, or 20 years ago? The growing numbers have bred
skepticism toward the diagnosis (Bennett, Webster, Goodall, & Rowland, 2018; Graf, Miller,
Epstein, & Rapin, 2017) and created tensions within the autism community that has been
conditioned to treat research and treatment funding as rare and limited in a way that pits interest
groups against one another (Benevides, et al., 2020a). These points of contention within and
around the autistic community create an impetus to continue to refine our definition of autism
and move closer to understanding the nature of the condition.
Throughout these changes in our collective understanding of autism and despite the best
efforts of countless professionals in academia, clinical practice, and the autistic community, the
reality of poor outcomes for autistic adults has not substantially improved. The anthropologist
Claude Levi-Strauss argues, “every civilization tends to overestimate the objective orientation of
its thought and this tendency is never absent” (1962, p. 3). He offers bricolage, an approach that
can be helpful in countering these tendencies. I will approach the discrepancy between the
magnitude of efforts to improve conditions for autistic individuals with the reality of abysmal
outcomes as a bricoleur.

11

The bricoleur is a French concept that does not have a direct English equivalent.
Described by authors as a jack of all trades (Gobbi, 2005), “a mythical putterer” (Herman, 1997),
or in Levi-Strauss’ (1962) words:
The 'bricoleur' is adept at performing a large number of diverse tasks; but, unlike the
engineer, he does not subordinate each of them to the availability of raw materials and
tools conceived and procured for the purpose of the project. His universe of instruments
is closed and the rules of his game are always to make do with 'whatever is at hand', that
is to say with a set of tools and materials which is always finite and is also heterogeneous
because what it contains bears no relation to the current project, or indeed to any
particular project, but is the contingent result of all the occasions there have been to
renew or enrich the stock or to maintain it with the remains of previous constructions or
destructions. (p. 17)
Bricolage, as a research technique, allows the researcher to choose the tools and modes of
inquiry that are appropriate to best answer a question, rather than relying only on those deemed
most relevant amongst contemporaries within a single discipline. The ability of a researcher to
select what is appropriate from a set of tools gathered through experience and analysis across
disciplines and use the available materials to arrive at new conclusions not possible within the
confines of a single framework. In Levi-Strauss’s conception, the disciplinary researcher
categorizes and defines and, in so doing, they create boundaries around observable traits, while
the bricoleur examines the leftovers and the fraying edges of prior categorization, looking for
new connections that enhance or upend our understanding of a given phenomenon or population.
Bricolage "also acts as a liberator by its protest against the idea that anything can be meaningless
with which science at first resigned itself to a compromise" (p. 22)
In our current cultural context, bricolage has a great potential to address the concerns
related to the nature of both occupation and autism. Occupational science exists as an
interdisciplinary branch of a post-disciplinary academy. Researchers interested in occupation use
a wide array of tools and methods to generate knowledge, offering no disciplinary shortcuts to

12

occupational therapists or scientists engaged in the practice of research. Joe Kincheloe (2011), a
critical theorist in education, argued that new and perhaps more beneficial conclusions arise
when we “are not chained to the same assumptions as individuals operating within a particular
discipline” (p. 686). The perseverance of poor outcomes in autism underscores the need for a
new perspective and for re-considering the truth of the narratives that guide research, services,
and acceptance.
There was not a clear path that I, as an occupational scientist, ought to take to more fully
understand the significant barriers to community occupations that were emerging as the crucial
theme in my data. Within the community of scholars interested in autism at my home
occupational science division there is immense variation. We have psychologists, occupational
therapists, anthropologists, epidemiologists, rehabilitation scientists, and neuroscientists working
on projects as diverse as ethnography to biomarkers to brain imaging to gut microbiome and
from theory to practice. This interdisciplinarity was a selling point for me, even if it remains a
thorn in the side of those who desire a clean and distinct boundary around occupational science.
As this particular project began in earnest, my goal was a narrative ethnography, two
methodological guideposts which brought me no closer to a single discipline. Narrative and
ethnographic inquiry strategies are used across disciplines in qualitative research. At each step, it
was necessary to examine the assumptions of each discipline I encountered. Reading of
ethnography in sociology underscored the requirement of analyzing the overwhelming influence
of power structures and society level imbalances. Anthropologists used ethnography to highlight
the power of the individual or community to overcome the social conditions and biological
programming that are seen by some as akin to predestination.

13

Bricolage felt appropriate to approach the subject of barriers to community-based
occupations. Not only because as a method of research it has been said “bricoleurs pick up the
pieces of what’s left and paste them together as best they can” (Kincheloe, 2011, p. 681). While
it did feel at times like trying to salvage a research endeavor gone awry, bricolage offered the
opportunity to do something meaningful with the stories I had been a part of collecting and
honoring the participants’ experience and willingness to share. By combining narratives found in
three sets of phenomenological data, a clearer picture of the scale and nature of the problem can
be constructed.
Kincheloe (2011) describes two common objections to bricolage as a research method.
First, it has been said that as a jack of all trades, the bricoleur is not an expert on any one topic
and, as a result, their analysis may be shallow or superficial. While that is a valid concern, it is
not one that is exclusive to bricolage. Any research endeavor can be superficial, discipline has
little bearing on the rigor a given researcher employs. I will endeavor in this dissertation to
“show my work,” and make clear that the tools (methods and disciplines) I’ve selected were not
hodge-podge or random and the materials (participant narratives or analysis of published
writings) are not incomplete or cobbled together.
The second criticism of bricolage comes from Kincheloe’s participation in faculty search
committees interviewing recent doctoral graduates and may be especially relevant to address
here. The task of the bricoleur is a daunting one, essentially taking disparate sources of
information and generating something new without the roadmap offered by a more strictly
disciplinary pursuit. Kincheloe (2011) grudgingly admits that his committee member colleagues
have a point when they say, “such a daunting task cannot be accomplished in the time span of a
doctoral program” (p. 681).

14

What this criticism would ignore in this case is that the gathering of tools used to craft
this dissertation did not begin the day I became a PhD student or with the submission of my
dissertation proposal. It began long before as I learned about narrative structures as a journalism
student or how to conduct an interview as a documentary filmmaker. I learned about autism from
the autistic people I worked with and their families. I attended community events and saw the
reality of services and opportunities for neurodivergent adults. I learned about behaviorism and
sensory integration as a one-on-one aide in schools and learned about the healing power of
community and occupation as I struggled to find my own place in the world. I learned to
understand statistics working on political campaigns and how they are abused working in
political talk radio. A master’s degree in occupational therapy came with opportunities to work
alongside and learn from experts across disciplines and fieldwork placements exposed me to new
sides of autism and autism intervention. A research assistantship allowed me the opportunity to
engage with the philosophy and practice of qualitative research for the two years leading into this
PhD program. This project may not be the same one that I intended, but it is not something I’m
settling for. It is not slapdash, and it has never been rushed. This is the culmination of nearly two
decades of professional and life experience and, at the same time, is only the beginning of my
work on this topic.

15

Chapter 2: Conceptual Framework
“So, I figured out how to explain executive dysfunction to neurotypical people. So, you know
how you can't bite your finger off even though it would only take about the same amount of
force as biting into a baby carrot because your brain stops you from doing that. That is what
executive dysfunction feels like except with starting a task. Like even if you really really want to
do it, you physically cannot because your brain is preventing you. But then added on to not being
able to bite your finger off, you also have this horrible sense of guilt for not being able to do that.
That is what executive dysfunction feels like. Even if we want to start the task, we are physically
unable to because our brain sees it as a dangerous threat and therefore will prevent us from doing
it.” -@uselessagendercosplay, TikTok, 2021

In the summer of 2018, I was taking the final required course of my PhD program, likely
the final required course of my academic career. The work was relatively straightforward, with
one project completed in stages over the course of the semester and graded at the end. I wasn’t
worried about completing the project but, as weekly check-ins made it evident I was behind the
pace of the class, the professor asked to meet. I explained that it’s just the way I’ve always been,
I need pressure and deadlines and just have a hard time getting started early. The next week as I
walked into the room, the professor greeted me and gave me a book he thought I should read. It
was a self-help for procrastinators, a trait that he reminded me could become problematic as my
studies became less structured as a PhD candidate.
I flipped through the book and saw the same strategies that I’d tried and failed with. It
wasn’t a revelation to me that my procrastination was a bad habit. I’d tried half the strategies in
the book before and nothing had worked. The more I tried, the more I failed, and the more sure I
was that nothing could work. On my drive home from class I thought about my past. I thought
about all the checklists, calendars, day-planners, palm-pilots, apps, and sticky notes that I’d used
throughout my life. When nothing worked, I started to feel like the problem was me, that I was
somehow just “broken.”

16

By the time I got home I was upset. When my partner Beth asked how my day was, I
reached into my bag and held up the book, “I got this gift in class.” I told the story and my
anxiety spiraled. None of this was a surprise to Beth, we’d lived together for years, and she knew
that procrastination was an issue for me and that I would not respond well to the gesture of
receiving a book that, to me, felt like criticism. The exact phrasing is gone from my memory but,
in the course of the discussion, she mentioned ADHD as one possible explanation for both the
procrastination and some of the anxiety.
I dismissed the idea. I wasn’t hyperactive, I didn’t have trouble in school, I wasn’t what I
thought ADHD was. Over the next few weeks, I started to read a little bit more about the
diagnosis. I read a few articles, watched a few YouTube videos, and I started reading the social
media feeds of ADHD self-advocates. I realized quickly that my understanding of ADHD was
extremely narrow, and that the image I had in my mind of a young boy bouncing off of the walls
was only one manifestation of the diagnosis.
It was one of these social media posts, a video in which a young woman shared her
experience of inattentive type ADHD, that changed my mind. I do not know exactly which video
it was, I sat and played through a dozen on their feed and I cried. She was describing me, she
was describing my experience. Specifically, she was describing the parts of my experience that I
had never been able to, the parts that I’d been trying and failing to explain for most of my life.
I was painfully shy as a small child. I remember trips to the grocery store before I was
old enough to start school when I would hide behind my parents at the checkout stand to avoid
interacting with the cashier. I was an emotional kid, my eyes shed tears easily and frequently,
often for reasons I couldn’t explain or even understand. I learned around that time that being

17

emotional wasn’t okay for boys and started to label my responses as abnormal. These are the
earliest memories of what 20 years later would be labeled as an anxiety disorder and depression.
It didn’t help matters that I was a heavy kid. In the 4th grade I moved to a new school and
for the first time was aware that I stood out. Comments about my appearance and whispered
jokes became a regular part of my life. I began to absorb media representations of “normal”
bodies and the judgements about the character of those of us whose bodies are something else. I
learned from countless interactions that my weight would be the first thing anyone would notice
about me and it would define who I am in others’ eyes. By the time I had reached the sixth grade,
I had internalized the stigma and learned to view my emotions as defective and untrustworthy
when they did not match those of my peers, real or idealized.
As I aged and the social demands of life became more complex, my anxiety intensified
and I continued to blame myself for being unable to “fix” myself. At times, anxiety and
depression have stood in the way of my occupational engagement. In my early twenties, I began
to avoid large social gatherings, worried about judgement and hoping to avoid uncomfortable
situations. Instead of finding solace in this self-imposed exile, the avoidance bred more anxiety
and self-blame turned into depression. Through it all, I just wanted to be “normal” and couldn’t
understand why nothing I tried seemed to help.
Despite living a life full of self-doubt, I rarely questioned my ability with a camera. A
camera gave me confidence and purpose, and it provided a shield. In my mind and in my
experience, people would notice the camera before me. This was a ticket to a larger world. The
camera became an icebreaker and allowed me to give myself permission to risk the vulnerability
of new social situations. I took a camera everywhere that I felt nervous to be, and used it to
remain on the periphery, engaging with the community in parallel rather than head-on. As I

18

gained skill and comfort, my world opened up. I met new people and attended events that I
would have avoided otherwise.
Over these years, film and video remained an occasional outlet and gateway to a
meaningful social life outside of work and home. My anxiety and depression ebbed and flowed
as did my capacity for self-compassion, but I began to feel pressure that what I was doing for
work was not “enough.” It didn’t pay well, I wasn’t using my skills or training, I was “capable of
more,” and felt crushed by expectations. In my story, the world shared my expectations and the
judgements that came with not living up to them. Then I had an opportunity to test that theory,
when my college friend made a feature film and wanted my help.
I spent the next several years working behind a camera or a sound board, producing
films, radio programming, and a television show. Doing the things that made me happy but in a
new way. I gained some confidence and got better at playing the part, but was still playing a part.
I still struggled to feel comfortable in my skin and in the world at large and to feel like I was ever
doing “enough” to succeed. I had notebooks full of ideas but had trouble translating those plans
into action. Creativity in my work gave way to capitalism and meaningful collaborative
occupations became exhausting transactions. I took what gigs I could but just couldn’t get my
own projects off the ground. I called it procrastination, a lack of motivation, being lazy, and
before settling on “broken.”
I could never explain to myself why I couldn’t “just do” the things I wanted to do like
everyone else seemed to. Each failed strategy reinforced the notion that it was my fault, some
sort of personal or moral failing. By the time the professor handed me the book on
procrastination, I’d given up fixing the problem. I had rewritten my narrative to explain the
perceived failures as a predictable result of my “brokenness.” It didn’t offer a solution or make

19

me feel great about myself, but the narrative did let me avoid the work of processing each
moment of feeling like an outsider or broken.
When I began to learn about ADHD and how executive dysfunction is experienced, I
recognized my brokenness. I sent a message to my partner that maybe she was on to something. I
wrote, “apparently this is all common in folks with ADHD. It's weird thinking that this might not
all be my fault. I felt a bit foolish at that moment, it seemed obvious to me now that this label fit,
like I’d spent my life missing the forest for the trees. I hoped this new information would
overwrite the narrative that I was broken, and it is, but it’s a slow process. It’s been about two
years since I sent that message. In that time, I’ve done a lot of work to better understand myself,
incorporating this new piece of my identity where I can.
I’m learning more every day, and finding the words to describe the things that have
always been a mystery. Concepts that I vaguely understood came into new focus and reading and
listening to the experiences of adults with ADHD gave me the language to describe facets of my
experience. Discovering a new term would often lead me down a rabbit hole of online research. I
would read journal articles and browse through the scholarly books available at the university
library. Finding that my “brokenness” had a name that science had accepted allowed me to begin
accepting that these things were not a flaw in my character.
As I learned more and more about ADHD, I began to rely less and less on academic and
medical sources. I appreciated having the language to describe myself, but even with the
education and experience that I have had, the descriptions found in academic work and medical
publications rarely provided anything more than not well defined jargon. For example, an
understanding of “executive functioning” is very important to understanding ADHD and autism.
As I read articles and books, nearly every one referred to executive functioning and provided a

20

quick description of the concept. ADDitude Magazine, one of the most popular online
publications for a lay audience related to ADHD, provides this description which is fairly typical,
“People with executive dysfunction struggle to organize and regulate their behavior in ways that
will help them accomplish long-term goals” (Rodden & Saline, 2021).
I appreciated that even this simple description offered an explanation for my perceived
failures, but it didn’t fully satisfy my anxieties. The narratives that I have created over a lifetime
of experience are tough to overcome, and the thrust of the explanation from medicalized
resources seems to be that I have trouble because I have trouble. Earlier this year, I stumbled
across a video that offers a different perspective on executive dysfunction, a TikTok post created
by a 16-year-old. Their post, the text of which opens this chapter, provides a more
comprehensive narrative of executive dysfunction as it is experienced, highlighting the role of
shame and stigma as well as the unconscious nature of executive functioning. This post gave me
a new way of explaining some of the trouble that I was experiencing, not only to others, but to
myself.
The medical model gave me the label of ADHD and sent me home with a bottle of
stimulants. The framework of a diagnosis and finding people with ADHD whose experiences I
could relate to was life changing. I began to understand things about myself that had baffled me
for decades and could see how often the most distressing parts of my experience were related to
shame and anxiety about things I now understand are functions of my neurochemistry instead of
a personal failing or character flaw. My experience felt reminiscent of the exclusion and isolation
described by autistic adults and it provided me a new lens through which the parts of the data
gained new significance in my interpretation

21

I have done a lot of work over the last several years to better understand myself and
accept who I am. It’s an ongoing process, some days it’s easier than others. I try not to dwell on
what could have been if I’d been diagnosed earlier, though I can’t help dredging up past traumas
and trying to rewrite their stories to include my new narratives. As I’ve become more
comfortable with myself I find myself less afraid of encountering a breach in my own life. I’m
still cautious, but I can more accurately predict myself and the world around me.
Now I get to choose how I respond to breach. I can run toward it or away from it.
Sometimes, running away is good, grabbing the first explanation that my old narratives offers
that as the esteemed psychologist Jerome Bruner (1990) said, “keeps the uncanny at bay” (p. 52),
or as the Pragmatist theorist William James (1907) put it can “carry us prosperously from any
one part of our experience to any other part” (p. 58). Narratives offer us a roadmap or a set of
directions that will take us from point A to point B, they are a navigation system for life.
As I found community with other neurodivergent adults, I was able to begin to have more
self-compassion. One of the most profound changes has come from realizing that there is more
than one way to get from A to B. My experience of ADHD has been that the maps (narratives)
we are given to navigate our lives are made for neurotypical travelers. The maps handed down
by culture are in need of an update. We need to throw away the MapQuest print out that our
parents gave us and install Waze. Existing narratives, like a MapQuest print out, offer one route,
and no helpful advice for any unexpected but necessary deviation from the path. Waze is a GPS
based platform that uses real time data from real people in real life and offers alternative ways of
reaching a destination and support in the event of a wrong turn or traffic jam. The research and
services that claim to serve neurodivergent adults, have not done enough to offer alternatives, to
combat the shame and self-blame of difference. We have concentrated efforts on filling potholes

22

and installing guardrails along freeway MapQuest route, rather than exploring the surface streets
to see if they might be a better fit.
I share my personal story early in this work for a few reasons. I think it is important for
the reader to understand the context and lived experience that drives my interest in
neurodiversity, my belief in the ameliorative effects of leisure occupation, and the impact of
culture on my overall well-being. I was initially resistant to sharing my story, and I do so with
some trepidation. I know that some will dismiss my experience, because I did for most of my
life. Connecting with an accepting and open neurodivergent community, gave me a new path.
Now I can choose where I want to go and find the best route to get there.
With the remainder of this chapter I will provide a brief background of autism, followed
by short descriptions of several key theoretical concepts that were instrumental in the
formulation of my research questions and methods as well as the analysis and interpretation of
data. Breaking slightly from traditional research dissertation formatting, a more comprehensive
cultural and historical context will be provided in a prelude and interlude to the findings chapters
ahead. This is partially a rhetorical strategy, reflective of my perception of a privileging of
neurotypical experience and the scientistic privileging of quantitative, “large n” modes of
inquiry. Removing this cultural context, hiding it away as “background,” and quarantining it
behind the dividing line of a methods chapter, ignores its relevance to participants’ experience
here and now.
Autism
The DSM-V defines Autism Spectrum Disorder as a neurodevelopmental disorder
featuring deficits in the areas of social and emotional communication and restricted or repetitive
interests and behaviors (APA, 2013). To be diagnosed with ASD, the deficits must be present
early in life and must cause an impairment that is deemed to be clinically significant. In lieu of

23

the previous differential diagnoses of autism, Asperger’s and pervasive developmental disorder,
the DSM-V presents a single diagnosable condition of ASD with a three level severity rating
based on the amount of support that is required.
Neurodiversity Paradigm
The ubiquity of technology in modern life has allowed autistic people to connect as never
before. “The limited social, networking, and organizational skills of people with AS [Autistic
Spectrum] together with their aversion to direct human contact, had prevented them joining
together to form an effective movement,” (Singer, 1998/2017 p. 53) but the internet did not
present the same barriers. Online spaces allowed autistic people to express themselves and build
community, forcing those who were paying attention to reconsider autistic sociality altogether
(Bagatell, 2010; Grinker, 2015; Grinker 2020; Ringland, Wolf, Faucett, Dombrowski, & Hayes,
2016).
In the late 1990s, the sociologist Judy Singer introduced the term “neurodiversity” to the
discussion of autism. For Singer, who is autistic, autism rests “somewhere in the borderlands
between disability and difference” (1998/2017, p. 27). Frameworks for understanding autism at
the time “put the cart before the horse. They look[ed] superficially at autistic deficits. While
ignoring their underlying causes” (p. 32) and cast autistic people as “having poor characters, bad
personalities, and even moral defects” (p. 31).
Neurodiversity was conceived explicitly as a “counter hegemonic ‘Social Movement’”
(Singer, p. 52) with three listed objectives, “1. Recognition. 2. Civil rights and an end to
discrimination. 3. Disability services appropriate to their level of functioning on the spectrum”
(p. 56). The framing of autism as a neurological difference within the expected and “normal”
range of human experience allows the label to shed some of its medicalized and disabling stigma.
The paradigm serves as the basis for a Neurodiversity movement, an explicitly political position

24

calling for the decolonization of neurodivergent bodies and minds (Savarese, 2013; Setzer,
2020).
While this dissertation was to be a study of barriers, what emerged was a story of cultural
breach. The neurodiversity perspective provides a frame of reference, a new narrative, with
which to consider neurological difference. I’ve come to understand in my own life the ways that
a hegemonic neurotypical culture is traumatizing for people who are different. It is also my
obligation, ethically speaking, to not ignore the meaning and priorities of the communities I
claim to serve. I have been entrusted to share the experience of the participants, leading to a
natural affinity for a neurodiversity perspective.
Autistic Adult Outcomes
While the core diagnostic features of ASD in the DSM-V are social communication and
interaction difficulties and restricted and repetitive behavior (APA, 2013), the outcomes show
that the challenges extend far beyond those domains. Levy and Perry completed a systematic
review in 2011, which demonstrated low rates of independent living, education, employment,
work satisfaction, and meaningful friendships and relationships in the lives of autistic people.
Compared to typically developing peers or other disability groups, autistic adults show poor
academic achievement (Roux, Rast, Anderson, & Shattuck, 2017; Shattuck, et al., 2011), high
unemployment and underemployment (Taylor & Seltzer, 2011; Roux, Rast, Anderson, &
Shattuck, 2017), poor community participation (Gray, et al., 2014; Myers, Davis, Stobbe, &
Bjornson, 2015; Shea, Verstreate, Nonnemacher, Song, & Salzer, 2021; Song, Shea,
Nonnemacher, Brusilovskiy, Townley, & Salzer, 2021), low quality of life (Graham-Holmes, et
al., 2020; Kamio, Inada, & Koyama, 2013; Mason, Mackintosh, McConachie, Rodgers, Finch, &
Parr, 2019; van Heijst & Geurts, 2015), and shockingly high rates of secondary mental health
diagnoses (Cooper, Smith, & Russell, 2017; Croen, et al., 2015; Lai, et al., 2019) regardless of

25

severity of the symptoms of their ASD. Further, multiple studies have indicated high
comorbidity of mental health symptoms. The social challenges that are a core feature of ASD
have been proposed as either a direct contributor to or an exacerbating factor for many of these
difficulties (Bauminger, Shulman, & Agam, 2003).
Up to 84% of autistic adults have been found to have one or more mental health
diagnoses, most commonly anxiety disorders and depression (Levy & Perry, 2011). Up to 14%
of autistic children (age 6-16) have expressed suicidal ideation or have attempted suicide,
compared to only 0.5% of peers with no diagnosis (Mayes, Gorman, Hillwig-Garcia, & Syed,
2013). Often the occurrence of depression and anxiety are directly related to feelings of
loneliness and social isolation (Adams, Sanders, & Auth, 2004; Barg, Huss-Ashmore, Wittink,
Murray, Bogner, & Gallo, 2006; Han, Tomarken, & Gotham, 2019; Hedley, Uljarević, Wilmot,
Richdale, & Dissanayake, 2018) Compared to typically developing peers, autistic youth have
“higher feelings of emotional loneliness and social loneliness” (Bauminger, Shulman, & Agam,
2003, p. 500). This loneliness is often falsely attributed to a desire for isolation on the part of
those diagnosed as autistic. In reality the desire for peer relationships is equal to that of a
neurotypical group (Locke, Ishijima, Kasari, & London, 2010).
Each year close to 70,000 individuals with autism in the US transition from the school-
based care system to the adult system (AJ Drexel Autism Institute, nd; Autism Speaks, 2021).
The Individuals with Disabilities Education Act of 2004 (IDEA) allows students who qualify to
remain in the school system until their 22nd birthday. Regardless of whether they transition with
a graduation and a diploma at 18 or with a certificate at age 22, access to services is dramatically
reduced in adulthood. Studies have shown that a diagnosis of an autism spectrum disorder

26

remains very stable over time, with 95% of childhood diagnoses remaining intact through
adolescence and into adulthood (McGovern & Sigman, 2005).
Despite the prevalence of ASD in adulthood and the poor outcomes showing a need for
practical supports and interventions, there has been little support from funding agencies for
research and program development beyond childhood. There is a broad consensus that more
needs to be done, but so far that has not translated into significant action. This exploration of the
community occupations of autistic adults is a chance to begin building a foundation for future
studies of the practical day-to-day concerns of autistic adults that remain unaddressed.
Theoretical Influences
In addition to supporting the development of my research plan, the following were the
core theories, philosophies, and assumptions that guided my interpretation and analysis.
Narrative
I was heavily influenced in all stages of this dissertation by an affinity for narrative
modes of engagement and inquiry. Narrative theory has guided the formation of my research
questions, the selection of data collection methods, my analysis, and the format of this document.
We learn to predict the behavior of others by their conformity to narrative expectation,
underscoring the shared nature of our stories. Lawlor (2020) notes humans learn and our cultural
institutions change “through narratively organized experiences and narratively driven
reflections” (p. 5). My understanding of narratives as culturally constructed and transmitted
(Bruner, 1990; Howard, 1991; Mattingly, Lawlor, & Jacobs-Huey, 2002) inspired an extensive
review of published histories of neurodivergence and the seeking out of original sources from
relevant historical periods.
Narratives, put simply, are the stories that we use to make sense of and navigate the
world around us (Bruner, 1991; Clandinin, 2006; Mattingly & Garro, 2000) and provide a moral

27

framework that guides our action (Bruner 1990; Mattingly, 2007). These can be the stories we
tell, but are also a cognitive mechanism for structuring and organizing memory, knowledge, and
experience. Intentionally or not, humans rely on narratives to organize the constant barrage of
sensory input that comes with existing in the world (Bruner, 1991). Jerome Bruner, one of the
most influential psychologists of the 20th century, proposed:
We organize our experience and our memory of human happenings mainly in the form of
narrative - stories, excuses, myths, reasons for doing and not doing, and so on. Narrative
is a conventional form, transmitted culturally and constrained by each individual’s level
of mastery and by his conglomerate of prosthetic devices, colleagues, and mentors. (p. 4)
Trouble arises when a new experience does not correspond to existing narratives,
potentially rendering their utility as organizational tools defunct. New experiences must be
integrated with our existing narratives in a way that, “renders the exceptional comprehensible
and keeps the uncanny at bay- save as the uncanny is needed as a trope” (Bruner, 1990, p. 52).
This becomes problematic for the research and medical communities when the narratives that are
privileged in decision making do not include those of the community we claim to serve. “The
meaning one attributes to emplotted events reflects expectations and understandings gained
through participating in a specific social and moral world” (Mattingly & Garro, 2000, p.3). If we
hope to affect change in the areas of life that are important to autistic adults, we must participate
in their “social and moral world” and listen to their stories.
Dr. Bruner (1991) conceived of the misalignment between experience and existing
narrative as the space where a new narrative can be created, he referred to these moments as
“breaches of the canonical” (p. 12). This dissertation was shaped by several key moments of
breach, moments either in a participant's telling of a story or in the actions being described that
caused me to reconsider certain assumptions that I hold related to neurodiversity and the ideals
espoused by American culture broadly. Over the past five years, my understanding of autism and

28

neurodivergence in general has been influenced by experiences engaging with autistic people
outside of the clinical or professional world of medicalized intervention. More specifically, my
experiences with participants in the three research projects included in this dissertation have led
me to question the relevance and truth of mainstream narratives of barriers to community and
service.
Narratives are informed by the culture, while at the same time they are the means through
which culture is created and transmitted. Bruner (1991), contends that it is through the accrual of
narratives over time that we “eventually create something variously called a ‘culture’ or a
‘history’ or, more loosely, a ‘tradition'’” (p. 18). Narrative processes imbue these histories and
traditions with an aura of truth, that serves a hermeneutic device for experience going forward.
These truths become the filter through which we process new experiences, and create new
narratives. When we recognize the dynamic interplay of culture and narrative, it becomes
necessary to unpack the sociocultural contexts that created our truth. To that end, historical
context will be integrated throughout this dissertation.
Occupation
I am an occupational therapist and an occupational scientist. I was drawn to this field
because of its relatively simple ethos that is perhaps best exemplified by the famous words of
Mary Reilly, “Man, through the use of his hands, as they are energized by mind and will, can
influence the state of his own health” (1963, p. 2). In other words, meaningful activity matters.
Occupations are the activities through which we make and find meaning, the activities that
define our identity, and the activities through which we maintain our social connections.
Many definitions have been put forward in occupational therapy and occupational science
literature for the concept of occupation. Wilcock and Townsend (2014), define occupation as,
““The practical, everyday medium of self-expression or of making or experiencing meaning,

29

occupation is the activist element of human existence whether occupations are contemplative,
reflective, and meditative or action based” (p. 542).
Occupational justice, like occupational science, begins with the assumption that
occupation has a powerful influence on health and well-being and asserts the right of every
individual to equal opportunity to engage in a range of meaningful occupations. The concept has
been embraced internationally with the World Federation of Occupational Therapists (WFOT):
Occupational justice is the fulfilment of the right for all people to engage in the
occupations they need to survive, define as meaningful, and that contribute positively to
their own well-being and the well-being of their communities…Occupational therapists
around the world are obligated to promote occupational rights as the actualisation of
human rights. This obligation encompasses addressing occupational injustices, initially
named in 2000 as occupational deprivation, occupational imbalance, occupational
marginalisation and occupational alienation. An early addition was occupational
apartheid” (WFOT, 2019, p. 1-2).
Injustice, in this perspective, is rooted in and affected by factors as wide ranging as “social
problems, significantly persistent poverty, economic restrictions, disease, social
discrimination, displacement, natural and man-made disasters, armed conflict, historic
disadvantage, and physical and mental ill health” (p. 2).
The examples of the effects of occupational injustice in scholarship are powerful but
limited in scope. Important work has been published on occupational deprivation in refugees
(Crawford, Turpin, Nayar, Steel, & Durand, 2016; Morville & Erlandsson, 2013; Whiteford,
2005), prisoners (Whiteford, 1997), and minority groups (Pooremamali, Morville, & Eklund,
2017; Whiteford, 2000), but there has been very little examination of the effects on populations

30

with disabilities or mental health diagnoses. A brief review of the literature found passing
mentions of the risks of occupational injustice in only a small handful of papers (Mason &
Conneeley, 2012; Rizk, Pizur-Barnekow, & Darragh, 2011) and conference abstracts (Crabtree
& Karp, 2015; Florindez, Diaz, & Blanche, 2014; Lee, Lawlor, & Park, 2016) related to autism
beyond childhood.
Community and Belonging
The social deficits seen in autism have led to a common misconception that autistic
individuals do not have that capacity for or an interest in social engagement (Grinker, 2010;
Solomon, 2012). Prominent theories of autism continue to reinforce this notion (Dickerson, Rae,
Stribling, Dautenhahn, & Werry, 2005; Richardson, 2018; Ringland, Wolf, Faucett,
Dombrowski, & Hayes, 2016), despite a vast and growing body of writing from autistic
individuals that challenges this line of thinking (Bagatell, 2010). As a result of the false
assumption that autistic people are neither interested nor competent to participate in social
occupations, they are left out of activities and occupations that neurotypical peers engage in. Not
only are they left out of activities that may turn into skills and interests, they are denied the
opportunity to engage socially and become a part of a larger community.
Community is a concept that is subtly complex. It can be a place, a feeling, or a group of
people. In this project, I’ve endeavored to understand the meaning of community in the barriers
faced by neurodivergent adults. One important conception of community is that of a group with a
common interest or practice. These groups are not necessarily location based, though they can
be. This version of community is a cultural unit that can establish norms and practices that
impact the day to day lives of individuals across contexts. Shared values of the community are
reflected in opportunities for individuals to engage. Accommodations and services are a

31

manifestation of community in this sense, as the place where the rubber meets the road and
values of inclusion and equity are translated into action.
Participants' concerns about community safety require the consideration of community as
a physically-bounded area such as a neighborhood or a city. Community is a setting for
meaningful occupation that one must access for work, leisure, and instrumental activities of
everyday living (IADLs). Extensive scholarship related to access and safety in public spaces has
led to a proliferation of this location based framework in fields like community policing
(Cordner, 2014), community development (Bradshaw, 2007), and community health (Nyamnjoh,
2007; Sanders, 1964).
The final relevant conception of community is a more theoretical construct that Merriam-
Webster calls “a social state or condition.” This is what has often been referred to as a sense of
community (McMillan, & Chavis, 1986). A sense of community does not rely on geographic
boundaries; instead it is a feeling of belonging that occurs based on shared interests, activities,
and norms. While individuals often find a sense of community with others in close physical
proximity, the rise of the internet has allowed for non-geographically defined communities to
flourish (Rovai, 2002). This sense of community is a great protective factor against depression
and anxiety (Hagerty, Williams, Coyne, & Early, 1996; Kawachi, & Berkman, 2001; Stebleton,
Soria, & Huesman, 2014).
Belonging
One framework from occupational science that is useful is Wilcock’s theory of “doing,
being, and becoming” (1999). Doing, being, becoming, and belonging represent the four key
components of occupation according to Wilcock’s Occupational Perspective of Health (2006), a
framework for connecting occupation and health. Through a “dynamic balance” (Wilcock, 1999,
p.2) of these components a person is able to live up to their full potential and potentially find a

32

sense of community. As the concept was originally conceived, an individual’s identity is created
through a balance of doing and being. We “become” who we are as a product of this balance. In
a 2006 revision of this framework, Wilcock added a third “b” word: belonging.
Belonging “highlight[s] social interaction, mutual support, and friendship, a sense of
inclusion and affirmation from others” (Hitch, Pepin, & Stagnitti, 2014, p. 239). Doing is the
action of occupation; it is the willful initiation of bodily and mental functions to engage in a task.
Being “is about being true to ourselves, to our nature, to our essence and to what is distinctive
about us” (Wilcock, 1999, p. 5). It is our roles and our identity. It is the forces that shape our
actions and color our perceptions. Becoming “adds to the notion of being a sense of future” (p.
5). It is the purpose behind our action. Each element contributes to a dynamic shaping of the
impact of occupation.
Moral Dimensions of Community
Aristotle wrote in Politics in the 4th century BCE, “man is by nature a social animal.”
This basic tenet of interpersonal connection and interdependence has been echoed across the
globe and throughout time by philosophers, politicians, poets, and priests. Hierocles, a Stoic
philosopher in 2nd century CE Greece would argue that oikeiôsis creates the first ethical
imperative. Oikeiôsis describes an individual's recognition of themselves as the owners of their
lives. The Stoics believed that we are guided by animal urges to stay alive, but that through
oikeiôsis recognize ourselves as agents who have control over our actions. Hierocles organized
his ethical principle using a set of concentric circles. In the center circle he placed the mind or
the self, the second immediate family, the 3rd contained extended family, then town, country,
and eventually all of humanity. Our oikeiôsis can and does extend beyond ourselves to
encompass increasingly large circles, and Hierocles argued that it was our duty to extend

33

oikeiôsis as far as possible. When we extend our affinity to others we begin to consider their
needs as ours, their preservation as self-preservation.
This idea would become the primary building block of Western ethics. Judaism has
tzedakah “tzedakah guarantees the fulfillment of the basic needs of the poor as basic human
rights.” (Nussbaum, 1983,p. 228) Christianity idealizes charity and grace. The Parable of the
Bags of Gold in the Book of Matthew ends with the refrain, “whatever you did for one of the
least of these brothers and sisters of mine, you did for me” (NIV, 25:40). In Islam zakat is one of
the Five Pillars. Similar to tithing in Christian church but it’s 2.5% of discretionary income that
“is to be distributed among the poor and indigent” (Singer, 2013. p. 345). While zakat is
obligatory, Islamic teaching also encourages sadaqah, a voluntary giving or contribution to those
in need.
This idea of an ethical obligation to one another is not unique to traditions inspired by the
Greeks. Southern African philosophy and life is built upon a foundation of shared humanity
known as ubuntu. Ubuntu is captured by the words of African philosopher John Mbiti (1969), “I
am because we are; since we are therefore I am” (p. 215). There is a balance and responsibility to
each other inherent in this conception of the self in relation to others. Hindu, Buddhist, and Jain
traditions offer traditions of gift giving and alms giving to support individuals living an ascetic
life (Eck, 2013). Jain and Buddhist monks and Hindu sannyasa, abandon the material world and
rely on the gifts of strangers to survive. Hindu dan is an act of charity, given freely, with no
obligation from the recipient, or recognition desired by the giver that influences karma positively
(Bornstein, 2006). In Buddhism compassion or karunā is one of the key virtues for those seeking
enlightenment.

34

Hermeneutic Phenomenology
In the mid- to late-19th Century, naturalism was the predominant school of thought in
philosophy and the sciences. Naturalism is the idea that all things are a product of purely
biological, chemical, mechanical, or other natural causes and the sciences ought to be concerned
with understanding these causes (Habermas, 2008; Mahner, 2012). Autism research in the 21st
Century has not moved far beyond this school of thought, with the majority of funding dedicated
to determining the etiology of Autism Spectrum Disorder (ASD) and methods of early diagnosis
(Office of Autism Research Coordination, 2017).
Edmund Husserl pushed back against his late-19th Century contemporaries, arguing that
humans are more than a collection of reflexes and preprogrammed biological responses (Moran,
2008). People experience the world in unique ways that are the product of the interaction of
innumerable life circumstances and complex neural and mechanical reactions to stimuli. Husserl
argued that to understand the person it is more important to explicate the experience than the
underlying mechanics of any action (Cerbone, 2014). He called this new philosophy
phenomenology, a name taken from the Greek phainomenon which means “that which appears
or is seen” (Etymonline, n.d.).
Martin Heidegger was a student of Husserl’s who served as his personal assistant from
1920-1923 at the University of Freiburg (Cerbone). Heidegger would take the philosophy of
phenomenology and add a new analytical lens. This new form would be called hermeneutic
phenomenology. While Husserl’s phenomenology was concerned solely with experience,
Heidegger contended that experience does not happen in a vacuum (Newman, Cashin, & Waters,
2010). To truly understand experience, we must understand the context in which is occurring and
in which the person having the experience lives.

35

Hermeneutics phenomenology recognizes the central role of context in the formation of
ideas and the experience of events. Hermeneutics simply put is a theory of reasoning or
interpreting information that posits a constant process of (Bleicher, 2017; George, 2020). We
assimilate experience and information through existing knowledge, in a continual process of
reconciling the part, or the new, with the whole (our past experience, knowledge, and narratives).
In the chapters ahead, I will include relevant sociocultural history to provide a relevant context
for hermeneutic interpretation of findings.
Occupational science has embraced the phenomenological perspective of foregrounding
human experience in context (Eakman & Ikiugu, 2021; Jackson, Carlson, Manedel, Zemke, &
Clark, 1998; Larivière, & Quintin, 2020; Kinsella, 2012). Eakman and Ikiugu (2021) interpret
Heidegger’s dasein as the belief that, “we experience the world through our day-to-day practices,
and masterful use of occupation enables us to understand the nature of our world” (p. 110). The
relevance of hermeneutics to the practice of occupational therapy has been noted as “a method
that focuses on how to understand rather than the content of what is understood” ( Park, Bonsall,
& Fogelberg, 2021, p. 271).
Lived Experience
In phenomenology, lived-experience represents not only our unconscious perceptions but
also the processes of interpreting and translating experience into knowledge. In the world of
“fake news” and social media, it has become increasingly evident that an event may be
experienced very differently by people depending on what they bring into the event. People
experience the world in unique ways that are the product of the interaction of innumerable life
circumstances and complex neural and mechanical reactions to stimuli. The originator of
phenomenology, Edmund Husserl, argued that to understand the person, it is more important to
explicate the experience than the underlying mechanics of any action (Cerbone, 2014).

36

Understanding lived experience requires going beyond the self-reported description of
experience to include the broader context of Heidegger’s (1962/2010) dasein, or “being-in-the-
world.” Our experiences exist in relation to the world around us, to the physical world and the
social world.
The lived experience of autism is largely absent from the academic literature. There is a
growing body of first-person accounts of life on the spectrum in memoirs and online. Even in
these non-academic spaces, the experiences of professionals and parents are abundant and more
widely available than those of autistic people. Experience is multifaceted, “there is both
conjunction and disjunction in the stream of experience and, as such, neither should be given
exclusive priority, if an accurate definition is to emerge” (Throop, 2003, p. 233).
Pragmatic Theory of Truth
The story of truth in “western” philosophy is long, full of abandoned philosophies,
bygone religions, and the erasure of competing ideas. Around 400 BC, Plato explained the world
around him by insisting that there was a realm of “forms,” a plane of existence that housed the
perfect versions of all earthly things and ideas. This plane was unchanging, inaccessible to man,
and provided the ideal for all things. These forms included everything from the ideal rock to the
ideal form of “beauty.” Things in our plane of existence then were imperfect copies of these
ideals. This ideal form was adopted by the religions that would emerge over the next centuries in
the form of intelligent design (Clark, Foster, & York, 2007).
Truth, in this tradition, is a “thing” that exists apart from any element of our experience.
In 1637, Rene Descartes wrote, “I think, therefore, I am” as a new basis for truth. Descartes was
a mathematician, who was having doubts about the explanations for truth offered in his time. As
a man of numbers, the concept of truth was important to Descartes, and he began a process of
skeptical inquiry, seeking anything that could be seen as true. His answer was that the only thing

37

he could be sure of was that his thoughts were happening, they were real, and therefore so was
he. It was this seemingly simple statement that is often credited as the starting point of modern
Western philosophy (Scruton, 2004; von Schelling, 1994), with a renewed attention on
epistemology, or the study of the nature of knowledge. This period of skepticism saw the rise of
scientism as academics sought to classify and categorize the world around them (Burnett, 2994;
Lyons, 1999).
In 1787, Immanuel Kant’s Critique of Pure Reason was published, paying much greater
attention to the role of experience in the generation of knowledge. Reason, he argued, was not
the ultimate arbiter of truth, rather it was a human process of accessing knowledge that could be
a priori, which is knowledge that exists and is uninfluenced by human reasoning, and a
posteriori, which is that knowledge that is interpreted by the senses and open to interpretation by
the senses. For Kant an a priori truth was absolute, in the same way that Plato’s ideal form was
absolute, but even in these cases “truth consists in the accordance of a cognition with its object”
(p. 140).
By the end of the next century, the American Charles Sanders Peirce introduced a new
framing of truth and inquiry. Peirce saw a flaw in the scientific method, specifically the notion of
Cartesian doubt. For Descartes, and adherents to his method, the first step in the scientific
process is doubt or skepticism. Truth for the Cartesians is out there, waiting to be discovered,
and Cartesian doubt allows us to “demolish everything completely and start again right from the
foundations” (1641/1984, p. 1). Cartesian doubt, Peirce argued, was hyperbolic and symbolic, a
method rather than an emotion. For Peirce (1877), doubt could not be faked, and anything but
authentic doubt is insufficient to achieve change or new understandings:
Doubt is an uneasy and dissatisfied state from which we struggle to free ourselves and
pass into the state of belief; while the latter is a calm and satisfactory state which we do

38

not wish to avoid, or to change to a belief in anything else. On the contrary, we cling
tenaciously, not merely to believing, but to believing just what we do believe. (Peirce,
1877, para. 3)
Peirce’s new philosophy became known as pragmatism and was adopted and adapted by
prominent social, political, and academic thinkers of the19th and early 20th century America.
This was a time of incredible cultural change inspired by a changing economy. The 1863
Emancipation Proclamation began the formal process of transforming the United States from a
system that functioned on the labor of enslaved Black humans to a system that embraced the
factory and a new industrial form of capitalism. This period between Reconstruction in the 1870s
and the turn of the 20th century is frequently referred to as the Gilded Age. Railroads connected
coast-to-coast in the US for the first time, allowing both people and materials to move freely.
Factories along rail routes grew into industrial behemoths. Andrew Carnegie, Cornelius
Vanderbilt, and John D. Rockefeller became household names based on their control of entire
segments of the American economy.
The change of the Gilded Age was nothing short of revolutionary. The progress of
technology and the availability of commercial goods has transformed daily life for many
Americans. By 1900, it was becoming increasingly apparent that the benefits of this progress
were not being distributed equitably. Pragmatism was a philosophy developed in this era, a
philosophy that was critical of the dogmatic belief system that had created a reality in which the
owners stockpile immense wealth, while their workers are abused and hungry.
William James, in Pragmatism: A New Name for Some Old Ways of Thinking (1907),
offers a “theory of truth” (p. 55) that is the central philosophy of Pragmatism. He sets the stage
for this theory by speaking on the far reaching consequences of economic and social inequity. He
reads from a pamphlet detailing the death by suicide of one man unable to find productive

39

employment due to illness. He continues with the story of a "workingman, killing his children
and himself" (p. 32), and decries the religious and institutional leaders of the day who ignore this
reality by claiming to be in possession of a greater truth. James excoriates the religious
dogmatist, whether it is the scientistic view that seeks to “eliminate the whole notion of
influence, substituting the entirely different denkmittel of 'law.’” (p. 180) or a church "explaining
away evil and pain" (p. 32) with the promise of a rich and rewarding afterlife.
Pragmatists found little solace in the “laws” of science or the promise that the misery of
the teeming masses was justified by a truth they could access in this life. The realities of day-to-
day life demanded better explanation than these objective truths could offer. James provided a
new, Pragmatic theory of truth:
True ideas are those that we can assimilate, validate, corroborate and verify. False ideas
are those we can not... the truth of an idea is not a stagnant property inherent in it. Truth
happens to an idea. It becomes true, is made true by events. It's verity is in fact an event a
process” (James, 1907, p. 201)
For the pragmatist, truth is not a concrete “thing” that exists to be found. Truth is a way of
describing the individual human experience of an idea. James wrote that truth is, “any idea upon
which we can ride, so to speak; any idea that will carry us prosperously from any one part of our
experience to any other part, linking things satisfactorily; working securely, simplifying, saving
labor; is true for just so much, true and so far for, true instrumentally” (p. 58). A true idea then
becomes a framework for action, much like narrative for Bruner. James referred to facts as
“invaluable instruments of action” (p. 202).
Occupational therapy and, by extension, occupational science grew from and alongside
these Pragmatist ideas (Baranek, G. T., Frank, G., & Aldrich, 2020; Breines, 1987; Ikiugu, &

40

Schultz, 2006; Meyer, 1922). John Dewey, introduced an experimental Pragmatism to the field
of education with his concept of “learning by doing.” He partnered with social reformers and
activists to promote systems that would increase opportunity for all, including numerous
connections to the founders and early proponents of occupational therapy (Cutchin, 2004;
Cutchin Aldrich, Baillard, & Coppola, 2008; Yerxa, 1992). Dewey’s concept of “learning by
doing” is reflected today in the definition of occupational science given by Lawlor (as quoted in
USC Chan, 2019) “living and learning in everyday life.”
Truth is an adjective, rather than a noun in pragmatism. What may be true for one person
may not be for another. With that in mind, in this dissertation, I question whether the truth of
autistic adults is considered in the development of research, interventions, or supports.

41

Chapter 3: Methods and Procedures
“As a late diagnosed autistic person, the high volume of peer reviewed research papers that can
only be properly described as utter nonsense, has been something of a revelation.” -Graham
Mead, @twillierod, Twitter, 2021

Contribution to Occupational Science
Mary Reilly was one of the first three people inducted into the Academy of Research by
the American Occupational Therapy Foundation (AOTF), receiving the honor for her work in
developing an occupational behavior framework. As the chair of the occupational therapy
program at the University of Southern California in the 1960s and 1970s, Reilly was
instrumental in creating the first graduate degree in occupational therapy that included a
philosophical background of occupation. Reilly is perhaps best known today as the originator of
a phrase that has come to represent the ethos of occupation and is one of the most quoted in OT
literature (Clark, 2012). In a 1963 Slagle Lecture, Reilly said, “That man, through the use of his
hands as they are energized by mind and will, can influence the state of his own health” (p. 6).
Reilly described these words as “the hypothesis upon which our profession was founded. It was,
and indeed still is, one of the truly great and even magnificent hypothesis of medicine today” (p.
6).
If occupational therapists and occupational scientists continue to believe this to be true,
we must also recognize the inverse: that the absence of meaningful activity can have a
detrimental effect on health and well-being. In the seminal literature in occupational science,
occupation is defined as “chunks of culturally and personally meaningful activity in which
humans engage that can be named in the lexicon of our culture” (Clark, et al., 1991). While I
appreciate the emphasis on the cultural components of occupation in this definition, my

42

experience with the autistic community has caused me to question whether a narrow reading of
“the lexicon of our culture” excludes neurodivergent voices.
This project includes those voices but also the voices of community members of autistic
adults. It is my intent that the neurotypical voices found here stand in support of autistic
perspectives rather than in place of them. Occupational scientists acknowledge the importance of
lived-experience (Bonsall, 2012; Lawlor, 2020; Whiteford, 2011) and many have embraced
participant and community-based research methods (Aldrich & Marterella, 2014; Asaba, &
Suarez-Balcazar, 2018; Florindez & Florindez, 2018; Haywood, Martinez, Pyatak, & Carandang,
2019). It is my hope that this project can contribute to the body of knowledge related to the
influence of culture on occupational engagement and the subjectivity of meaning.
Methodology
My aim in this study is to shed light on the experiences of autistic young adults. There is
no scientific consensus on which method or set of methods is the best to capture experience. As
discussed in the previous chapter, a narrative understanding of experience requires a varied
approach, using multiple sources of data and informants. I will bring together methods employed
across qualitative research such as interviews, participant observation, and a form of group
interviewing known as Collective Narrative. Using bricolage, each of these methods will
combine to provide a holistic picture of the phenomena of leisure as it emerges in the real world
and as it is interpreted by participants.
Narrative research does not happen exclusively in the field. The delicate balance of
listening, interpreting, and framing someone else’s story to tell a larger truth happens somewhere
between the ears of the researcher. The narrative researcher is not simply a stenographer. Unlike
methods that are more quantitative in nature, there is not a clear and established method for
conducting narrative or phenomenological research. The methods used can depend on the focus

43

of the study, theoretical background, or the particular group that is being studied (Andrews,
Squire, & Tamboukou, 2013; Fraser, 2004). There are, however, key ingredients that go beyond
simply recording and reporting a person’s story.
The data presented here came through techniques found in traditional ethnography along
with what Mattingly (2010) calls narrative phenomenology. In narrative phenomenology,
experience is analyzed on a temporal horizon that begins before an event occurs. We are
embedded in a cultural world, with a set of norms and rules that affect our interpretation of
experience through conscious and unconscious processes. To understand an experience from this
perspective, one must understand the cultural world in which the experience takes place. Next,
there is the event being experienced. During and after the event humans use narrative processes
to contextualize the experience and encode it into a memory. Narrative phenomenology requires
the use of methods to examine the experience across time, with and without the interpretation of
the participant.
Lawlor and Mattingly (Lawlor & Mattingly, 2001; Mattingly, C., Lawlor, M., & Jacobs‐
Huey. 2002; Solomon & Lawlor, 2018) have employed a narrative phenomenological
methodology for several funded studies, including a nearly 20 year-long longitudinal study of the
experiences of families of African American children with disabilities. In these studies, narrative
was not simply conceived of as the stories that are told, instead narrative describes the processes
by which people make sense of their worlds. Narrative orders experience and is the method
through which we go about “constructing reality” (Bruner, 1986, p. 11). Narratives about our
futures guide the choices that we make today and the way that we interpret and analyze our
experience (Mattingly, 1998).

44

Research Questions
● What is the experience of autistic adults related to societal and cultural barriers to
community engagement (e.g., leisure, sense of belonging)?
○ What factors exist that serve as barriers to community engagement?
○ What factors influence the perception of benefit from community engagement?
● In what ways are these structural barriers a contributor to distress for autistic adults?
● In what ways are barriers to community engagement socioculturally constructed and
reinforced?
Sources of Data
The data presented in this dissertation has been taken from three separate but closely
related studies conducted between 2016 and 2021. One project, initially developed for this
dissertation, sought autistic adults to share their experiences related to community-based
occupations. The other two projects (Adult Collective Narrative and Autism in the Community),
were supervised by principal investigator Dr. Mary Lawlor, seeking to understand the experience
of autistic adolescents and young adults and their families. Together, these interviews provided a
means of accessing the post-reflective assessment of a community engagement and help to
situate the experience in a broader context of the individual and their social environment. Table
1 provides a summary of the data available for analysis at the time of this dissertation.

45

Table 1.
Adult Collective
Narrative (ACN)
Autism in the
Community (AIC)

Adult Dissertation
Cohort
n= 6 20 2
Participants Parents of autistic
AYA (age 10-29)

Autistic AYA (age
10-29), parents,
provider

Autistic adults (age
23-29)
Data Collected 10 collective
narrative interview
sessions from
summer 2016 –
summer 2020
Community-based
interviews (avg = 1.5)

Multiple interviews
over 6-10 months
Notes Final session held on
Zoom, data from 4
mothers included
Used in development
and triangulation of
themes and findings

Interviews on Zoom
and text depending
on participant
preference

The first of those projects to begin was our Adult Collective Narrative study. Collective
narrative is a form of group-based interviewing using narrative modes of engagement that has
been developed by Dr. Lawlor and Dr. Cheryl Mattingly (Lawlor & Mattingly, 2001; Lawlor &
Solomon, 2016; 2017; Mattingly, C., Lawlor, M., & Jacobs‐Huey. 2002; Solomon & Lawlor,
2018). In my time as a Master’s level research assistant in Dr. Lawlor’s lab, I had been given the
opportunity to study the transcripts of previous collective narrative groups and was regularly
surprised by the depth of stories that were shared in these meetings. During my first year as a
PhD student, I leapt at the chance to work with Dr. Lawlor and Dr. Emily Ochi to conceive of
and create a new collective narrative group that would be concerned with the experience of
autistic adolescents and young adults. The Adult Collective Narrative (ACN) group was made up
of five mothers and one father of autistic adolescents and adults. The children of participants
were between the ages of 13-24 at the time of the first ACN session. Parents described the sons
and daughters as possessing a wide range of strengths and challenges related to autism. We met

46

in person in a private conference room near the campus of USC to discuss their experience
accessing services and supports and accessing the community more broadly. From the summer of
2016 through the summer of 2020, the group met 10 times, with the last meeting moving to
Zoom as a result of COVID-19 precautions. One mother attended infrequently and the father that
was enrolled only attended one meeting with his wife who was another enrolled participant. The
group was quite diverse given the small size. Variation existed in the sample across demographic
categories of race, religion, socioeconomic status, and education level, though no detailed
demographic data was kept.
The second research project, known as the Autism in the Community (AIC) study, led by
Dr. Lawlor was a broad narrative phenomenological examination of community involvement and
engagement for autistic adolescents and young adults. I worked closely with Dr. Lawlor to
develop the research plan and interview protocols for this project with the plan of using this data
to inform my dissertation work. To date, 20 participants have been enrolled and interviewed
between 1-4 times each (μ=1.5). Recruited through established clinical relationships and
professional networks, participants in this study are autistic adolescents and young adults (AYA)
(ages 10-29) and members of their communities. We have defined community members as
family members, friends, employers, co-workers, teachers, service providers, or other people
who have regular interaction with an autistic person or persons in our target age range
The final source of data collected for this dissertation, came from two autistic adults who
engaged in in-depth narrative interviews related to their experience accessing community and
leisure occupations. My initial meeting with each of the participants took place over Zoom. We
discussed the nature of my research project and communication styles and preferences prior to
the informed consent process. Each of the participants engaged in an ongoing semi-structured

47

interview over several months. Though the form of the interview varied to meet individual
preferences, the subjects covered were the same in each case.
At each stage, field notes were kept to provide important contextual information and a
space for reflexive processes. During interviews and observations, minimal notes were taken to
serve as cues for later reflection. After each interview, I added to the notes, jotting down initial
impressions, subjects to explore in academic literature, and any reflections on my experience
conducting the interview. As I began transcribing and then analyzing data, I filled the pages of a
small, green Moleskine notebook with important themes and moments that were surprising.
These notes tracked the development of the ideas that have become this dissertation. In the
chapters ahead, passages from these notes are included.
An in-depth review of academic and other published literature related to the history of
disability, autism, occupational therapy, and the American medical system serves to ground my
analysis and provide background for claims of the cultural construction of autism. When
possible, online archives were used to review primary source historic documents. A hermeneutic
approach was undertaken to better understand the cultural contexts of significant moments in the
development of our cultural narratives related to autism. Particular attention was given to
writings by neurodivergent authors whose voices have been largely absent in academic
publications (Milton, 2020; Milton & Bracher, 2013). Online publications and social media
postings highlighting the autistic experience are included as a means of providing a more
complete background than what can be gleaned from traditional academic sources.
Historical and cultural sources of information are integrated throughout the findings
chapters of this dissertation. This structure is informed by the idea of the hermeneutic circle: the
continual process of interpretation and integration of new experience with existing knowledge

48

and narratives. Rather than siloing "background" material in chapter two, I chose to include it in
places that would contribute to the hermeneutic loop of interpretation and indicate its importance
to the lived experience of people here and now. This approach provides an opportunity for the
hermeneutic cycle to repeat, allowing readers to integrate background and research data to
provide deeper understanding of the truth of the autistic experience.
The combination of methods of inquiry in this study serves as a means of triangulation of
findings. Triangulation serves to validate the researcher’s interpretation of data by providing
multiple perspectives that can be compared. Flick (2004) differentiates data as coming from
“reactive” and “non-reactive” (p. 180) sources. A reactive source is one in which the research
participant is reacting to the researcher (e.g., answering an interview question, filling out a
checklist or questionnaire), while a non-reactive source is something that occurs naturally
without possible contamination or influence of a researcher (e.g., document review, family
photos, home movies). Throop (2003) distinguishes data collection methods as being either pre-
or post-reflective. Pre-reflective data collection occurs as action unfolds through observation or
documentary evidence (e.g., photos, video, audio recording) while post-reflective data is filtered
through the context and experiences of the informant (e.g., interviews, fieldnotes).
Interview
This dissertation includes semi-structured interviews with autistic individuals across a
wide range of abilities. Various stakeholders were also interviewed, including family members,
friends, employers, service providers, and practitioners. Interviews were held in the
interviewee’s home or private areas of community settings before the social distancing
requirements of the pandemic. For safety reasons, interviews occurring after February of 2020
took place online on secure two way communication platforms such as Zoom. Initial interview
guides were constructed based on findings of previous autism studies and a review of published

49

literature. The interview guides were tested with three autistic adults and revised based on the
experience and their feedback. Each of the autistic adult participants was interviewed at least two
times, allowing the team to review interviews and develop follow-up questions to address salient
themes. Interview styles were tailored to meet the communication styles of autistic participants.
Generally, interviews began with open-ended questions that may elicit narrative answers and
became more concrete and specific over time if necessary.
Gadamer (1975) argued that language is the primary building block of understanding and
that, without it, we cannot begin to process and interpret our experience. This presents a potential
difficulty for conducting interview-based research with autistic participants. Deficits in social
communication are a primary diagnostic feature of autism. The severity of these deficits ranges
from individuals who lack any apparent expressive communication to those whose deficits are
nearly imperceptible in some situations. Anecdotally, in over a decade of working with a wide
range of individuals on the autism spectrum, I have never met one who was unable to
communicate. The modes of communication may not be familiar to the average neurotypical
individual, but even the most impacted people had ways of communicating their needs and
desires. That is not to say that every person I have worked with had the ability to complete a
survey or interview or to describe to a researcher his or her experiences.
Recognizing that the onus is on the researcher to create an environment and interview
strategy that complements the communication style of their participants, efforts were made in
initial meetings with neurodivergent participants to discuss the need or desire for
accommodations in the format of interviews. Preferences were incorporated into interviews
going forward. Interview guides were tested with members of a stakeholder group of autistic
adults and clinicians. Accommodations related to the duration of a single interview and the mode

50

of delivery of questions and responses (ie, verbally or in writing) were considered. One autistic
adult participant requested questions and responses in writing following our initial meeting.
Collective Narrative
Collective Narrative is a method developed by Lawlor and Mattingly over the course of
two National Institutes of Health funded longitudinal research projects (Boundary Crossings:
Resituating Cultural Competence, National Institute of Child Health and Human Development,
National Institutes of Health, Grant # 2 R01 HD38878-01A1; Autism in Urban Context: Linking
Heterogeneity with Health and Service Disparities National Institutes of Health, National
Institute of Mental Health, Grant # R01 MH089474, 2009–2012) to elicit stories in a group
setting of living with or experiencing a given phenomenon. The method draws on narrative
inquiry methods to elicit stories likely to touch on themes and concepts important to participants.
The social context of these group interviews allows for the generation of powerful data around
engagement, cultural beliefs, and management of challenges associated with a variety of
disabilities and diagnoses (Mattingly, Lawlor, & Jacobs-Huey, 2002; Lawlor & Solomon, 2017).
Field Notes
Interviews for this project took place over a period of several years. Even the most
experienced researcher cannot expect to recall details about each interaction months or years
later during the process of analysis and writing. Fieldnotes serve as a method for the field
researcher to record important contextual information and track assumptions and perceptions of
situations as they unfold. Emerson, Fretz, and Shaw (2011) have outlined a method for creating
field notes which has been followed for this project.
The field note is not limited to the jottings that are made in the field. While it is important
to take notes in the moment, the researcher must remain present in the moment with their
participants. Jotting down key observations or diagrams of rooms or action can be important

51

triggers for memory later, but it is also important to expand on these initial jottings as soon as
possible. Audio recordings are a common tool for a researcher to get their thoughts out quickly
and completely. When audio field notes were created for this project, they were transcribed and
saved following the same data management protocol as interviews and observations. Fieldnotes
were written following interviews and participant interactions, as well as at stages in the process
of the conception of the project and the analysis of data.
Participants
In this dissertation, stories told by the two autistic adults from my dissertation study and
four mothers from the ACN group will be shared. Stories were chosen that represented themes
found in analysis and coding of all sources of data. While the details of any given situation may
be unique to an individual participant, the experiences shared resonate across the range of
participants in each of the three studies that contributed to this work. The details of the studies
and samples are found above.
The full body of data from each of the three research projects was examined, coded, and
used in evaluating themes and developing the ideas outlined in the chapters ahead. Rather than
introducing each participant individually, in this section, I will introduce key participants from
the ACN and adult dissertation studies whose stories and experiences have been included
directly. Data from the AIC project has been incorporated throughout and was crucial in analysis,
though the specific narratives ahead are taken from the participants introduced below. All
participants have been given pseudonyms to ensure confidentiality, in keeping with ethical
guidelines for this type of research. The use of pseudonyms should not be read as claiming a
need for protection from shame or stigma, but the use of these assumed names allows for some
freedom in exploring topics that are sensitive or personal.

52

Collective Narrative Mothers
Ella (she/her) is the mother of an 18-year-old autistic daughter named Maya (she/her).
Maya spent several years in a “therapeutic residential environment,” but is now at home with
Ella. The two live with Ella’s sister and nephew who is also autistic. Maya was diagnosed at the
age of 4, despite Ella raising concerns with multiple medical providers years earlier. As a Black
girl, Maya’s experience with delayed identification of autism is typical (Bobb, 2019). To this
day, Black girls are routinely misdiagnosed and underdiagnosed (Fombonne & Zuckerman,
2021). Maya speaks to communicate.
Deborah (she/her) is Ted’s (he/his) mother. Ted is a 29 years old man of European
Jewish descent. Deborah was involved in advocacy, creating an organization alongside her
husband. She describes her son as, “behaviorally...he’s very challenging, but he's also very smart
and a really great person.” Ted does not speak. He types or uses a letterboard to communicate, a
laborious process that requires adjustment from typical modes of conversation. “It can take 5 to 8
minutes to write a sentence,” he’s developed a shorthand with family and caregivers who have
been with him for years. They understand his vocalizations and gestures, and offer an array of
choices, ranking systems, and other ways to reduce the labor necessary to communicate.
Marie (she/her) is the mother of Jake (he/his). Marie is an Asian-American entrepreneur
who stepped away from her business when Jake was diagnosed as a toddler. Jake is also a non-
speaking typer, a fact that is central to one experience shared in the chapters ahead. Jake types on
a standard keyboard, slowly and with great effort needed to overcome motor challenges. He is
generally accompanied by an aide or a family member, who give voice to the words that Jake
types. The internet has provided Jake a mode of engagement that doesn’t rely on an outside
voice, and where typing is not viewed as atypical.

53

Megan (she/her) is the mother of Frank (he/his). The 18-year-old lives with his mother
and grandmother Gloria. Frank was diagnosed at three-and-a-half-years old. Frank is
“completely non-verbal,” with limited expressive communication overall. His awareness of his
social environment and understanding of what is being said is obvious in his responses. Megan
describes her son as intelligent and charming, though she worries about his tendency to be
affectionate and “touchy-feely” as he ages. Tendencies that were seen as cute and innocent from
a young Black child can be interpreted as threatening and violating from a six-foot-one Black
man, Megan noted.
Autistic Adults
Brian (he/him), 30 years old, is an Asian-American, a writer, and a self-described
“cinephile for life.” We first met on a Zoom call in the early weeks of the COVID-19 shutdown.
Brian was calling from his bedroom in his parents suburban West Coast home. He discovered a
love of writing in a high school English class and enrolled in a college program after graduation.
It was here that Brian’s mental health became a concern for his family and for himself. He
recounted anxiety and depressive symptoms leading to property destruction and self-harming
behaviors. He withdrew from school and went back home, where he would receive a diagnosis of
autism at the age of 20. After the diagnosis, he returned to college and completed his degree in
English. While Brian communicates verbally, he preferred to answer questions in writing, feeling
it would allow him to more fully express his answers. Questions were given one or two at a time
and Brian would respond, generally within minutes. In this format interviews stretched over
multiple days, with a few volleys of questions and answers each day. When asked to describe
himself Brian said:
I am an openly gay man on the autism spectrum. I am aware of my own personal
differences compared to "normal" people in the real world. I might not have a normal
brain, and I am not heterosexual, but I do have a good heart. I have the willingness to

54

love others, but some people will hate me because I am me. Nevertheless, I know who I
am, and I act the way that I do without hurting anyone else in the world.

Dylan (they/them), is 23, a student, an artist, and a participant in anime fandom culture.
Dylan lives at home with their mother, a special education teacher in the “small town” high
school that Dylan attended. With a more “classic autism” presentation and need for more
intensive support, Dylan’s brother was diagnosed at a very young age. Dylan would receive an
autism diagnosis at age 12 while participating in a research project focused on the siblings of
autistic individuals. Dylan became interested in Japanese culture and language and began
working toward a career in language education. They came close to completing a Bachelor’s
degree, describing their time in college as “kind of rough for me.” After returning home from
college, Dylan dedicated their efforts to their art. They have now gone back to school, taking
classes at a school closer to home at a slower pace than the previous college experience. Our
meetings happened on Zoom with Dylan calling in from their Pacific Northwest family home.
They wore a Sailor Moon t-shirt and head of blue and purple hair when we first met, and
eventually would clue me in that the wardrobe racks of clothing visible in the back of the frame
were highly prized fandom inspired clothing and cosplay outfits.
Limitations of the Study
The sample size is a limitation of this dissertation study. Ideally, more autistic adults
could have been recruited to participate. The occurrence of the COVID-19 pandemic during this
research project changed the expected methods of data collection available, limiting access to
observation of occupations in natural contexts and reducing the available time to engage with
participants. Concentrating my recruitment on “young adults” between 18-29, limited the pool of
available participants. The overwhelming majority of responses to my call for participants came
from autistic adults over 30, most acknowledging they were ineligible and admonishing my

55

exclusion of older adults. There is a very real mistrust of research within the Autistic community
(Benevides & Shore, 2020b; Boren, 2021; Pellicano, Dinsmore, & Charman, 2014), as I
corresponded with dozens of potential participants, only one did not raise the issue of trust and
past abuses of autistic individuals by researchers or clinicians.The limited size of the adult
sample naturally limits the broad generalization of their experience.
There is a trade-off between the depth of engagement with participants and the number of
participants in a study. More participants allow for research findings that are more generalizable
and speak more to the conditions faced by a community at large. A smaller number of
participants allows the research team to spend more time with a participant and potentially to
gain a richer and more complete data on the experience of each participant. The nature of this
study required a small number of participants to gain in-depth understanding of experience that is
key to answer the research questions.
Presentation of Findings
It’s important to acknowledge our own biases as researchers. I am not autistic, but I am
neurodivergent. I have experienced the world in a way that is not always in line with the majority
and recognize the effects of ableism and a normalizing culture on my own identity and well-
being. These shared elements of neurodivergent experience provide a context that neurotypical
readers do not share, and efforts were made to ensure conclusions that were self-evident to me
were explained in sufficient detail to overcome hegemonic neurotypical conceptions.
I have chosen to intersperse relevant sociocultural data through the findings chapters,
rather than present these components of the narrative in isolation. Hermeneutic interpretation is
an ongoing process, a circle (Gadamer, 1975; Heidegger, 1967; Ricoeur, 1981) of experience and
understanding that inform one another as our narratives unfold (Mattingly & Lawlor, 2001). It is

56

my hope that by removing the distinction between background and findings that readers will find
more utility in these sections as a hermeneutic tool.
Findings related to several main themes are presented. These themes include, the scarcity
of meaningful opportunities for service or community engagement across the liefspan, the work
of mothers to overcome barriers to inclusion, systemic barriers to public safety, and autistic
adults' experiences of finding and maintaining community from adolescence through early
adulthood. These themes emerged from analysis of data, and when possible, specific areas of
interest were probed in subsequent interviews with participants in an attempt to elicit narrative
modes of engagement with the themes.
Enhancing Rigor
Multiple Perspectives
The phenomena of community engagement is made up of a tapestry of competing and
complementary notions. Human behavior is rarely simple or straightforward. Seemingly simple
occupations as they occur in the world can be viewed through many differing and sometimes
competing lenses. The same self-stimming hand flap may be viewed as a product of sensory
dysregulation by an occupational therapist, as a disruptive behavior by a behavior analyst, a
communicative expression of joy by a parent, and as a soothing distraction by the person
engaged in the behavior. Depending upon the experience of the observer and the social context, a
hand flap might be seen as aberrant behavior in need of fixing or a leisure occupation that brings
joy to individuals. Haywood and Lawlor (2019) argue that instead of fretting about which
perspective is the truth, ethnographers and phenomenological researchers ought “to embrace the
puzzles posed in an epistemological way of ‘how could it be?’” (p. 129).
For me, the power of phenomenological research comes in the eschewing of objective
truth in favor of verisimilitude (Bruner, 2010). Each of us brings our personal experiences and

57

our personal narratives into a situation. We interpret the world through these lenses, giving each
observer and participant a unique perspective. As a researcher of lived experience, it would not
be in my interest to spend time and energy correcting the record and reporting exactly what
really happened on any of those days—that is the work of journalists and detectives. Instead,
narrative research allows us to listen to the content and context of a person’s stories as a way of
understanding the person. Phenomenology allows for a bringing together of multiple
perspectives to view an experience in a new complex way that is greater than the sum of its parts.
The anthropologist Michael Jackson (2009) reminds us that we live in “an empirically multiplex
world... a vexed and ambiguous zone that is not merely geographic or political...an existential
situation of being betwixt and between” (p. 17). To begin to understand leisure in this population
and tease apart the areas where researchers and interventionists can make a difference requires an
approach rooted in multiple perspectives.
Prolonged Engagement
There is a legitimate concern in this type of research that by observing a person we may
fundamentally alter their behavior. Heisenberg introduced the Uncertainty Principle to the world
of physics in 1927, showing that even at the level of atomic particles the act of measurement can
introduce interference and potentially alter the results. Sartre brought a version of this theory to
the human sciences in Being and Nothingness (1943/2001). This concept he called “the look” (p.
317), describes the shift in human consciousness that occurs while being observed. We become
aware of our actions in a new and profound way when we know someone is watching, or as
Sartre said “I am pure consciousness of things, and things, caught up in the circuit of my
selfness” (p. 317).
Prolonged engagement is commonly considered a tool to increase the validity of data by
both increasing comfort to reduce the effect of being observed and by providing an opportunity

58

to follow up on initial impressions (Creswell & Miller, 2000). Over time, the lines between
people and the power dynamics of a researcher/subject relationship can soften to allow for a
more comfortable exchange of information and perhaps a more honest or complete level of data
can emerge. Sensory adaptation is the process by which our nervous systems tune out a stimulus
over time, the way your socks might feel tight in the morning but you forget they are on by the
end of the day (Webster, 2012). Prolonged engagement can have a similar effect on the comfort
of a participant with the presence of the researcher. We can become less conscious of being
observed, and act more “naturally” as a result.
COVID-19 was a complicating factor in my ability to maintain prolonged engagement
with participants in this dissertation project. Rather than planned “hanging out” in the world as a
means of engagement, the pandemic required distance. Interviews were extended and took on a
larger role in the collection of data. Technology allowed for interviews to continue, with Zoom
offering “face-to-face” contact without the risk of an in-person meeting. As a result, I was able to
engage with adult autistic participants through emails and interviews over the course of 7
months, allowing for a good rapport to develop.
Reflexivity
The data collection process for this study included opportunities at each stage to engage
in reflective practice. This process began with the outlining of a version of the assumptions and
biases guiding the development of my research questions. These assumptions were about the
nature of occupation, a narrative and pragmatic theory of truth, and the social nature of humans,
and each have been expanded on throughout this dissertation. By recording these formative
thoughts, I am able to reflect on the impact of each of these ideas on the research process and in

59

any conclusions that I may draw from the data. Multiple methods and prolonged engagement
allow for the opportunity for challenging these assumptions throughout the process.
I have also engaged in an intentional process of interpretive reflexivity as described by
Lichterman (2017) during the writing and research of this dissertation. This involves not only
attempting to maintain an awareness of assumptions and their influence on the data collected and
the interpretation of that data but, crucially, requires maintaining an awareness of the social and
power dynamics of the research relationship. I entered the process of data collection with an
appreciation of the expertise of any individual on their own lives and on their own
circumstances. I am aware of the trepidation many autistic individuals have around research
participation (Haas, Costley, Falkmer, Richdale, Sofronoff, & Falkmer, 2016) and the long
history of abuses faced by marginalized groups at the hands of the medical establishment (Moon,
2009). I have recorded my reflections in fieldnotes and discussed them in meetings with my
advisor Dr. Lawlor, the Autism in the Community research team, and an advisory panel of
individuals from the autism community to ensure the maintenance of respectful and productive
relationships with participants and their stories.
Recruitment and Participant Selection
Participants whose narratives and experiences inform this dissertation came from three
narrative phenomenological studies with similar objectives of understanding the lived experience
of autistic adults. For each study participants were recruited through professional networks
cultivated by members of the research team and partnering community agencies. A snowball
sampling method was used to identify potential participants among the networks of individuals
previously enrolled. The ACN study was open to participants who could communicate (verbally
or in writing) in English. Parents of autistic adolescents and young adults (AYA; age 10-29)
were invited to participate. For the AIC study, autistic AYA (age 10-29), and family and

60

community members of autistic AYA were included. More specific information about
participants is found above.
Typicality is a method of sampling that places a focus on recruiting individuals who
represent a “typical” case in a population of interest (Stake, 1994; Pelto & Pelto, 1978). In
autism, presenting any single case as the typical case is somewhat difficult, but care was taken to
recruit a sample that was inclusive demographically and representative of a range of experience.
To confirm or disconfirm emergent themes throughout the iterative data analysis process,
maximum variation sampling (Miles & Huberman, 1994) was utilized to capture the experiences
of a wide swath of the autism spectrum by seeking out cases that do not neatly fit into
preconceived categories. Autism spectrum disorder is an extremely heterogeneous diagnosis, so
some purposive sampling has been undertaken to ensure variation and representation of
individuals with skills across the spectrum in the AIC and Collective Narrative projects.
Categories such as communication ability, living situation, level of behavioral impact, and
employment status were considered as areas of important variation in our sample.
Saturation
A common tactic in capping the sample size in qualitative research is to aim for
saturation (Patton, 1990; AHEC, 1994). This is the point at which bringing in new informants
and continuing to add new interviews does not yield substantial new information to what has
already been collected. Due to the heterogeneity of ASD this is difficult to achieve, but
experience on earlier studies by the Principal Investigator with family members of individuals on
the autism spectrum has led to the current sample size of the AIC and Collective Narrative
projects.

61

Procedures
One of the concerns pertinent to large qualitative studies is the difficulty in managing the
sheer amount of data generated (Miles & Huberman, 1994; Kvale, 1988). The data for this
dissertation has come from three distinct collections. First, a small cohort of participants
recruited for in-depth interview using the methods described above. The second source of data is
the ongoing Autism in the Community (AIC) research project being conducted by Dr. Lawlor
and her team. AIC is a narrative examination of community-based services and community
integration amongst AYA on the autism spectrum. Using a similar combination of methods as
this dissertation study, AIC is collecting data from a much larger group of participants including
family members, practitioners, clinicians, and community members. A third source of data is a
Collective Narrative group for parents of autistic AYA, that was led by Dr. Lawlor and Dr.
Emily Ochi. This larger corpus of data along with an extensive review of published accounts of
autism has provided a broader pool of background information and perspectives to inform this
project.
Data management conventions for the larger AIC and Collective Narrative projects have
been established based on the experience of the principal investigator and other members of the
research team. Based on experience and availability of resources, management of data collected
from the smaller cohort followed the same conventions. All interviews were audio-recorded.
These recordings were transcribed verbatim and organized following set naming conventions.
Once transcribed, the elements were imported into an NVivo project file. NVivo allows for
grouping files by participant and building “cases” that include all data collected from or about a
specific participant including audio, video, transcripts, and images. All data was backed up on

62

secure servers belonging to the Sensory Integration, Engagement, and Family Life research core
housed in the USC Chan Division of Occupational Science and Occupational Therapy.
Ethical Considerations
Each of the three studies were conducted with oversight and approval from the University
of Southern California’s Health Sciences Campus Institutional Review Board (IRB). Participants
are at minimal risk for any adverse effects due to participation in this study. The greatest risk is
the inadvertent exposure of data, which we will mitigate through secure storage of all elements
of data collected. Audio and video data will be stored on a secure server within the Chan
Division at USC, password protected access will be limited to members of the research team that
have been trained in the protection of research subjects through the USC Office for the
Protection of Research Subjects and approved by the IRB. Any physical data, from handwritten
fieldnotes to artifacts collected during observations and interviews are stored in a locked file
cabinet in a locked office.
Participants were provided with informed consent documents outlining the purpose of the
study, the risks associated with participation, potential benefits of participation, and the right to
control the frequency, quality, or duration of their participation in this study. Plain language
descriptions of the study and assent forms were available and all participants were given the
opportunity to ask any questions they may have and to take the consent documents home to
discuss with family or trusted confidants before signing. The informed consent process was
completed in person for Collective Narrative and AIC samples, while the autistic adult
participants completed the process over Zoom using a secure consent form on the REDCap
platform.

63

Data Collection
Data collection occurred in two overlapping phases. The first was undertaken as a part of
the existing Collective Narrative and Autism in the Community projects led by Dr. Lawlor. The
Collective Narrative project began collecting data in December of 2016. This project continued
until July of 2020 before being folded into the larger AIC study. AIC has been collecting
qualitative data on community-based services for AYA on the autism spectrum using interview
and observation methodology since December of 2018.
The smaller dissertation cohort of autistic adults has each participated in in-depth
interviews over several months during 2020 and 2021. Following procedures and methods
outlined above, each of the participants was interviewed specifically about their community
participation and engagement in leisure occupations.
Data Analysis
The themes that are presented in this dissertation are the result of a thematic and narrative
coding of all interview data from the AIC, ACN, and dissertation cohort. An initial thematic
coding scheme was developed at the outset of the project and added to as new themes emerged in
data. Themes related to research questions about community and leisure were included in the
initial codebook. As I reformulated my research plan in the wake of COVID-19 closures, I
returned to the data and to the unresolved moments of breach in my fieldnotes.
Following transcription, thematic coding of the data using NVivo analytical software was
completed. The coding scheme used in this project was developed iteratively beginning with a
thorough analysis of a single case by myself. Members of the AIC research team including Dr.
Lawlor were enlisted to review the initial coding scheme and provided feedback and additional
codes as necessary. Codes were added as appropriate based on emergent themes from the data.
Regular meetings with members of the AIC team and dissertation committee members were held

64

to review data analysis. All data was coded using an NVivo software package that allows coding
of text transcripts as well as audio files, video files, and scans or photos of artifacts collected in
the world.
To ensure validity in the coding and identification of emergent themes, two types of
validity checks were employed. First, triangulation was used to “address completeness,
convergence, and dissonance of key themes” (Farmer, Robinson, Elliott, & Eyles, 2006). Webb,
Campbell, Schwartz, and Sechrest (1999), describe triangulation as key to ensuring the validity
of data by examining a situation from multiple angles. This can take the form of multiple
methods, multiple investigators, or multiple sources (Denzin, 1978). This project utilizes each of
these types of triangulation to enhance the internal validity of our process and findings.
The second major method of validity checking that was incorporated into this research
plan was the use of peer debriefing (Morse, Barrett, Mayan, Olson, & Spiers, 2002). I have
discussed emerging themes and conclusions of my analysis with a group of trusted
neurodivergent peers. These individuals were drawn from my past professional and academic
communities. None of these individuals were involved in the collection of data and no data or
protected information was shared with them. They served as a means of ensuring my conclusions
were reflective of concerns of the community.
Financial Disclosures
Funding for this dissertation was provided by the University of Southern California
(USC) Mrs.T.H. Chan Division of Occupational Science and Occupational Therapy as well as
the USC Provost Fellowship and USC Ostrow/Graduate School PhD Fellowship.
Ethical Considerations
All research activities outlined in this chapter and conducted for this dissertation were
approved by the Health Sciences Institutional Review Board (IRB) of USC.

65

Organization of Findings
I would like to give a brief overview of the remainder of this dissertation. Chapter Four,
includes a historical analysis of cultural trends in the creation and continued refinement of the
psychological label of autism based on an in depth review of academic publications and original
documents from 1860 until the present day. The experiences of mothers of autistic teens and
young adults related to acquisition of services for their children across the lifespan are featured
in chapters 5-7. The constraining influence of philanthropy and the commoditization of services
is explored in a brief interlude. Next, I will present concerns of mothers and autistic adults
related to community safety, with specific attention given to interactions between members of
the Autistic community and the law enforcement officers who are socially appointed enforcers of
culture. In the final chapter, the life stories of two autistic adults will be shared.
Some of the stories ahead will not be pleasant, but they are a reality. It is not my intent to
paint autism as a tragedy, because I do not believe it is. That does not mean that the story is not
tragic, unfortunately. The systems we have built do not reflect the ideals that we claim. The
experience of participants indicates that strict adherence to and prioritization of neurotypical
“norms” creates environments that are incompatible with neurodivergent ways of being and
learning. Autistic participants paint a picture of a medical model that has instilled a sense of
shame and isolation, and a culture that is intolerant and unwilling to reexamine the faulty
foundations upon which our understanding of autism is built.

66

Prelude: The Culture Of Autism
The current culture of Autism is that Professionals decide what Autistic people need,
Professionals train other Professionals, Professionals apply the Services; Then
Professionals pat each other on the back and tell each other what a good job they’ve
done…
The reason I wrote this originally? The reason I started using it? Because I wanted to
shock.I wanted to hear that sharp intake of air. That gasp. I wanted people to feel
threatened, to feel seen, to be challenged. I wanted people to think. Because not many
people really do.
It's easy to hide behind a privilege that centres your existence, even when you know deep
down that centring your existence excludes others. It's easy to rely on systems that
perpetuate that centering of your existence, because it's comfortable. To challenge it takes
effort and time. It's easy to keep doing the same thing, committing the same harm,
perpetuating the same narrative when it's not impacting on your life.
The comfort of existence as a Neurotypical person is to the detriment of the existence of a
Neurodivergent person. To be Autistic is to be othered, shamed, disregarded,
dehumanised, stigmatised, marginalised.
Why? Because the current culture of Autism is that Professionals decide what Autistic
people need, Professionals train other Professionals, Professionals apply the Services;
Then Professionals pat each other on the back and tell each other what a good job they’ve
done. - Keiran Rose, The Autistic Advocate, 2021.

Most academic projects related to autism have a paragraph that “explains” Autism
Spectrum Condition. The paragraph most often includes diagnostic criteria from the most recent
edition of the DSM, the latest CDC prevalence rates, and if the space allows a sentence about
unknown etiology or a reference to Leo Kanner, the man credited with first describing the
diagnosis. An example of this type of paragraph can be found in the introduction to this
dissertation. This recitation of facts does little to actually explain what autism is. Autism is a
label. It is the label that modern medicine has placed on people who have one or more
specifically defined and measurable traits, based in neurology, that present in atypical ways
compared to their contemporary culture. We have a tendency to view many elements of modern
life as “without history” (Foucault, 1977, p. 139), rarely considering that they were created by
other humans “imposing the patterns inherent in the culture's symbolic systems-- it's language
and discourse modes” (Bruner, 1990,p. 34).

67

In this chapter, historical sources are presented to tell the story of how autism came to
exist. The first use of the diagnostic label came less than 100 years ago, making it a relative
newcomer to the history of human ideas. Understanding the cultural conditions that led to the
creation of the label of autism can impact how that label is applied today. Several published
histories of autism (Czech, 2018; Donvan & Zucker, 2016; Sheffer, 2018; Robison, 2016;
Silberman, 2015) were consulted and original source materials obtained through library and
online archival resources. The history presented here is far from comprehensive, but provides a
sufficient level of background information to underscore that what we know today to be the truth
about autism is not an objective one. Autism is a culturally constructed and constantly evolving
label. I will examine the foundation of our understanding of autism in the way the bricoleur
approaches construction. Houses are built piece by piece, starting with a foundation. When an
existing foundation will no longer support the house, the bricoleur begins excavating, seeking
points of weakness, flaws in the foundation that can be repaired or extended to accommodate
new additions. In 1913, Mary Lawson Neff, a neurologist and early proponent of the new field of
occupational therapy, criticized the reductionist views of mental illness that were common
among the medical establishment of her day, writing, “medical study, and the work already done
is absurdly inadequate” (p. 559). Today, one could say the same about the medical model view
of autism.
What is Autism?
In the late 1930s and early 1940s, two Austrian physicians began to take notice of a
cluster of impairments in children brought to them for psychological care. Leo Kanner (1943), a
physician and psychiatrist who began this research after emigrating to the United States, was the
first to publish his results in a study of 11 cases of a childhood “syndrome not heretofore
reported” (p. 242) that he would come to call infantile autism. The key traits of the syndrome

68

were an “inability to relate to themselves” (p. 242), delays in reaching developmental markers,
severely impaired or absent verbal communication, “excellent rote memory” (p. 243), echolalia,
literal thinking, an aversion to loud noises, moving objects, and a variety of foods, limited
interest or engagement with spontaneous activities, anxiety, actions that are “monotonously
repetitious” (p. 245), and an “obsessive desire for the maintenance of sameness” (p. 245).
Despite these challenges, Kanner found that his patients “are all unquestionably endowed with
good cognitive potentialities” (p. 247).
Back in Europe, Hans Asperger (1944/1991) was completing a study of a similar group
of children. His description of the traits of what he called “autistic psychopathy” was remarkably
similar to the description found in Kanner’s publication the year before, with the notable
exception of a lower degree of communication impairment. Three of the 11 patients written
about by Kanner were mute and the other eight were so impaired verbally that they were
described as functionally mute. Asperger’s cohort was less impacted in their verbal
communication, but even the least impacted were described as having a “linguistically original
form,” (p. 71) meaning they spoke in odd cadences, with odd affects, and using unusual words
for their age.
Asperger (1944/1991) provided a hopeful account of the disorder, indicating that the
intelligence found in some of his patients meant “the problems are compensated by a high level
of original thought and experience. This can often lead to exceptional achievements in later life”
(1944p. 37). While Kanner had achieved acclaim and was given credit for “discovering” autism,
Asperger was nearly relegated to the dustbin of academic history in the post World War II era.
His writings were published in German journals and would not be translated into English until
the early 1990s (Silberman, 2015).

69

How was it that two Austrian doctors working separately would describe this previously
unknown condition at essentially the same time? It seems unlikely that the phenomena being
described was new. The categorization simply gave a name to something that was in existence.
Historical diagnosis is a popular activity online, with compelling cases made for the
neurodivergence of Albert Einstein, Thomas Jefferson, Michelangelo, and countless other
important scientists, philosophers, and artists. Many historians point to the “Wild Boy of
Aveyron” as one of the earliest well-documented cases of likely autism (Donvan & Zucker,
2016; Silberman, 2015). Before the label of autism existed, “autistic” people were considered
mad, hysterical, cursed, schizophrenic, and, at various points in history and geography, “holy
fools” whose eccentricities were recognized as extreme devotion to a God that could speak
through them (Challis & Dewey, 1974; Donvan & Zucker, 2016).
Foucault’s Madness and Civilization (1961/2003) identifies a new episteme related to
mental illness emerging early in the “Age of Enlightenment.” The mid-17th Century brought
about a new means of controlling the mentally ill, that Foucault dubbed “the Great
Confinement.” Western European nations were largely Christian at the time, and believed the
roots of mental illness and distress lay in sin and moral failure. Asylums and workhouses were
the response of the state to “those whose lives affronted bourgeois rationality - beggars, petty
criminals, layabouts, prostitutes - became liable to sequestration higgledy-piggledy with the sick
and the old, the lame and lunatic” (Porter, 1990, p. 47). The feeble-minded, mad, and the
impoverished were unceremoniously lumped together and locked away, removing the blight
from polite society and institutionalizing practices that would define the value of a human being
based on their financial productivity.

70

The massing of individuals in asylums created pools of potential labor that allowed
“employers, as sponsors... to benefit in the form of profits” (Zmolek, 2019, p. 72). With this
realization, the systems used for the warehousing of humans required refinement. The men in
charge of running the asylums and poorhouses of Europe and the United States began to cluster
their new wards based on their strengths and challenges. More accurately, the individuals who
were capable of labor were identified and put to work. The masses were subdivided based on
their ability to generate profits for their keepers. Grossman (2006) argues that this practice was
instrumental in the birth of Capitalism, with workhouses serving simultaneously as places of
education in the importance of work, as a deterrent to unemployment in society at large, and as
centers of profit and labor for a burgeoning owner class. Those that were seen as uneducable or
without the capacity to work were sent to more restrictive asylums.
Categories and classifications only arise as they become meaningful. Before the Great
Confinement, there was no meaningful reason to categorize and systematize the differences
between types of aberrant and atypical ways of being. The first separations were based on broad
categories of incompetence, which have continually been refined to reflect advances in scientific
knowledge and the introduction of new constructs and philosophies and political pressures. By
the late 1880s Nietzsche would write that “God is dead,” and science and reason had effectively
broken the church’s monopoly on truth. This gave space for narratives of mental illness as
something other than the cost of living in a sinful world.
Sigmund Freud opened his first clinic to treat mental illness in Vienna in 1886. Freud was
a neurologist interested in “hysteria,” a term that would come to be replaced by anxiety and
depression by the end of the 20th century. His theory of psychoanalysis became the dominant
force in psychology through the 1950s, asserting that unconscious processes of the mind were

71

interfering with otherwise healthy individuals. This framework, published in 1895’s Studies in
Hysteria, not only offered an explanation for mental illness but also hope for a cure through talk
therapy.
In 1933, Germany appointed Adolph Hitler as the ruler of their government when his
Nazi Party gained control of the country’s parliament. Nearly immediately “a diagnostic regime”
(Sheffer, 2018) was enacted to count and classify every resident of land occupied by the state.
The Nazi Party followed an ideology of extreme racial nationalism, known as the volkisch
movement. In this ideology the volk, or the people, were a pure and strong population that was
being systematically weakened by outsiders. In July of 1933, the new Nazi government issued
orders to begin sterilizing individuals with disabilities and impairments. A census was taken
door-to-door, identifying individuals of all ages with disabilities and referring them to medical
professionals for examination. Much like the workhouses, this system provided the medical
profession an abundant new pool of patients. As the German government began preparing for the
war that would become the Second World War, these pools of patients again provided a source
of labor to build needed weapons and defenses. Mechanization and industrialization had
radically altered the demands on laborers and the need for soldiers for ever expanding front-lines
required finding as many capable bodies as possible.
Hans Asperger was the director of a ward at the Vienna University Children’s Clinic
where children with psychiatric conditions were evaluated and diagnosed (Czech, 2018).
Individuals with mental illness and disability were subjected to a scrutiny never seen before, as
the Nazi regime sought to build their herrenvolk, or master race. By 1939, the clinic run by
Asperger was one of many participating in a program of systematic euthanasia of children
determined to be irredemable or uneducable (Czech, 2018), including many that would be

72

diagnosed as autistic today. Asperger’s recognition of “educability” in the children he diagnosed
as autistic literally saved those children’s lives. The diagnosis signaled that these children were
worthy of life, because they would potentially be able to contribute to the Reich more than they
take.
There is an argument as to whether Asperger is a hero for recognizing the humanity of his
“little professors” or a monster for erasing the humanity of others. Asperger’s classification arose
from a need to justify the continued existence of a particular group of human children according
to their ability to contribute economically to a society in need of workers. How he felt about his
complicity in genocide has very little consequence on his contribution to our understanding of
autistic people, but the role he had in creating lines of division ought to factor into our
understanding of how we use those same lines today. At best, he was a participant in a system of
mass murder for the sake of “racial-hygiene.” At worst, Asperger was playing God and drawing
his own line for who was worthy of life. Some see Asperger’s relatively homogenous, lower
support need, group as indicative of a personal belief in the unworthiness of some life. That may
be or, as John Elder Robison (2016) notes, it may simply be a product of a terribly efficient
system:
By 1942, much of the bottom of the Austrian IQ range had been systematically
exterminated. Consequently, there were no significant numbers of cognitively impaired
children at treatment clinics in Vienna or anywhere else in the Reich. So when Asperger
described his patients, they were all possessed of average or even exceptional
Intelligence” (p. 5)
The decision to include the Third Reich history of autism in this section was not made
lightly. There is an idea in modern culture, Godwin’s law, that invoking the Nazis in an
argument is a tactic of the desperate. This tactic is meant to pin the opponent into a corner and
force a forfeit in place of defending the indefensible. But as Edith Sheffer said in her history,

73

“diagnoses reflect a culture’s values, concerns, and hopes” (2018, p. 3). It is crucial today, as we
continue to use the labels and categories that were created in this framework, to ensure the
values, concerns, and hopes reflected by the diagnosis today are something other than where they
began.
It is tempting to ignore this history, to point out that the diagnosis as we know it was
created by Leo Kanner after he came to the United States, based on cases of American children
with American “values, concerns, and hopes.” While their efforts would never compare to the
industrial genocide of the Third Reich, American medical professionals were leaders in eugenics
(Kliewer & Drake, 1998; Pernick, 1997). In 1927, the Supreme Court issued an opinion
upholding forced sterilization of the intellectually disabled, stating, “three generations of
imbeciles are enough” (Buck v. Bell, 1927, para. 4).
Hundreds of thousands of “undesirables” have been sterilized or been forced into
abortions in American hospitals, prisons, and mental institutions (Gutiérrez & Fuentes, 2009;
Rutecki, 2011). In Puerto Rico, more than ⅓ of women were sterilized between the 1930s and
the late 1970s, the practice becoming common enough it was known on the island as La
Operacion (Finoh, 2020; Safford, 1984). In the southern United States, forced sterilizations were
known as a “Mississippi appendectomy” (Sacks, 2019) and, though exact numbers are
impossible to find, the overwhelming majority of these assaults were carried out against Black
women (Finoh, 2020). Native American women have also been a frequent target of the genocidal
practice, with studies showing 25% of all indigenous women were sterilized as late as the 1970s
(Lawrence, 2000). More recently, reports have emerged of dozens of women sterilized without
their knowledge or consent while being held by US authorities at immigration detention centers
(Finoh, 2020).

74

Leo Kanner came to the United States in 1924, fleeing antisemitic persecution. He was a
prolific writer, and within a few years his work was noticed by Adolf Meyer. Meyer recruited
Kanner to join the staff of his clinic at Johns Hopkins University in 1930. The University was
widely recognized as the preeminent medical education and research institution in the US
(Flexner, Ludmerer, 2011) and received immense support from prominent philanthropists and
civic leaders. The clinic, run by Meyer, was named for Henry Phipps, a childhood friend and
later business partner of Andrew Carnegie. Phipps donated $1.5 million to establish the clinic in
1913, as part of a larger effort by America's first generation of mega-industrialists to improve
living conditions, and increase profits, that began with Carnegie’s publication of the Gospel of
Wealth of 1899 (Barkan, 2013; Reich, 2018). These world-making efforts of the early 20th
century recreated the American healthcare and education systems (Duffy, 2011; Reich, 2018).
The influence of these men is unavoidable in modern culture including our treatment of
neurodivergent members of society, which will be explored further in the coming chapters.
Working under Adolf Meyer, Kanner established the first child psychiatry unit in the
United States. It was this clinic that attracted the attention of the parents of Donald T., a young
Mississippi boy who would become the first case of autism diagnosed and written up by Kanner
(Kanner, 1943; Zucker & Donvan, 2016). Donald was institutionalized at age three. Doctors told
his family to grieve the loss as if her son had died and move on. They ignored the professionals'
recommendation to move on and visited when they could. Within a year, Donald’s parents had
second thoughts about the decision and brought their son home. They’d eventually write and
send a 33 page letter to Kanner’s new clinic, detailing their son’s challenges and peculiarities but
also his intelligence and interests. It painted a picture of a child who didn’t fit existing cultural
narratives. He was clearly atypical and would need support to live independently but he did not

75

need to be locked away (Kanner, 1943; Zucker & Donvan, 2016).
For Kanner, Donald T. and his parents presented a breach in the canonical. How was it
that these children labeled as “feeble-minded or schizophrenic...idiots or imbeciles” (Kanner,
1943, p. 242) were in fact something else? The Pragmatist William James (1907) said,
True ideas would never have been singled out as such, would never have acquired a class
name, least of all a name suggesting value, unless they had been useful from the outset in
this way.. truth as something essentially bound up with the way in which one moment in
our experience may lead us towards other moments in which it will be worthwhile to
have been led to (p. 204).
In the case of Donald T, it was the parents who had initially “singled out” the idea that made
“useful” the label autism. Parents have remained primary drivers of change related to autism, a
label that has been in a constant state of evolution since it first appeared.
Silberman’s (2015) NeuroTribes and Zucker and Donvan’s (2016) In a Different Key,
document the immense work of parents both in and out of science and medical communities to
gain recognition, services, and eventually acceptance for their neurodivergent children. It was
parents’ “singling out” of “canonical breaches” that led to autism being listed in the first edition
of the DSM in 1952 as a subtype of childhood schizophrenia. It was parents’ action that led to a
reclassification of autism as a developmental disorder in the DSM-III (1980) and three
subsequent major revisions of the official definition since (Herman, 2019).
The most recent estimates place the prevalence of Autism Spectrum Disorder in the US at
1 in 59 children (Baio, et al., 2018). This relatively large increase in diagnoses over 30 years has
combined with a still unclear and unknown etiology to create a fertile ground for the
proliferation of questionable or outright disproven theories. The 1960s brought psychologist
Bruno Bettelheim’s (1967) theory of “refrigerator mothers.” The 1980s brought us the film Rain
Man and the public image of the autistic savant. The 1990s came to a close with the publication

76

of the later-retracted Lancet study claiming a link between ASD and MMR vaccines (Wakefield,
et al, 1998). The 2000s saw the rise of the monolithic parent-led Autism Speaks and popular
notions of an “autism epidemic.” In the last decade, the voices of parents and “experts” have
been joined by neurodivergent voices as drivers of change.
We are seeing today the first generation of adults who have been through a service
system that is comparable to the one we have today. Young adults who are aging out of school
based services now were born in the 21st century. They came of age in a world that knew what
autism is and, by the time they were old enough to enroll in school, the laws had been passed that
would ensure access and provide needed support and accommodations. As a society, we have
invested billions of dollars in understanding autism and building a service system to ensure the
democratic ideals of equal access to opportunity and a meaningful life for all. Frustratingly, this
increased attention has not translated into improved outcomes for autistic adults.
The lingering difficulties with services that will be explored further in this dissertation
point to a potential “cultural mismatch” (Fesmire, 2019; Stephens, Townsend, Markus, &
Phillips, 2012) between neurodivergent and neurotypical cultures. This incongruence in priorities
and modes of engagement, and a recalcitrant default to neurotypicality, has led to a critique of
autism research and services as colonial practice (Douglas, 2013; Grinker, 2020; May, 2018;
Savarese, 2013).
The sociologist Damian Milton (2012) has referred to a misalignment of neurodivergent
and neurotypical cultures as the “double-empathy problem.” He argues that it is this mismatch
that lies at the heart of poor outcomes and marginalization in the autistic community. Milton
points out, “it is true that autistic people often lack insight about NT perceptions and culture, yet
it is equally the case that NT people lack insight into the minds and culture of ‘autistic people’”

77

(p. 886). Milton, who is autistic and the parent of an autistic child, points out that the traditional
framing of autism creates an inherent focus on deficits, leading to stigma, mental health
challenges, internalized oppression, corrective interventions, and a research agenda that excludes
autistic voices. Quoting Milton again, “far from owning the means of mental production
about one’s own culture, the ‘autistic individual’ becomes the 'product' of the industry, the
'thing' that is 'intervened' with” (p. 887).
An example of a similar mismatch can be found in efforts to “educate” indigenous
Alaskans by Russian and US colonists. Alaska was “discovered” by a Russian expedition in
1741, in the same way that autism was discovered by Kanner in 1943. Autism and Alaska both
existed before these discoveries made their existence a “truth” in the Pragmatist sense. The
earliest White settlers in Alaska were Russians seeking to capitalize on the abundant natural
resources found in the ocean. Fishing, whaling, and the fur trade were driving forces of
expansion, with coastal settlements serving the passing ships.
As those economic interests expanded, so did the desire of the colonists to control the
Native populations, to indoctrinate them into European culture through institutionalization and
educational practices that did not respect their traditions, priorities, or ways of being and
meaning making. Alaska Native children were removed from their homes and villages,
prohibited from speaking their traditional languages, and forced to observe Christian religious
traditions and practices. Traditional indigenous ways of knowing were discounted and ignored,
“studying rivers, weather, snowpack, roots, animals, oral history, etc. were no longer seen as
objects of valuable knowledge (even though they are present academic studies)” (North, 2021, p.
38). BB North, an educational theorist, has noted these objects of academic derision only a few
decades ago are now key concepts in the natural sciences. North points to this cultural mismatch

78

as the root of many of the “academic achievement, civic engagement, and opportunity gaps” (p.
43) measured in indigenous students today.
It is my contention, based on my own life experience and my interactions and
relationships with neurodivergent people, that a cultural mismatch plays a similar role in the
achievement and opportunity gaps faced by autistic adults. Participants in each of the studies
represented in this project shared stories of a culture that rewards conformity and punishes
divergence. Community is described as treacherous terrain that takes an emotional and physical
toll on neurodivergent individuals and those who love them. In the coming chapters, this history
of autism as a cultural construct can inform conclusions drawn by readers from the stories of
participants. I expect readers to question interpretations of events that are told as stories in this
dissertation. Our narratives are hard to overcome, but moments of breach are potential moments
of change. Autistic adults are clear in their demand for change. I hope that readers will embrace
the call of the community and in the moments of conflict reflect on their foundations and whose
meaning is being prioritized.

79

Chapter 4: Miracles and Millionaires
“When care is not infrastructure, when we are not oriented around our interdependence, we
generate ableism and eugenics? What will future archaeologists of our care make of us? Let’s
unlearn the individualism myths and politics of resentment ingrained in us, center care, and
celebrate our interdependence...We are dying for you to widen your lens.” - Ryan Boren,
#ActuallyAutistic retired tech worker, Boren.blog, 2021

One collective narrative session in particular became “a chance to dream” as mothers
were asked to describe activities that had been “meaningful, fulfilling, or engaging” for their
children. Each session begins with updates from the mothers on their lives since the last meeting
before shifting to the topics presented by the research team. As we sat around a long conference
table, the mothers shared their stories and updates. It was during an update that the first of two
moments occurred that revealed to me a larger truth about autism services.
Marie is the mother of Jake, a non-speaking autistic young man who communicates by
typing. Jake is intelligent, thoughtful, and an excellent writer, despite motor difficulties that often
leave him “nearly catatonic” according to his mother. With great effort, Jake uses a standard
computer keyboard to type out his interactions with the world. His typing has opened his social
world by allowing him to find community in online spaces, where his typing is not atypical and
more time is afforded by conversation partners.
When Jake was two years old, Marie left her small business to dedicate her time and
energy to finding the services and supports that would help him thrive. She found therapies,
volunteered at schools, joined the boards of organizations, and fought to ensure that Jake, the
sixth of seven children in the family, would have the same opportunities as his siblings. Marie is
relentlessly positive. Even when telling stories of painful failures of service systems, she seems
to find light. In her update at this meeting, she shared a story of her son succeeding, completing a

80

college level American history course during his final year of high school, which she described
as “a beautiful, beautiful miracle.”
Marie described a state college program that offered online classes free of charge for high
school students that was a match for Jake’s learning style. There were self-paced options “fully
animated, that um that have the sound and the transcript together in little bite-size pieces” and
optional in-person online classes that were a less stigmatizing environment. Jake stims
frequently, he will rock, hum, or vocalize. These “behaviors” can make a general education
classroom a difficult environment. Additionally, as a non-speaking typist, communication can
come slowly for Jake, as he works against motor planning difficulties to speak one letter at a
time. Typing in a classroom environment leaves him reliant on an interpreter, usually an adult,
who can sit with him and relay his words. The online space offered by this college program,
which would become the norm in 2020, was different, “we just turn on the mute button and so he
is able to fully participate in the class... the neurotypical kids are so shy that they never um
unmute themselves they just type, so it totally equalizes the playing field.”
These seemingly simple accommodations allowed Jake to be able to concentrate on the
material in course instead of dedicating his energy and effort to reducing the “behaviors” that
were not acceptable in neurotypical spaces. Marie said that Jake:
absolutely loved American history, and had an excellent text book and uh he was using it
on himself all the time. He thought it was great fun (laughs). You know, “let’s use some
operant conditioning” because he knew, you know, a little negative reinforcement. So he
was having fun using the terms and so um, he wanted to take the exam. But you know,
um, up until this last year it has never been allowed because they don't support typing and
so um it's been very clear in the rules.
Typing can be a controversial subject in academic and medical circles. A group of
research studies on “facilitated communication” in the 1990s rejected the reliability of the
method completely (Biklen, D., & Cardinal, 1997; Mostert, 2001). These studies were a reaction

81

to a specific method of hand-over-hand facilitation that some researchers believed was a hoax
(Jacobson, Mulick, & Schwartz, 1995) and concerns were amplified after incidents in which
facilitated communication was used to allege abuse that could not be otherwise proven (Botash,
et al., 1994; Jacobson, Mulick, & Schwartz, 1995; Siegel, 1995). The critiques have effectively
served as a blanket condemnation of alternative modes of communication and provide a
seemingly insurmountable hill for users of non-traditional communication technologies (Cevik,
2019; Foster, 2019).
As new technology increased the options for augmented communication, the practice of
typing for autistic people became more common. By the 2010s, the critics of facilitated
communication returned to autism and speech journals, generally not expanding their criticisms
beyond those they’d levied in the preceding decades (Mostert, 2010; Lilienfeld, Marshall, Todd,
& Shane, 2014; Tostanoski, Lang, Raulston, Carnett, & Davis, 2014). These early criticisms may
have been legitimate, but they may have been witnessed at an early stage in the development of
augmentative and alternative communication (AAC).
Today many autistic people type to communicate. Advances in technology have allowed
AAC devices to be accessible, affordable, and customizable enough to be useful (Donato,
Spencer, & Arthur-Kelly, 2018; Holyfield, Drager, Kremkow, & Light, 2017; Logan, Iacono, &
Trembath, 2017; Sievers, Trembath, & Westerveld, 2018). The critiques of facilitated
communication still cast a long shadow for typists like Jake, serving effectively as a blanket
condemnation of alternative modes of communication that can be used to support the type of rule
that would prevent Jake from taking the American history test.
With this in mind, Marie and Jake decided to take a risk, and sign up for the test which
would be proctored at his local high school. “My husband just always said, ‘what the heck, just

82

sign him up for it and see what happens’” and so they did. The high school, where Marie and her
other children were well known, worked with Jake to request accommodations for the test from
the college.
The poor school kept trying to get letters for him to get accommodations and each time
[the college] just didn't understand what this was, even though they sent the IEP and all
of the things he needs. And they say, ‘well he can have the computer, but he can't have
the typing aid’ or ‘he can have a scribe, but can't have a computer’ and we thought it was
just hopeless, but the vice-principal told us we can go ahead and try and come, and we
did. But then Jake threw a wrench in because he said he wouldn't go without me. And
that was not good ... I said you know, you realize that we're gonna go there and they are
gonna turn us away because you know you have to go with your school aide and he said
no.
As irrelevant as the rules may have felt to Marie in this situation, she understood that a
prohibition on a mother aiding her son during a test was reasonable. Jake was unwilling to budge
on his request.
So we weren't gonna ask permission for this cause we know we knew they'd just say no
so we thought we'd just show up and get prepared to turn around and leave, so we did,
but you know we prayed really really hard because May is the month of the rosary, so
prayed a whole rosary that somehow some miracle would happen. And it did because
when we got there the vice-principal of course was aghast. After all his hard work,
enabling us to even take the exam with supported typing and a computer...and I show up.
You should have seen his face and I felt just total sympathy and I was totally ready just to
leave because he worked so hard on this... But you know, I bet you anything that you
know the blessed merciful Jesus sent Mr. C.
Mr C., the superintendent of instruction at the school, just happened to be passing by as the
situation was unfolding and provided a potential solution.
When he saw the situation he said, ‘oh I'll proctor Jake.’ He was an angel and just
pretended he had all the time in the world and I know he didn't. He just sat there with a
big smile, a calm smile and he proctored Jake until they ran around and found some aid to
replace him, but it was really so, it was just a gift from God, so Jake got to do this so it
was a big miracle.
As Marie shared her experience, I wrote a single word in my notes with a question mark,
“miracle?” The outcome of this story is unlikely, requiring people and events to align in ways

83

that defy simple explanation. Marie tells the story as a series of barriers, each overcome against
expectations, which add up to an achievement that seems nearly impossible. The outcome is
atypical in their experience and better explained as a miracle than the product of a culture
changed by Jake and Marie. When I listened, I heard a story that shows the incredible work that
Jake and Marie have put into building and maintaining a community of support. The vice
principal had known the family for years. Marie volunteered at the school and stayed involved in
parent organizations. Mr. C knew Jake well, he had volunteered previously to work one-on-one
with Jake in an English class for a semester. The other teachers at the school were resistant to
including Jake, so Mr. C stood up. These two educators saw Jake as Jake, as a member of their
community, and as worthy of taking the test in spite of a rule which would have left him out. By
recognizing this rule as a barrier that was culturally constructed, Mr. C was able to see that it
could be deconstructed.
This chapter should not be read as a denigration of Faith or the belief in miracles. I agree
that these moments are miraculous. They are beyond expectation and seem not to fit with the
world as we know it. In moments of conflict between neurotypical and neurodivergent culture,
the priorities and meaning of autistic individuals are rarely considered. Autistic people and their
families have come to expect barriers. Successes feel like accidents, or miracles. We are often
more comfortable as bystanders than as heroes in our own stories, especially when it’s a story of
success. Perhaps in the story of the American history test it is easier from the outside to see the
agency of Jake and Marie in shaping not only their story but their communities' values. When
Mr. C said he would help, it was a breach for Marie. A breach of the expected, the canonical, the
truth. Her experience up to that point had given her the belief that she should not expect the

84

system to work for Jake. Even in situations where a policy seemed to be obviously unfair and
disabling, Marie expected stigma to win over compassion.
Many people, myself included, likely would have given up in the face of these obstacles
in our own path. Marie and Jake persisted. For them, there really is not any other option. The
outside world may not be designed for Jake, but the two have never lost sight of the truth that the
world can change. The systems of care that exist were built by people, the rules written by
people and are enforced by people. None are set in stone. Change is not expected, but it is
possible, and that can be enough to keep showing up and trying.
Goffman (1963) defined stigma as an attribute that is socially defined and takes an
individual “from a whole and usual person to a tainted, discounted one” (p. 3). Autistic
individuals are often presented as something less than human (Biklen, & Kliewer, 2006), and in
need of a neurotypical savior. Autism advocate and author Shannon Des Roches Rosa (2016)
said that thought leaders “need to stop treating autism and disability as rare and tragic
exceptions, instead of commonplace” (2016, para. 7). There are serious and long lasting
consequences for the people who face stigma around a mental health or behavioral condition
such as autism. The deleterious effects include damage to self-esteem, poor academic outcomes,
and health impacts (Major & O’Brien, 2005), which are well documented areas of concern
amongst the autistic adults (Levy & Perry, 2011).
Despite the enormous impact of stigma on the lives of marginalized people, research
indicates that it can be reduced through interaction. Even television shows can play an important
role in the reduction or perpetuation of stigma. We create parasocial relationships, or real
psychological bonds, with the people that we watch on TV or listen to on the radio. These
relationships can feel real and can influence our beliefs and opinions just like relationships in the

85

real world. One study found that viewers of the sitcom Monk, about a detective with obsessive
compulsive disorder (OCD), exhibited lower stereotypes about the disorder and a greater
willingness to disclose mental health treatment in their own life (Hoffner & Cohen, 2015).
Similarly, frequency of watching Will & Grace correlated with lower levels of homophobia
(Schiappa, Gregg, & Hewes, 2006). Interestingly, the effects in both cases were more
pronounced when individuals did not have exposure to the subject matter in their daily lives.
If simply seeing a character on television can increase acceptance and understanding, it is
hard to overstate the impact that Jake and Marie have had on their community. The rules of the
test were meant to enforce impartiality, equity, and fairness, ensuring no person has an
unreasonable advantage. Jake’s experience hadn’t been considered when these rules were created
and, in that moment, the “truth” in those rules crumbled. Like the Pragmatist’s concept of truth,
Bruner’s cultural narratives provide a structure for life and for action. Narrative “specializes in
the forging of links between the exceptional and the ordinary“ (Bruner, 1990, p. 47) and, for the
actors in this story, the event, a high school student taking a final exam, was surely exceptional.
For the educators there that day, the presence of Marie rather than an aide caused a
breach. The truth was that this was against the rules and Jake should have been sent home. That
truth did not serve this community, it was no longer relevant to them. Following the rule would
cause Jake to be excluded, a consequence that did not feel just in this circumstance. This breach
led the school staff to reevaluate, to remake the truth, to say that it is reasonable to break the
rules. Given the conditions on the ground, to follow the rules, though perhaps expected, could be
perceived as ableist and unethical. As James (1907) said, “truth is made, just as health, wealth,
and strength are made, in the course of experience” (p. 218).

86

From my perspective as a listener, Marie’s framing of this event as a miracle was the
puzzle that stood out. I had gotten to know Marie and Jake through her stories in collective
narrative meetings. I knew the dedication and work that they both put into reaching their goals
and marveled at the web of support that they had built. The success from my perspective made
sense. I could understand Jake’s anxiety about taking the test and I could understand Marie’s
worry that an irrelevant rule could block Jake’s opportunity to take the test. I could also relate to
the actions of the two educators who saw a member of their community who just wanted to take
a test.
Playing the Lotto
As I reflected on this moment, I looked back at my notes from earlier meetings of the
Collective Narrative group. In one, Megan, the mother of Frank, described difficulty finding
space in the community where her son could just be himself. Frank is non-speaking and has high
support needs. For Megan, a lack of understanding of autism led to uncomfortable situations in
the community.
There's still a little side eye here and there and everyone has a comment about what they
feel like would-, would cure him tomorrow. And so uh, you get a little discouraged taking
him places without thinking of uh worst case scenario meltdown, his hitting, kicking,
punching, screaming, safety plan, emergency exit situation.
As Frank approached adulthood, Megan began to research the opportunities that would exist for
him. She began to reach out to programs and service providers and learned that the majority of
existing programs would not be suitable for Frank’s needs. Like many parents before her, faced
with a gap, Megan began the process of creating a new program.
“It is a struggle. It is a battle. It is definitely a journey, but I feel like at the rate we're
going we can definitely get it done.” She took courses that would allow her to become a licensed
service provider, but soon found herself overwhelmed in a web of licensure and bureaucratic red
tape. She wanted to create a community space for autistic children and adolescents to be

87

themselves, a family entertainment center, with “games, sensory rooms, the whole nine.” In her
vision of this space it served a dual purpose. First, it would provide a space for neurodivergent
people and their families to relax, to engage in the ways that are meaningful to them free from
the judgement and constraint of neurotypical culture. Second, Megan hoped that the space would
allow neurotypical people to change their views of autism, by creating opportunities for people
to interact on an even ground.
The proposed business didn’t fit neatly into existing categories and Megan struggled to
find funding. She approached government and non-profit funders of autism services seeking
grant opportunities and connections. She quickly learned, “they have to call it child care... to get
that type of funding, but [it] wouldn't be considered child care. It's entertainment to them,” and
entertainment is not funded. Despite the meaning to neurodivergent people and potential to
contribute to better mental health outcomes, funding agencies have, to date, offered little to no
support for leisure.
As Megan described the effects of exclusion, she offered her solution for the lack of
funding:
I play the lotto everyday. I’ve got three tickets in here [holding up her purse] right now.
Mega, Super, Power, I just want to win the lotto so bad so that I can just give our- our
world all these things that we need for these children like these adult residential facilities,
like FECs [Family Entertainment Centers] for disabiled children. So they have a place for
themselves as well.
During Collective Narrative meetings I do not take a lot of notes. Meetings are recorded, so I
don’t generally feel the need to write more than a couple of words to serve as reminders for
reflection or to mark moments that felt significant. Megan’s mention of the lottery, at first
registered for me as a figure of speech, a hyperbolic nod to the odds being stacked against her.
When she held up her purse and later showed the three lottery tickets inside, I realized my initial

88

impression was wrong. This was not hyperbole, it was reality. In my notes I wrote, “lottery
puzzle - the relative smallness of what is consequential in juxtaposition.” These mothers were
not seeking extravagant and unnecessary services or support, but again and again they saw these
envisioned services as impossible in the world as it is, at least without the intervention of a
miracle or a millionaire.
The priorities of the mothers in this study have shifted as their children have become
adults. They seem less concerned with normalizing and medical interventions and more
concerned with whether or not their children are living satisfying lives. Ella shared that as her
daughter Maya approached her final year of high school, “I realized that her adulthood has to be
on her terms...this is not going to be about you, not now, not ever. This has got to be about her
because this is her thing.” The relevance of many autism services fade with this realization. For
example, unstructured hanging out or activity based groups replace structured “social skills”
groups, as authentic connection becomes more valued than the ability to sit still or maintain eye
contact.
Discussion
For these mothers the truth is simple. Our systems of care as they are today, are not going
to provide the services and support that autistic people need. It is more reasonable to place your
hope in the lottery or an act of God than the systems that we have designed to provide resources.
My notes from that night continue, “we shouldn’t need miracles or a winning Powerball ticket to
take care of each other,” yet the experience of neurodivergent adults has shown them that we do.
At the outset of these projects, I was not under the impression that services for autistic adults
were adequate. I expected to see long waitlists and interventions that were misaligned with the
priorities of autistic adults. I was expecting gaps, and hoping to find the best ways to fill them.

89

An entire book could be written on the resilience and compassion of each of the women
who shared their stories with me. I have immense gratitude for their willingness to share, and
don’t take lightly the duty to honor their experience. Each of the mothers brought to this study a
unique perspective, an experience being in the world with their autistic children. Their
experiences point to a deeper trouble than I had initially expected.
I was struck by the lack of support offered to these mothers and their children. I had
hoped that we would hear stories of spaces where the system is working as it should. As data
from the projects was analyzed and themes emerged, we began to build collections of stories. I
poured through the data, reading every interview, re-listening to each collective narrative
session. I gathered every story related to finding, receiving, and wishing for services across the
lifespan. The stories that I have chosen to share are not taken from the extremes. In fact, these
stories are narratives of successful experiences. Only by unpacking those narratives, can we
begin to understand the magnitude of the barriers endured by this community.
The mothers in the Collective Narrative group are in many ways fighting the same battle
that Donald T.’s parents were fighting when they sent a letter to Leo Kanner: to find a place
where their kids can be safe and live a fulfilling life. The community center that Megan planned
to open would have been a great resource for her son and other neurodivergent people. It would
have provided a space unlike anything that currently exists in our community; a space where
neurotypicality is not placed on a pedestal, where the pressure to mask or camouflage is reduced
and the risks to personal safety are reduced. While the center doesn’t neatly fit into existing
categories, it would not be difficult to build a case using peer-reviewed research to argue for
potential of spaces like this to ameliorate distress and feelings of isolation in the autistic
community. However, in Megan’s experience, the potential of the center was irrelevant to the

90

agencies and foundations that provide grants and funding to serve the autistic community. Megan
did the work of putting together a plan, completing trainings, and gaining certifications. She was
willing to dedicate her time and resources, but she could not do it alone. Her search for that help
in the systems of care that we have created, resulted in dead-ends and closed doors. Her idea, it
seems, was too fun, too frivolous. The systems we have created do not recognize value in leisure.
I will provide a more thorough discussion of the evidence related to leisure, belonging, and
distress in chapter 5. The truth, recognized by participants and widely within the online Autistic
discourse (Bascom, 2012; Boren, 2021; Brown, 2018; Marble, 2018; Somers, 2020), is that
society is willing to pay for services only when the impact can be measured in increasing
productivity or decreasing the future need for spending.
Before I return to the experiences of these mothers in the next chapter, it is important to
turn again to history to examine the cultural forces that maintain the barriers to belonging and
adequate services faced by autistic people today.

91

Interlude: The Culture of Philanthropy
“Those worthy of assistance, except in rare cases, seldom require assistance. The really valuable
men of the race never do, except in cases of accident or sudden change.”
-Andrew Carnegie, The Gospel of Wealth, 1889

“As an autistic person I do stuff over and over again that I truly am sorry for, that I truly
try to change, but that my fucking brain doesn‘t let me change….And no, I‘m not
inventing problems or purposefully misunderstanding. This is something autistic people
specifically get accused of a lot. And we constantly have people demand that we change
things we can‘t change. It‘s not a small issue either. So kindly, stop generalizing. To all
my disabled peeps who can‘t change shit they‘d love to change no matter how hard you
try, who mean their apology every time, who don‘t manipulate, who are undeservedly
accused: I see you. It‘s not your fault. It‘s okay to be disabled. I love you”
- @autstictic, Twitter, 2021

American medicine is regarded by some as the finest in the world. The United States has
been at the forefront of the development of the modern idea of medicine since the early 20th
century. Today, American hospitals and educational institutions are renowned the world over,
offering cutting edge technology, high standards for safety, and a highly trained and competent
body of professionals. For those with access to those top hospitals and institutions it may be true
that American medicine is great. For most Americans, the system is not as satisfying (Liew,
2018), with decreased access for minority and marginalized racial and ethnic groups, individuals
with lower socio-economic status, individuals in rural areas, people with less formal education,
uninsured people, and immigrants (Griffith, Evans, & Bor, 2017; Khubchandani, Shen, Ayturk,
Kiefe, & Santry, 2018; Saadi, Himmelstein, Woolhandler, & Mejia, 2017). While the disparities
measured have become less stark over time, they persist.

92

Mothers in the Collective Narrative present another challenge to the truth of the greatness
of our current systems of care. The answers for these mothers were never found in the system.
That is why Jake’s success felt like a miracle and why Megan has 3 lottery tickets in her wallet.
For Deborah, another mother in the group, it meant attaching her hopes to something more
tangible. Over the course of her participation in the study, Deborah was involved in fundraising
for a supported housing center that would meet the needs of her son. During updates at the
beginning of a meeting, Deborah would frequently provide the latest news on the development of
the project. After one of these updates, as it seemed the project was coming to fruition, another
mother asked, “how are they gonna manage the finances?”
Deborah responded, “They’re lucky that they have some really major real estate
developers that have been on board with their group.” Around the table listeners nodded
knowingly. For Deborah, the real estate developers were the “fairy godmother” that Megan had
described needing in an earlier meeting. Her description of the housing program seemed too
good to be true, until the existence of a wealthy benefactor was revealed.
In this section I provide a historical background for these concerns and explore how these
inequities in access to meaningful services persist. Understanding the conditions from which our
current systems grew can provide insights on the priorities that they emphasize today. The
mismatch in priorities between neurodivergent communities and the medical establishment has
been noted in the academic literature (Clark & Adams, 2020; Pellicano, Dinsmore, & Charman,
2014; Roche, Adams, & Clark, 2021) as well as by the self-advocate community, perhaps best
represented by a tweet from John Marble (2018), an autistic former Obama administration
appointee, during the annual International Society of Autism Research (INSAR). “Let’s be blunt.
The priorities of NT people in autism research and autism organizations have fucked up an entire

93

generation of autistic people. That’s shitty science and shitty ethics. It’s time to stop.
#INSAR2018.”
As the 19th century came to close, American society and culture were in a period of
transition. The American Civil War ended in 1865, with the Reconstruction period continuing
until 1877. This was time for a great remaking of the economy, which until that point had been
reliant on the labor of enslaved people. In the early 1800s, 90% of Americans lived and worked
on family farms growing plants and raising animals that would sustain themselves and offered
any excess to their local communities. By 1890, less than half of Americans were farmers.
Industrial technology reduced the human labor necessary to manage crops and the completion of
the Transcontinental Railroad and telegraph in 1869 opened new possibilities for
commercializing agriculture and mining operations, Thomas Edison sold his first commercially
available incandescent electric light bulb in 1879, and in 1880 Bell Telephone systems would
create long-distance services for the first time and change their name to AT&T (Allosso, 2015).
Cities grew across the country as factories and monopolies were built by men like Cornelius
Vanderbilt, John D. Rockefeller, Charwles Schwab, and Andrew Carnegie.
While the industrialists of the era, who would later be known as the robber barons, grew
incredibly wealthy, life was not improving significantly for the average citizen. Changes in the
economy had reconceptualized labor and daily occupation. The urbanization of America
highlighted the unequal distribution of resources. As Andrew Carnegie amassed one of the
largest fortunes in human history the workers in his steel mills were paid only 4% more than the
poverty line despite working 12 hours a day, 7 days a week, with only the 4th of July off each
year (PBS Frontline, n.d.). The inequity led to the period of time coming to be known as the
Gilded Age, referring to the shallow coating of shining gold covering up deep flaws and

94

inequality (Nichols & Unger, 2017; Twain & Warner, 1873). A push to address inequitable
distribution of resources in society gave rise to the American Progressive Era, a time of wide
social reform and activism.
It was in the Progressive Era that the field of occupational therapy would develop
alongside Pragmatist philosophy. Democratic reformers argued for taxing the wealthy to create a
social safety net and institutions that would be available to all. Estate or inheritance taxes were
amongst the first to be implemented by state and federal entities in the US (Metrejean &
Metrejean, 2009). Perhaps in response to the coming taxes, perhaps to influence public opinion
against the need for taxes, or perhaps out of a sense of guilt, the robber barons of the Gilded Age
reinvented themselves as philanthropists, giving away their fortunes to benefit society. In 1889,
Andrew Carnegie published an essay known as The Gospel of Wealth in which he proposed a
framework for his new philanthropy.
The inequality of the Gilded Age was a necessary evil according to Carnegie’s (1889)
philosophy,
We accept and welcome, therefore, as conditions to which we must accommodate
ourselves, great inequality of environment, the concentration of business, industrial and
commercial, in the hands of a few, and the law of competition between these, as being
not only beneficial, but essential for the future progress of the race (p. 3)
This philosophy made no secret of its tax avoidance purposes, even going as far as supporting
the implementation of an estate tax, “to induce the rich man to attend to the administration of
wealth during his life” (p.9). By accumulating profits rather than distributing them to laborers,
“the man of wealth thus becom[es] the mere agent and trustee for his poorer brethren, bringing to
their service his superior wisdom, experience, and ability to administer, doing for them better
than they would or could do for themselves” (p. 12). Rather than let their fortunes be taxed away,

95

many of the robber barons, including Carnegie, would create philanthropic foundations, many of
which continue until this day (Reich, Cordelli, & Bernholz, 2019).
Education was one of the first focuses of the new philanthropist’s attention.
Technological advancement and the development of specialized knowledge required to continue
advancing, required a change to our education system broadly according to the pragmatist John
Dewey (1916):
As civilization advances, the gap between the capacities of the young and the concerns of
adults widens. Learning by direct sharing in the pursuits of grown-ups becomes
increasingly difficult except in the case of the less advanced occupations. Much of what
adults do is so remote in space and in meaning that playful imitation is less and less
adequate to reproduce its spirit. Ability to share effectively in adult activities thus
depends upon a prior training given with this end in view” (p. 9)
John D. Rockefeller, founder of the Standard Oil company and the richest individual in modern
history, gave $1 million through his foundation to create the General Education Board (GEB)
(Davis, 2006). One of John D. Rockefeller’s most famous quotations, though likely apocryphal,
neatly sums up the purpose of his education related philanthropy, “I don’t want a nation of
thinkers. I want a nation of workers” (as quoted in Marrs, 2011; WikiQuote, 2020). While those
words may not have been spoken by Rockefeller, a 1916 report on the work and purpose of the
General Education Board revealed the goals of their push for higher educational standards in the
rural US,
We shall not try to make these people or any of their children into philosophers or men of
learning or of science. We are not to raise up from among them authors, orators, poets, or
men of letters. We shall not search for embryo great artists, painters, musicians. Nor will
we cherish even the humbler ambition to raise up from among them lawyers, doctors,
preachers, politicians, statesmen, of whom we now have ample supply (Gates, 1916, p.
6).
For the GEB, increasing availability of a rigorous and high-quality education was not an
end in itself, it was the means of homogenizing the labor pool and promoting scientific principles

96

that would increase profits. The report described the impact of a social education effort not in
terms of the student experience. Instead, the success of and reason for replicating the effort came
from increased yields and larger profits:
The corn clubs of the General Education Board are demonstrating throughout the South
that from two to five times the present annual yield per acre may be won from the soil.
The same is possible of potatoes. The canning clubs of the same Board are showing
profits of from $100 to $250 per acre for the girls of the family. It is very certain that
scientific farming, conducted as a business, will multiply the annual net profits of the
Southern farmer by at least four. (Gates, p. 9)
Also presented as proof of the success of Rockefeller’s philosophy was a demonstration
farm project. “The cost in money will be limited; the gain in money will be limitless. The farm
demonstrations of scientific agriculture in the South are showing average gains of $10 to $30 per
acre” (p. 13). Farmers, railroads, manufacturers, exporters and importers, and wholesale and
retail merchants are identified as industries who could “each afford to pay the whole expense, as
a commercial investment for profit” (p. 14).
Medical care was another of the great disparities of the day that many foundations turned
their attention to. American medicine at the turn of the century was not well regarded (Anderson,
2015; Starr, 2008).The robber barons and others with the means frequently traveled to Europe,
where medical professions had embraced scientism, for specialized medical care (Devine, 2018;
Starr, 1977). To understand how he could best address the issue, Carnegie, through his
foundation, hired a researcher to review that state of American medical education. The resulting
Flexner Report (1912), would become the framework to rebuild American medicine. The report
blamed a lack of educational standards and the proliferation of non-scientific practitioners of
medicine for the gaps between the US and Europe. Flexner’s recommendations were clearly
influenced by germ theory and recent advancements in European standards of care and treatment
of disease.

97

It had only been 60 years since John Snow had discovered that a London cholera
outbreak was the result of a microorganism in the water at the Broad Street pump. This discovery
set the stage for the work of Louis Pasteur and Robert Lister that made this new knowledge
useful more broadly by creating processes to control these dangerous “germs.” Two years before
Carnegie commissioned the report, a German chemist named Paul Ehrlich received the Nobel
Prize in medicine for his work developing serums to treat diphtheria and his recent discovery that
man-made chemical compounds were a “magic bullet” to treat syphilis and offered promise to
treat other diseases and disorders (Winau, Westphal, & Winau, 2004). Entire categories of
human suffering that were previously unexplainable and untreatable suddenly became something
else entirely. The hope for intervention gave the truth of germ theory new relevance, a better
predictive power, and thus an increased role in the structuring of systems of care:
Scientists aimed not simply to alleviate symptoms but to discover the nature of a disease,
isolate the pathogen, then develop and administer a cure. Private philanthropies planned
to do the same for such social ills as poverty and illiteracy: sponsor research on a
problem, finance the design of a remedy, and pay for implementation” (Barkan, 2013, p.
47).
Upon the release of the report, Carnegie’s foundation worked together with Rockefeller's
GEB to exercise control over the direction of reforms to the system. The exemplar for medical
education, according to Flexner, was Johns Hopkins University and Hospital. Founded in 1876
with a donation from a Baltimore railroad magnate, the university was a scientific research
institution in the image of German universities of the time (Ream, 2007). The focus of
scholarship was on natural sciences, though Charles Sanders Pierce, the originator of
pragmatism, was one of three lecturers on philosophy when the university was established. As a
brief sidenote, Johns Hopkins’ University housed the Phipps Clinic, which was directed by Adolf
Meyer from its founding in 1913 until 1941. It was Meyer, who was a founder of the discipline

98

of occupational therapy, who invited Kanner to join the faculty of the clinic where he would
publish his first description of autism (Herman, n.d.).
The two industrialists offered grants to build and rebuild medical schools and hospitals
willing to meet their new standard. They prioritized hard sciences and measurable change, but
just as they did in educational reform, they decided what constructs were worth measuring. A
GEB report from the era claims, “In our dream, we have limitless resources, and the people yield
themselves with perfect docility to our molding hand” (Gates, 1916, p. 6). In reality, they did not
need limitless resources, those they had accumulated already were more than enough to gain the
desired results. With their grantmaking and influence, nearly half of the medical schools in the
US would close in the wake of the report (Mitka, 2010), including 5 of 7 schools for Black
doctors (Harley, 2006). New standards in education and state accreditation of schools and
hospitals transformed the American medical system, but did little to increase access to care for
all. Innovation led to new technology that increased the cost of delivering care. New hospitals
and schools needed state of the art equipment and medicine, and the industrialists who created
the system were ready to provide the necessary wares refilling the coffers emptied by acts of
supposed generosity.
Bourdieu (1989) would describe the acts of the philanthropist as “world-making” or using
social capital to exercise control of society at large (1989). They shape the world around them by
determining the direction of large-scale social institutions. Joanne Barkan (2013), a modern critic
of this type of foundation, argues, “The mega-foundations use their grants as leverage: they give
money to grantees who agree to adopt the foundations’ pet policies” (2013, p. 49).
The modern American culture of philanthropy is a very important part of the story of
autism today. Parent driven advocacy organizations, run on donations and volunteer labor, were

99

the driving force behind sweeping legislative reforms that would increase autism awareness and
the availability of funding for research and services. In the United States, the 2005 founding of
Autism Speaks was the emergence of a philanthropic monopoly which dominated the
conversation around autism. When Bernie Marcus, the billionaire founder of Home Depot,
learned that frequent absences of an employee were the result of an inability to find services or
help with her autistic son, he thought that he could do something to help. Recounting the story in
2014, he recalled, “that’s when I first saw how autism destroys families” (as quoted in Alliance
for Charitable Reform). Marcus had become involved in philanthropy after he was successful in
marshalling his resources to find effective treatment for another employee with a terminal cancer
diagnosis. That employee lived, and Marcus joined the board of the City of Hope hospital that
saved him.
When Marcus went in search of services for autism, he was amazed to find nothing. So,
in 1991, he created the Marcus Autism Center to provide services and diagnoses to kids in the
Atlanta area. Realizing that more research was needed to improve outcomes, Marcus set about
raising awareness as a means of increasing pressure for government funding of autism research.
Marcus recruited another Fortune 100 CEO to take the lead on his ambitious awareness project,
Autism Speaks (AS). Jim Wright, the CEO and chairman of NBC Universal and GE Capital, was
given $25 million to create the monolithic parent advocacy organization. Zucker and Donvan’s
(2016) history of autism details the corporate merger and takeover tactics that were used by
Autism Speaks to absorb smaller local or regional autism charities into a national body capable
of commanding the attention of the lawmakers and the media.
From the beginning, the focus was a medical model. Marcus and Wright thought autism
was a disease in need of a cure. In keeping with Marcus’s belief that autism “destroys families,”

100

the messaging of Autism Speaks would be characterized by scare tactics and pity. In one 2009
television ad, the narrator says,
I work faster than pediatric aids, cancer, and diabetes combined, And if you’re happily
married, I will make sure that your marriage fails. Your money will fall into my hands,
and I will bankrupt you for my own self-gain. I don’t sleep, so I make sure you don’t
either… I am autism. (as quoted in ASAN, 2009)
A short documentary produced by Autism Speaks that premiered at the Sundance Film Festival
uncritically presents the story of a mother contemplating a muder-suicide involving her autistic
daughter, a story that is shared while the daughter is present (Murray, 2008).
Autism Speaks has been criticized by the autistic community for their position as the
front of the fight to increase the availability of Applied Behavior Analysis (ABA) services for
autistic children. ABA is a behavior control and modification technique first used with autistic
children by Ivar Lovaas in the early 1960s. Guided by principles of Skinner’s operant
conditioning and Pavlovian classical conditioning, ABA practitioners use systematic
“reinforcement” and “punishment” to “extinguish” non-desired behaviors and replace them with
desired ones (Foxx, 2008). A concerted effort to publish ABA research has given behaviorists
the ability to claim to be the most evidence-based intervention for autism, despite the vast
majority of the publications being single-case design with a low level of evidence (Granpeesheh,
Tarbox, & Dixon, 2009). ABA practitioners have positioned themselves well and built political
capital through lobbying and informational efforts and, as a result, are often the only intervention
required to be reimbursed by insurance companies (Autistic Self Advocacy Network (ASAN),
2016).
The intersection of insurance mandates from the government and the financial interests of
ABA practitioners to protect their scope and enshrine their practice in law has undoubtedly
improved access to this service for autistic children. At the same time, these specific insurance

101

mandates mean that for many autistic individuals, services other than ABA are not covered and
must be paid for out of pocket. Many autistic self-advocates have strongly condemned the
methods used in ABA along with the goals of many ABA interventions to make autistic people
seem more “normal” (ASAN, 2016).
Ari Ne’eman, founder and former president of ASAN and a member of President
Obama’s National Council on Disability, contends that “ABA has a predatory approach to
parents, if you don’t work with an ABA provider, your child has no hope” (as quoted in Devita-
Raeburn, 2016, para. 9). Some autistic self-advocates take the criticism of ABA even further,
saying the methods are akin to torture. Julia Bascom (2012), a self-advocate, author, and current
executive director of ASAN, wrote of her experience with the practice:
‘Quiet hands!' I've yet to meet a student who didn't instinctively know to pull back and
put their hands in their lap at this order. Thanks to applied behavior analysis, each student
learned this phrase in preschool at the latest, hands slapped down and held to a table or at
their sides for a count of three until they learned to restrain themselves at the words. The
literal meaning of the words is irrelevant when you're being abused. When I was a little
girl, I was autistic. And when you're autistic, it's not abuse. It's therapy. (p. 178)
An organization of autistic adults (Ask An Autistic, 2021) created a website in 2020 to compile
their community’s perspective on ABA. As of April, 2021, there were more than 100 articles,
blog posts, and other publications from autistic advocates demanding an end to practices
considered by the community to be abusive and traumatizing. Despite these eloquent and
reasoned objections, the voices of non-autistic people are elevated over autistic voices and AS
continues to embrace ABA. Just as the robber baron’s philanthropy created new markets for
their goods, the push for ABA has been capitalized on as private equity firms have been
acquiring ABA service providers in states with generous benefits (Summers, 2021).
In the summer of 2015, Autism Speaks was celebrating its 10th anniversary and created
the hashtag #AutismSpeaks10 on social media for families to share their stories of how AS has

102

changed their lives. Autistic self-advocates began to use the hashtag to challenge AS and point
out the ways the charity has disregarded the voices of autistic people and promoted harmful and
stigmatizing practices and ideas. In one of these tweets, a self-advocate created the new hashtag
#ActuallyAutistic to elevate the voices of individuals on the spectrum (Wilson, 2015). Six years
later, the #ActuallyAutistic hashtag is still in use and has become a valuable tool to amplify the
experiences of folks on the spectrum.
Autism Speaks has used their enormous political capital and 10s of millions of dollars in
direct grant giving to shape the current state of autism services. They have ignored the
perspectives of Autistic adults, instead focusing on developing interventions and supports that fit
their narrow medicalized view of autism and seeking a cure for the condition. By financially
supporting one segment of the service market and lobbying for policies that do the same, they
have constrained the market, and effectively dictate the services available for autistic people to
choose from.
Today, Autism Speaks is still a major force in autism policy but the autistic community
has widely distanced itself from the goals and tactics of the organization (Schultz, 2017). This
pushback and subsequent reduction in fundraising, led the organization to update their mission
statement to remove the focus on “cure” in October 2016. Several news events that month
highlight the impact of AS awareness campaigns. A major motion picture starring Ben Affleck
as an autistic contract killer was released in theaters (O’Connor, 2016), The Atlantic magazine
published an article (Mandavilli, 2016) touting the potential of “shock therapy” to “recover”
autistic children, Netflix announced they would be producing a comedy series about an autistic
teen called Atypical (Wagmeister, 2016), a church promoting ingestion of bleach as a cure for
autism was exposed by ABC 20/20 (Galli, Krieder, & Ross, 2016), Toys’R’Us began holding

103

quiet shopping times for autistic children in the UK (Steig, 2016), Snopes published two fact-
checks of viral autism stories that the children’s cartoon Peppa Pig causes autism (Kasprak,
2016a) and a story promoted by the anti-vaccine movement claiming there is no autism in Amish
communities (Kasprak, 2016b), and in tragic but not entirely unfamiliar incidents two autistic
children were killed by their parents in a murder-suicide in Sydney, Australia (Noble, 2016) and
two others survived being thrown by their father 100 feet from a New Jersey bridge in an
attempted murder-suicide in New Jersey(Brito & DiLorenzo, 2016).
In a Facebook post responding to the change of mission, Amy Sequenzia (2016), a
prominent autistic writer and self-advocate, said:
So, Autism $peaks dropped the ‘cure’ from its mission statement. If you think I will
praise the organization, you don’t know me. The words A$ released look pretty at first
sight, but I have learnt that when it comes to parent-led organizations, we need to pay
attention to every word. “Causes” and “interventions” are still there. If you want to know
the “causes”, the objective is prevention (eugenics) “Intervention” = ABA. It means
change who we are by torturous methods. Besides, where are the apologies for the years
of hate, dismissal, silencing, and marketing against our existence?
The stories shared by mothers in the collective narrative group, highlight the damage of
the constraints placed by funding in the system created and maintained by the philanthropist
class. After this, there will be no long diversions from the stories of participants. I will share the
experiences of mothers related to making do with the system as it is and their attempts to make
good on the unmet ideals of society. My concentration to this point in excavating the cultural
context of autism knowledge and services, is to perhaps allow the reader the relevant details to
interpret the stories ahead. William James (1907) wrote that “experience has a way of boiling
over and making us correct our present formulas” (p. 222). For James, a pragmatist, it was this
“boiling over” of experience that created an opportunity for growth and change, similar to
Bruner’s breach.

104

As discussed previously, we hold fast to our narratives, to our truths. For the most part,
these narratives get us where we need to go, physically and in a more experiential or
transcendental manner. In the realm of autism research and practice, these cultural narratives
drive our action. I believe that most of the professionals in this space are motivated by a desire to
improve the lives of the people they work with. Unfortunately, once we create a narrative it can
be difficult to overwrite it. I include this history to offer an alternative to the notion that our
definitions are objective or that our system is the result of a natural progression of the best or
most truthful ideas.
The history of autism is short and winding. The objective truth of autism as described by
the APA, has undergone six major revisions since its introduction in the DSM-II in 1952. In that
same times span the label we have put on autism has changed three times and the prevalence has
gone from 1 in 2222 in the first epidemiological study of autism in 1966 (Lotter) to 1 in 54 in the
most recent estimates from the CDC (Maenner, et al., 2020). Autistic meaning and truth have
thus far played little role in the development of knowledge about autism, or in the ways that
knowledge is mobilized and the results are evident in the experiences of neurodivergent adults.
The truth is that the meaning of an experience matters, whether that meaning is shared or not,
whether it is 1 in 2222 or 1 in 54.

105

Chapter 5: No Fun in Funding

Services and supports can take many forms over the lives of neurodivergent individuals.
They can be highly complex medical interventions carried out by specialists in specialized
settings or simply a post-it note next to the front door with a reminder to bring keys, wallet, and
phone. The wide-ranging effects of autism on an individual and the heterogeneity of
presentations between individuals have presented a challenge for the development of evidence
based practice (EBP) to serve the population. EBP is an outgrowth of Evidence Based Medicine,
a framework for decision-making in medicine based on the best available research (Sackett,
Rosenberg, Gray, Haynes, & Richardson, 1996).
I’m hesitant to discuss the financial impact of these services on families, it is a topic that
regularly plays into tragedy and burden narratives related to autism. However, costs are an
important real world barrier to adequate care and people rely on third-party payers such as
private insurance or Medicaid to afford necessary services. It is not uncommon for a child to
receive 40 hours of ABA therapy a week, with costs running above $60,000 annually for that
alone (Choi, Knight, Stein, & Coleman, 2020). These third party payers have the power to
exercise control over which services are available with an Evidence Based paywall.
The new Evidence Based framework was an attempt to increase the quality of medical
care by promoting treatments and interventions that research has determined to be the most
effective. New methods in epidemiology and spread of the computer and internet created an
opportunity for healthcare providers to more effectively and efficiently access research studies
relevant to their work (Claridge & Fabian, 2005). As EBP spread, “a common assumption that
evidence was research evidence and, more specifically, research evidence from the quantitative
tradition” took root (Rycroft‐Malone, Seers, Titchen, Harvey, Kitson, & McCormack, 2004). In

106

the world built by industrialists, social programs became investments in communities.
Investments that require a return and measurable outcomes demonstrate that return. For the
funders of intervention services, individual meaning of the construct under measurement is less
important than the statistical properties of the experiment. If a study shows change related to a
construct that the authors and peer reviewers deem important, it becomes evidence, without
consideration for the meaning of the construct to the population of the study.
Today, state funders are working to increase the uptake of EBP in behavioral health
settings, with ⅔ of state mental health directors actively offering financial incentives to service
providers (Stewart, Marcus, Hadley, Hepburn, & Mandell, 2018). While the intent is to ensure
that services and supports are efficacious, reliable, and safe, the effect is the constraining of
opportunities to explore the range of available services. The economic realities of operating a
business lead service providers to concentrate on services that are the most reimbursable
(Halpern, Romaire, Haber, Tangka, Sabatino, & Howard, 2014; Kessel, Erngaard, Flesner,
Andresen, & Hjortdal, 2017).
Joanne Barkan (2013) said, “the crux of the problem with these large foundations is that
they may act with good intentions, but they define ‘good.’” (p. 48). In the case of autism services
in the US, all 50 states and the District of Columbia have passed laws requiring private insurance
companies to cover some autism related services. Though the regulations vary significantly from
state to state, all but three states require coverage of ABA services under the supervision of a
Board Certified Behavior Analyst (BCBA™) (Choi, Knight, Stein, & Coleman, 2020). On their
website, Autism Speaks takes credit for the lobbying efforts that lead to these state regulations,
“At least 200 million people now have health insurance coverage for ABA due to our efforts and
dedicated advocates across the country” (2019, para. 1).

107

While ABA is covered widely, 30.6% of caregivers in one large survey reported their
autistic children receive no services that align with their priorities across the lifespan (Lai &
Weiss, 2017). In another study that looked at autistic adults on waitlists for services, nearly 64%
of individuals had serious unmet service needs (Schott, Nonnemacher, & Shea, 2021). Service
availability begins to decline during adolescence for most autistic people (Laxman, Taylor,
DaWalt, Greenberg, & Mailick, 2019), as does the available published research that would
support Evidence Based Practice.
Finding Loopholes
Today, autistic adults continue to struggle to find services and supports. Far too often, the
services that do exist lack evidence of their effectiveness and are often at odds with the type of
services desired by the community (Anderson, Lupfer, & Shattuck, 2018). Parents in our study
described available services that do not align with the real world concerns of their young adult
children and are based on meeting objectives and goals that are meaningless to their lived-
experience.
The gross underfunding and under-resourcing of meaningful services for autistic adults
was a theme identified by all participants in the study whether they were an autistic adult, a
family member, or a service provider. Autistic adults reported not being able to afford services in
their area, parents and caregivers shared experiences of protracted legal battles to obtain funding
necessary for services, educators worried about the service cliff and talked about trying to find
small grants to fund meaningful transition programming, and founders of non-profit service
providers described the compromises necessary to appease funders.
Frustrations navigating the systems that were ostensibly created to provide resources for
their children were universal. Parents want resources that would help their children live
productive, meaningful, and hopefully happy lives, whether that child is neurodivergent or

108

neurotypical. Meeting these goals for participants often required going outside of established
systems or rules. For families with the financial, social, and time resources, creating a program
that operates outside of the realm of reimbursement concerns is an option.
For those stuck within the system, the hope for adequate services can feel like a dream
beyond reach. Mattingly (1998) has described the work of occupational therapists to maintain
client-centered, meaningful occupation in their interventions in spite of the limitations of the
medical model as “underground practice.” Mothers in this study described their own
underground practice, sharing stories of breaking and bending rules to meet the needs of their
children when the available services would not.
Many autism services are provided in the home by individuals with very little training.
The Behavior Analyst Certification Board, the licensure organization for practitioners of Applied
Behavior Analysis (ABA), requires only a high school diploma, a 40-hours of coursework, and
passing a background check (Leaf, et al., 2017) for Behavior Technicians. While the lack of
training was a frequent target of criticism from the Collective Narrative mothers, several shared
stories of making lemons from lemonade. With ABA the only services available, one mother
took over the planning of intervention sessions during her son’s childhood.
“Remember that book, Your Special Needs Child and, by Greenspan, cover like this
thick, like completely incomprehensible (laughs), like totally dense. I read that thing. I
practically memorized it. I tried everything and nothing worked.” She continued to research
options, finding other frameworks and models to try and she used the behavior therapists to
deliver her interventions.
They kept sending me these cute girls, full of life and energy, adorable! I love them to
pieces. They had no idea how to treat [him]. But just them showing up, forced me to keep
doing it because I knew those girls were going to show up and I had to think of
something, 'cause they didn't have any idea either.

109

Rather than being limited by the scope of ABA, this mother adapted, and with the assistance of
her unwitting accomplices, was able to explore a range of services beyond the paywall of EBP.
Low reimbursement rates for services provide an obstacle for retaining favored service
providers. Family member and service provider participants lamented the low wages and lack of
room for advancement. Dan, the founder of a day program for adults with intellectual and
developmental disabilities, described the constant struggle to keep his best staff members, “they
want more opportunities for growth and they feel like they bottomed out or they've learned all
they can learn but there's not that position.” Low wages add to the press for advancement and the
high turnover in these front line positions (Memon, Salleh, Baharom, 2017; Novack & Dixon,
2019).
There is frustration amongst the mothers that “we keep paying people $11 an hour who
have to take care of someone who has seizures, needs medication four times a day, uses a special
communication device and is prone to violent outbursts, what? That's a pretty complicated job.
That's a very highly skilled person.” The incongruence between skill and pay caused participants
to question the values espoused by the state agencies that provide services.
Families reported supplementing the low wages of caregivers out of their own pocket in
order to retain a provider to whom their child was attached. When agencies are willing to pay
minimum wage, a mother said “we take it and we pay people $20 an hour.” Other participants in
the study described “loopholes” in the reporting of worker hours that allowed them to offer a fair
wage. Arrangements with individual workers allowed mothers the ability to effectively increase
pay by reducing the number of hours actually worked. “I pay them what they deserve to make. In
that way, yeah [he] is really getting half the number of hours that they're paying for, but that's a
lot better than twice as many hours that are useless instead of that.” Another mother utilizing a

110

similar strategy added, “you shouldn't have to lie to get decent people that can stay...I just would
hope...someday we can be more upright and not have to constantly feel as if we're under the
radar trying to make things work.”
“If It's Recreational It's Not Therapeutic”
Jake is a young man who struggled to find a place in traditional services. Like all autistic
people Jake, does not fit neatly into the categories that dictate service availability. He is non-
speaking, has exhibited “challenging behaviors,” and his motor control and planning difficulties
can make even basic tasks difficult. Jake requires support to access many of the opportunities
that his neurotypical peers take for granted. Jake is also quite social and very involved in his
community. He types to talk and is an active participant in his church and several online interest
groups. After discovering an interest in helping other neurodivergent peers in high school, Jake
began working toward a career doing some form of counseling with neurodivergent adults. With
his blend of strengths and challenges, Jake’s autism was not a good fit for many autism services.
Services either were too fast paced and unwilling or unable to accommodate or not engaging
enough to be interesting or worthwhile for Jake.
It was by accident, rather than through the countless autism professionals that were in his
life, that Jake discovered a leisure occupation that his mother called one of his most important
services, piano. Marie, Jake’s mom, recalled learning about an instructor from a carpenter who
was working in their home who has a friend who had left a career doing Applied Behavior
Analysis. Marie and Jake recognized the therapeutic value of this experience and sought funding
through insurance and government mechanisms to cover the costs. Being turned down by both,
Marie took matters into her own hands.
So what we did is, you know, started a music club... where we get a kid to come with
Jake and-, and those were real social interactions cause they were doing something they
enjoyed so it was natural... It's like neurotypical friends. Isn't that amazing, that that

111

would be how you would make friends, by doing something you enjoy together. Exactly
what [State sponsored services] will not fund. Because you cannot do anything that is
fun. Because if it's recreational it's not therapeutic. That's what their funding motto is. It
makes no sense.
Leisure
I spent the summer before beginning this PhD program working as a Level II Fieldwork
student, the occupational therapy equivalent of a residency or internship. I worked in an autism
clinic where the majority of the clients were 3–6-year-olds. This was a rare facility in that it did
not rely purely on hourly billing of services for their budget. Taking advantage of the flexibility,
we created and facilitated a leisure group for autistic adolescents. My participation in those
afternoon sessions with a group of autistic teens embedded in me both the importance of leisure
services and the need for a broad shift in social and funding priorities that recognize the
importance and value of these services.
We hypothesized that engagement in leisure occupations with peers would provide
benefits in several domains. We explicitly designed a program that did not include social skills
training or behavior modification goals. We hoped that, through engagement in occupation,
socialization would naturally increase and with it we might see more confidence and clients who
were happier and more fulfilled. Unfortunately, I can’t say with any authority that we affected
any change in the lives of the participants because this group was not a research project. Despite
scouring the academic literature on leisure and autism, we were unable to find validated methods
to measure this experience, in fact the literature was not helpful in identifying the constructs that
would be important to measure. Broadly speaking, leisure in occupational therapy and
occupational science has been under researched and under theorized. Autism in adulthood is
similarly under studied in the OS/OT world.

112

I saw a short-term organized leisure group change the lives of a small group of autistic
teenagers. They became friends, they experienced new things together, and they discovered new
capabilities and new strengths. The participants succeeded in activities that they had never tried
before or had struggled with previously. In the course of playing games and hanging out with
peers, the facilitators of the group pushed them to continue, to work together, and to break out of
their comfort zones. They began to rewrite the story that they tell themselves about themselves,
and the clinicians and parents who saw the group began to rewrite the stories that we each had
about the participants. It was a powerful experience that has informed my interest in exploring
topics related to leisure in a more systematic fashion.
More than one participant in each study lamented the lack of opportunity for meaningful
social engagements offered by status quo services and supports. Social skills groups were
available to many participants, but were generally identified as overly artificial, irrelevant, or not
age appropriate. Mothers described insurmountable barriers to the services their children desired
and needed, those that would support making authentic and meaningful connections.
As we age, the social requirements to engage in leisure activities with others increase
dramatically. Leisure activity begins as functional and rule-bound play with toys and games in
childhood. In adolescence, unstructured hanging out with peers becomes the dominant method of
leisure engagement. Self-initiated pursuits outside of the confines of the peer group assembled in
schools become the new challenge and main modality of engagement in adulthood (Bauminger,
Shulman, & Agam, 2003). An abundance of pop psychology articles and books on making and
maintaining friendships attest to the difficulty of this paradigm shift, even for neurotypical adults
(Asatryan, 2016; Darrisaw, 2019; Williams, 2012). Adults with autism go through these same
processes with the added barriers of social impairment, restricted interests, and likely sensory

113

differences. Due to the changing requirements for engagement, “as children with autism enter
adolescence, social problems typically worsen” (Locke, shijima, Kasari, & London, 2010, p. 75).
Through engagement in a range of leisure activities, we learn to identify what Bauminger
and colleagues call “social alternatives” (Bauminger, Shulman, & Agam, 2003, p. 501). These
“social alternatives” represent an ability to identify multiple means of entering into a social
interaction and were identified as the most important factor in “lower feelings of loneliness.”
Bauminger’s work shows that, through meaningful engagement in leisure, autistic individuals are
increasingly able to successfully participate in a range of activities independently. Conversely, a
lack of participation in leisure and social activities limits “social alternatives” available,
providing a barrier to future interaction.
Adolescents who engage in leisure activities regularly have reported higher self-esteem
and satisfaction in life than peers who are less involved (Parham & Fazio, 2007, p. 96).
Unfortunately, children with autism participate in a narrower range of leisure activities, less
often, and with a smaller group of people than their neurotypical peers, despite showing equal
interest in a variety of activities (Potvin, Snider, Prelock, Kehayia, & Wood-Dauphinee, 2013).
This early lack of exposure to leisure exploration and participation impacts the development of
leisure skills and future engagement in activity.
Potvin and colleagues (2013) analyzed the leisure participation of autistic children and
found that, beginning in childhood, autistic individuals participate in “significantly fewer” (p.
446) leisure activities and are less likely to engage with peers during the few activities they do
engage in. This is despite the fact that children “enjoyed their recreational participation and
expressed interest for a variety of activities” (p. 445) at the same rates as typically-developing
peers. As a result of this lack of engagement, “children with autism presented higher feelings of

114

emotional loneliness and social loneliness.” (Bauminger, Shulman, & Agam, p. 500).These
feelings of loneliness continue into adolescence (Locke, Ishijima, Kasari, & London, 2010) and
adulthood (Howlin & Moss, 2012). Increasing the opportunity for autistic individuals across the
lifespan to engage in meaningful “doing” with others in person or in non-physically bounded
online communities can alleviate some of the challenges currently faced by this community.
The noted impact of autism on social communication has led to a common cultural
misconception that autistic individuals do not have that capacity for or an interest in social
engagement (Grinker, 2010; Solomon, 2012). Prominent theories of autism continue to reinforce
this notion (Dickerson, Rae, Stribling, Dautenhahn, & Werry, 2005; Jaswal, V. K., & Akhtar,
2019 Moseley, & Sui, 2019), despite a vast and growing body of writing from autistic
individuals that challenges this line of thinking (Bagatell, 2010; Chown, 2014; Moseley, & Sui,
2019). Children, especially those with a disability, are rarely considered as full participants in
their own lives. Lawlor argued that research ought to consider all people as “socially occupied
beings” (2003, p. 430) engaged with others in constructing their own process in an interactive
process with others. The stigma of asociality follows autistic children into adulthood, often
limiting the opportunities to engage in a variety of occupations.
Discussion
As the mothers in this study described their envisioned services and supports, it was
notable that they were not lavish or unrealistic. Parents’ concerns were rooted in the day-to-day
experience of living and solutions offered were based on lived experience. It seemed that the
mothers’ experiences have left them longing for even the most basic meaningful supports and
services. As the Collective Narrative session that began this chapter came to an end, Marie
thanked the research team members in the room, “It’s been so much fun to get a chance to dream
for a couple of hours, to have all of these wonderful things that would be so great for our kids.”

115

Responding to the palpable yearning in Marie’s voice, Dr. Lawlor, who was facilitating
the group, said, “But these...these things sound doable.”
Governments and professional organizations around the world recognize the fundamental
human right to equitable access to opportunities. As such, we have established systems of
services and accommodations for individuals who have physical, mental, cognitive, or certain
sensory impairments that may impact ability to access opportunities. In the United States, we
have recognized Autism as a category of disability that may require supports or accommodations
across the lifespan. Parents in our study indicate that we are failing to live up to the obligations
that come with that recognition in many ways.
A demand for evidence-based services presents a catch-22 for a population that can be
notoriously difficult to measure meaningfully. The mismatch between desired and available
services and supports for this population is surely exacerbated by a severe shortage of validated
tools to measure even common constructs. As noted by Fontil and Petrakos (2015), the lived-
experience of autistic people across the lifespan can provide the background needed to move
toward developing the highest quality measurement and intervention for the population. Simply
put, that research does not exist in the academic literature today (to the extent necessary).
This can create a barrier to lead evaluating what is truly being measured when an
assessment is conducted. There are complex statistical models that can mitigate these distortions,
but there is a generally greater level of uncertainty in measuring a neurodiverse population than a
neurotypical one. Qualitative research and lived experience research, in particular, can begin to
make sense of confounding factors and, in the process, boost the confidence in and the utility of
the underlying measurement. Autistic voices and perspectives are needed across the stages of

116

research and development of responsive measurement tools, evidence-based clinical
interventions, and social and structural accommodations.
Despite the shockingly high rate of comorbid psychiatric conditions found in the autistic
adult population, with anxiety and depression often credited as the top two most prevalent
diagnoses (Crane, Adams, Harper, Welch, & Pellicano, 2018; Howlin, Goode, Hutton, & Rutter,
2004; Levy & Perry, 2011), a recent systematic review of measurement tools for depression
found that there are no validated tools for diagnosing autistic adults and that the tools commonly
in use are not sensitive enough to determine whether certain symptoms should be attributed to
depression or are simply due to autism (Cassidy, Bradley, Bowen, Wigham, & Rodgers, 2018).
In each of these mother’s stories, the onus to make things work, rested fully upon the
neurodivergent individual and their families. Successes are understood to occur in spite of the
system meant to help, rather than because of it or in conjunction with it. Megan said “we’ve been
lucky to get people who can understand. But, I mean, it was after going through 50 people who
didn’t understand or wouldn’t care less, you know.” I listened back to the tape to make sure
those last three words were correct in my transcript. My computer is underlining the word
“wouldn’t,” flagging it as incorrect, suggesting I use “couldn’t” instead. Megan’s words above
are accurate though, and offer a better description of the barrier to community. The reality is that
the people she met along the way could have done better but they wouldn’t.
Those of us in the research and practice fields have an obligation to the clients we seek to
serve to do better. In 1922, Adolph Meyer wrote of occupational therapy, “Our role consists in
giving opportunities rather than prescriptions. There must be opportunities to work, opportunities
to do and to plan and create, and to learn to use material” (p. 84). Occupational scientists with an
interest in neurodivergent populations ought to focus our attention on opportunity. Occupational

117

science philosophically and practically values the individual meaning of experience in a way that
no other discipline can.
I described narratives as a navigation system, a map that tells us how to get from point A
to point B. The mothers’ experience shows us that the routes we offer now are insufficient.
Research and practice has added lanes and a few rest stops to the road but we have left the
neurodivergent community on its own to explore and explain possible new roads. Occupational
science, through our appreciation of meaning and belief in ameliorating effects of occupation, is
positioned to serve alongside marginalized communities to redraw our cultural maps. We can do
the work of cartographers, ensuring the maps we offer to all include the roads that the routes that
they need.

118

Chapter 6: Safe Spaces
In the spring of 2020, when Black Lives Matter rallies were being held around the world,
Dylan wanted to get involved. In high school and college they had been the president of the
Queer Club, but now, back in their hometown at 23 years old, was taking a break from activism.
“I’ve always been very politically left and stuff but not recently...I’m more happy to be on the
sidelines and I help my mom with the LGBTQ club at our tiny conservative town’s high school.”
Dylan lives in a working-class suburb of a large west coast city that was the site of major
demonstrations throughout the spring and summer of 2020.
For Dylan, there wasn’t a question of whether or not to contribute to the Black Lives
Matter movement, it was a question of how. Demonstrations were large and loud and, in the
nearby cities, were regularly met with riot police and tear gas. Dylan expressed some anxiety
about the rallies, and described a conversation with their mother.
‘[D]o you plan on going to the bigger rallies?’ And, I’m like, ‘No, I don't think that's a
good idea’ and she's like ‘I understand... that makes sense. Let's find some smaller ones
that are nearby’
As Dylan told her story, I jotted down a few notes for a follow up question. “Environmental
constraints” joined “overwhelming sensory” as areas to probe further. My training in
occupational therapy keyed me into the sensory features of the potential protest experience.
Crowds are loud, people stand close together, bump into each other, they are also unpredictable,
all potentially disorganizing and physically uncomfortable experiences for an autistic person
with sensory processing differences. My assumption that these concerns were the “barrier” to
participation was upended as Dylan continued.
I know with my C-PTSD and my autism, with all the stuff that was going on, I would
break down and the cops, besides the fact of them not liking people of color, they also
tend to not a big fan of disabled people, so if I broke down and had a meltdown and stuff,
there is like, I’d say, maybe a 50% chance somebody would understand, and maybe

119

somebody wouldn’t have understood and stuff, so that’s the fun thing about dealing with
that.
I have always been interested in the way that culture influences behavior and, as I thought
about the interview later, I was struck by my immediate medicalized assumption. It occurred to
me that my assumption was not untrue, the sensory features of the environment were a concern
for Dylan. Dylan is one of 95% of autistic individuals who experiences sensory processing
differences (Baranek et. al., 2006; Case-Smith, Weaver, & Fristad, 2015; Leekam et al. 2007;
Tomchek & Dunn, 2007; Weitlauf et al., 2017). These sensory differences have become the
domain of occupational therapy, beginning with the development of Sensory Integration Theory
by Dr. A. Jean Ayres. Ayres’ work described the impact of atypical neurological processes
receiving, organizing, and relaying sensory input on the daily lives and emotions and people
(Ayres, 1969; 1972a; 1972b). Our bodies are constantly receiving a barrage of sensory
information, visual, auditory, tactile, olfactory, gustatory, vestibular, and proprioceptive.
Typically unconscious processes organize this input and relay it, only raising input to a
conscious level when it is novel or potentially harmful.
For individuals with sensory processing differences, the unconscious organizational
processes are not effective for reasons that are not fully understood (Little, Dean, Tomchek, &
Dunn, 2018; Schaaf, et al., 2010). A person may be hypersensitive to a stimulus, leading to
neurological and emotional reactions that may seem extreme. Sensory inputs that typically may
be tuned out over time, like the elastic bands in a pair of socks, can become overwhelming and
impossible to ignore. On the other hand, a person can be hyposensitive to a stimulus, meaning a
sensory input may not register and will never be dispatched to the area of the nervous system that
would typically respond. This could mean not hearing someone calling your name or in some
cases not being aware of an injury or illness. These atypical patterns can differ in an individual

120

depending on the sensory system, the specific input, or the context. A person may be
hyperresponsive to the sound of a baby crying but listen to music with the volume set to
maximum, or can be avoidant of touch while seeking out vestibular input.
Ayres' work not only characterized these differences, but also offered methods of using
deliberate sensory inputs to facilitate the development of new sensory patterns and to organize
thoughts and emotions to allow increased engagement in occupation (Ayres, 1972a). As an
occupational therapist trained at the University of Southern California, I was well versed in
sensory integration theory when I began this research project. In my time working as a “behavior
technician” with autistic high school students I saw what happens when sensory preferences are
ignored or treated as problematic behaviors. I watched an occupational therapist work with one
of my students and saw that a bit of time in a hammock swing before PE class made a very
difficult transition go smoothly. At the time, I did not understand why, but I could see this young
man was less anxious and, therefore, less likely to bolt away from the school.
The sensory experience of a large demonstration can be overwhelming for anyone. In the
city near Dylan’s home, Black Lives Matter (BLM) rallies surpassed 60,000 participants in the
early days of June 2020. The city has been host to large scale demonstrations and rallies before
and images of Black Bloc clashes with police are a regular feature of local news. Photos from
BLM rallies in that time frame show liberal and seemingly indiscriminate use of physical force,
chemical agents, and non-lethal munitions by police against protestors. This potentially could
come together to present an environment that is unwelcoming and overwhelming. The push of
the crowd, being touched and bumped into, yelling, chanting, singing, feeling confined, nowhere
to get away from the chaos, sirens, camera flashes, a policeman on a loudspeaker, tear gas,
screaming.

121

The barrier for Dylan was not the sensory environment or the discomfort of a crowd
directly. The sensory experience was a concern but only in relation to increasing the likelihood
of a potential dangerous misunderstanding. The risk is not in physical discomfort from sensory
input or embarrassment at externalized coping strategies, it is instead, the risk of arrest, physical
injury, or death at the hands of the public officials who we collectively have charged with the
duty of maintaining public safety. Dylan was not the only participant to present systemic abuses
by law enforcement as problematic for neurodivergent individuals. Participants in each group
shared stories of negative encounters with law enforcement. Parents told us about restricting
community-based occupations to avoid police. A service provider told us about shifting the focus
of their public transit programs from how to navigate the map and bus route to how to navigate
the neurotypical world to avoid potentially dangerous conflict. Autistic adults shared stories of
their own experiences and interactions with law enforcement.
We did not ask about police interactions. In each case, the stories emerged naturally from
participants. While listening to Dylan’s story, I relied on my own narratives to fill in the blanks
in defining the problem. I knew Dylan experienced sensory processing differences and I knew
large demonstrations can be an overwhelming sensory environment. By putting those together, I
could make sense of the problem and could relate to it. Unfortunately, in doing that, I easily
could have overlooked the actual meaning of the story and the larger more impactful barrier as
experienced by Dylan. For them, the sensory environment was a barrier, it was not however, the
barrier.
In Dylan’s case, the police represent a foundational safety threat that must be resolved
before the sensory environment is considered a relevant concern. In another context, it is very
possible that I would have overlooked the true barrier in this story to focus on the constructs that

122

are measurable targets for intervention. In this chapter, I will share the experiences of other
participants related to police. I am not suggesting that police are the only or even the primary,
barrier to community safety for autistic individuals, but we must recognize the truth of their
experience. For me, Dylan’s story was a moment of breach that caused me to reflect and
reconsider. William James (1907) said, “experience as we know has a way of boiling over and
making us correct our present formulas” (p. 222). I would suggest that the experiences of the
autistic community with regard to police interaction serve as points of reflection for those of us
who hear them.
Structural and Systemic Issues in Policing
Police in some form have been around for as long as recorded history. In 1800 BCE, the
ancient city of Babylon was on the cusp of becoming the largest metropolis in the history of the
world. Rather than relying on military might to maintain order, the Babylonian’s turned to a
civilian guard of uniformed and armed officers (Adamson, 1991). By 1500 BCE, Egypt had a
civilian police force that roamed the boundaries of their territory, keeping order and preventing
trouble from reaching the centers of population (Bauschatz, 2013). The modern concept of
policing evolved along with a new conception of democratic government in the late 18th and
19th centuries.
Today police are, according to Merriam-Webster, “concerned primarily with maintenance
of public order, safety, and health and enforcement of laws.” Society puts great trust in police
officers to “serve and protect” and grants individual officers incredible power to reach these
ends. The obligation that ought to come with that power is to the members of the community the
police serve. Dylan’s experience demonstrates a failure to meet that obligation, a failure that is
unfortunately all too common. Several studies have shown police do not have adequate
knowledge about autism or autistic people (Hepworth, 2017; Chown, 2010; Christiansen,

123

Minich, & Clark, 2021; Copenhaver, Denney, & Rapp, 2020; Gardner, Campbell, & Westdal,
2019). This lack of understanding becomes problematic when police interact with autistic
individuals in the community.
In 1991, a video tape was released to the media showing LAPD officers savagely beating
a Black man named Rodney King on the side of the road. The tape would be the key piece of
evidence against four officers who were charged and put on trial for the assault, which left King
with 11 skull fractures, a broken ankle, and a traumatic brain injury (Kirk, 2001). When the
officers were acquitted of the charges, riots began in Los Angeles. After five days, more than 50
people were killed, thousands of businesses burned (Sastry & Bates, 2017), and the modern era
of police and marginalized community tensions began.
There have been several high profile cases reported in the media of neurodivergent
individuals who have been wrongly imprisoned, injured, or killed by law enforcement officials.
During data collection for this project, participants regularly referred to events they had seen in
the news. One of the most frequently cited cases is that of Charles Kinsey. Kinsey was an
employee at a group home for autistic adults in Miami, Florida in July 2016. Kinsey, who is a
Black man, had followed one of the residents of the house outside. The resident was eloping and
Kinsey was going along making sure the young man remained safe. When the autistic client sat
in the street, Charles sat with him, hoping the break would provide an opportunity to relax and
de-escalate. When a police officer drove onto the street, they saw the two adult men sitting in the
road. One holding something. Police screamed at the man to drop whatever he was holding,
Kinsey yelled back that it was a toy truck and that the young man was autistic. Undeterred, John
Aledda, a SWAT officer, fired three shots from his M4 Carbine rifle, missing the autistic man
who was his intended target, and hitting Kinsey in the leg (Elfrink, 2019; Neuman, 2019; Rabin,

124

2016). The case garnered national media attention that was clearly impactful to parents of
neurodivergent children in this study.
Overall statistics on police violence are difficult to obtain. In the wake of the death of
Michael Brown at the hands of Ferguson, Missouri police, The Washington Post launched a
Police Shooting Database, tracking media and police reports of “officer-involved” shootings.
While the FBI has tracked police shootings in the past, reporting of incidents was left to the
discretion of local law enforcement agencies (Alpert, 2016; Klahm, Papp, & Rubino, 2016). In
2020, police killed 1,127 people in the United States, including 94 who were killed when police
were responding to a call for assistance in a mental health crisis (Srikanth, 2021). While current
data makes it impossible to know how many of the people killed by police were neurodivergent,
a report from the Ruderman Foundation found that between a third and half of people killed by
police have some sort of disability (Perry & Carter-Long, 2016).
By the age of 22, 1 in 5 autistic people has been stopped and questioned by police and
4.7% has been arrested (Rava, Shattuck, Rast, & Roux, 2017). For those with “externalizing
behaviors” such as verbal or physical aggression or stimming, the odds of being arrested are 1.73
times that of an autistic peer without externalized behaviors (2017). The majority of the autistic
participants in Rava, et al., expressed dissatisfaction with the quality of interaction with police.
Though the academic scholarship related to autistic interactions with law enforcement is lacking,
several systemic factors have been identified which contribute to an increased likelihood of a
poor interaction between police and autistic individuals.
Behaviors Misinterpreted
Many of the behaviors exhibited by people of all ages on the spectrum are atypical.
These atypical behaviors can be benign and private or can be extreme and draw attention in
public spaces. These behaviors occasionally take the form of aggression toward self or others or

125

destruction of property. Aggression has been reported between 25% (Hill, et al., 2014) and 53%
(Mazurek, Kanne, & Wodka, 2013) of autstic children. Most frequently, the aggression is
directed toward themselves or a known and trusted family member or helper (DeGiacomo, Craig,
Terenzio, Coppola, Campa, & Passeri, 2016). These incidents are often seen as just part of daily
life and understood as a means of communication or an expression of frustration about a specific
problem by those close to the “aggressive” person. For bystanders, these events can look like
assaults and the strategies used by parents or helpers may look like abuse. Police can become
involved when a well-meaning witness reports an incident that occurs in a public place or when
the noise of an event carries beyond the walls of the home.
For some mothers in the study, the stakes of misinterpreted behaviors were made clear
early. When Maya was a baby she “didn't want to be touched, she could barely be breastfed..it
was very difficult for my daughter to do anything... she would cry, scream, hit herself, scratch,
take off all her clothes.” Ella, Maya’s mother, said that the screaming drew the attention of a
neighbor, who called police “saying I was beating the child.” Police responded and children’s
services were called to the home. Maya was evaluated in an emergency room for signs of abuse
or neglect. “they sent me home with a note... They said... ‘The mother is not beating her.’ You
know, um, she told me to show that to the cops next time they came to the door, so that they
wouldn't call children services.” Maya was undiagnosed at the time and would remain so for
several more years. Perhaps if a professional had recognized the symptoms the mother and
daughter could have been linked to services and supports rather than being subjected to a
traumatizing investigation. As a Black girl, Maya was more likely to be overlooked for diagnosis
than her white or male peers (Fombonne & Zuckerman, 2021; Singh & Bunyak, 2019; Taylor &
DaWalt, 2020; Wiggins, et al., 2020).

126

The misinterpretation of autistic behaviors or communication styles can become
problematic in even routine interactions with authority figures such as police. For Ava, an
autistic high school student, a series of misunderstandings with a police officer based in her
school escalated to her being handcuffed and humiliated in front of her classmates.
Ava told the story with her parents during an interview. According to her father, the
incident began when “there was a possum on the lawn in high school and a cop was there, Ava
picked up the possum and was petting it, Ava is good with animals.”
“She loves wild animals,” added Ava mom.
“And the cop said, ‘do you want a ticket?’ Ava thought, he said, do you want to take it?
And she said, ‘Oh yes, off course!’ Which is talking back to a cop, by their strict rules.”
Mom interjects again, “So for ever more after that he was on our case because he thought
she was a wiseass.”
Sometime later, Ava was having a particularly difficult day at school. She’d had an
argument with a teacher who the dad describes “would not let her sit in the front row like the IEP
says.” During the lunch break, feeling emotional and not wanting to let other students see her
crying, Ava found a place outside to be alone for a moment. Her father’s telling of the story
continues, “As she is out crying the cop puts her in handcuffs.”
Once in handcuffs, the officer “paraded her” across the crowded grounds and through the
lunch hour halls of the school to the principal's office. “For ditching school,” Ava adds.
Elopement
Nearly half (49%) of autistic children above the age of four have wandered away from
home or from caregivers in public spaces at some point in their lives, with half of those being
gone long enough that the parents or caregivers were seriously concerned (Anderson, et al.,
2012). Elopement is not a well-understood phenomenon. Minimal attention has been paid to it

127

academically and, despite the high prevalence, families are rarely informed by health care
professionals that this may be a problem they will encounter (Solomon & Lawlor, 2013). The
frequency of wandering is one of the major factors in premature death rates for autistic people
two times higher than average (Mouridsen, Brønnum-Hansen, Rich, & Isager, 2008). The stark
reality of the danger of wandering means that police are often brought in quickly to locate and
return children.
Several participants shared experiences with elopement that ended with police
involvement. One participant talked about an autistic sibling who was “taken by the police at
least two different times” after eloping from their house, adding “luckily the cop who found him
was nice and understanding and brought him home.” A mother told the story of the immense
work she had done in her community to create a safer environment for her daughter whose
frequent elopement had led to being handcuffed by police in 4 separate incidents before her 18th
birthday.
I have always feared, and you can go back and run back the tape from this study alone,
I've always worried about the police killing her...So, I made a plan by going down to my
local police department, showing them a picture, giving them a letter with the two kids,
saying these kids have autism, they are not able to...you are not able to touch them, they
have sensory issues, I gave both of them a medic alert necklace, and we taught them how
not to be afraid of the police, but introduce yourself stuff that all kids need to know
anyway, especially kids with autism, how to be safe around water, safety, safety, safety.
Anxiety about police use of force limits the opportunities for autistic adolescents and
young adults in the community. Frank, now 18, lives at home with his mother Megan and
grandmother Gloria. Megan describes an affectionate and charming young man who likes and
trusts most of the people he meets. Diagnosed with autism, ADHD, and epilepsy, Frank is
“completely non-verbal.” His lack of speech is often misinterpreted as a lack of language or sign
of intellectual disability. In reality, Frank responds to verbal communication, but does it in a way

128

that is not recognized by many neurotypical communicators. At home and school, those who
know him give him time to respond to a request or answer a question with his actions.
On New Year’s Eve when Frank was 16-years-old, he slipped out the door of his family
home shortly after dark. Megan shared the story shortly after it happened during a collective
narrative meeting. Megan and Frank are Black, a fact that adds a layer of complexity to the
analysis of this story. The tension between the Black community and police is a factor, and one
that I assume some readers will view as overshadowing the facets of this story related to
neurodivergence. It is not my intent to attempt to separate or even distinguish between which
anxieties are related to being Black and which are related to neurodivergence. The two elements
of their intersectional identity are inseparable in their experience of these events.
Megan’s experience and cultural narratives as a Black woman in the United States have
sown a rational and, pragmatically speaking, true belief that police in her hometown are not there
to “serve and protect” her family. Her experience as a mother of an autistic teen and becoming
involved with autism advocacy organizations, has reinforced the truth of this belief. So, on the
night that Frank eloped, Megan was panicked, but felt like she had nowhere to turn for help:
I was so terrified to like, call the police cause that’s the first thing you would think of. I
literally picked up my phone and then I was terrified because he doesn’t he, doesn’t
understand commands. So the ‘stop, freeze,’ I didn’t want them to do anything, cause
they are totally not trained to do anybody that is special needs”
She was outside with her dog for two minutes. When she returned, Frank “was nowhere to be
found.” She searched inside before going back outside:
My son is huge now, he’s 6 foot 4, 240, so I, you can’t miss him. And so, I'm in panic
mode, I'm running around the entire complex and I don’t see him anywhere...so I run
outside the gate, I just started running down the street you know, and I see a, I just see
someone, and I’m like, “Did you see a really tall guy” and they’re like, “Oh yeah, there’s
a guy with no clothes on that way.” And I’m like ‘Oh my god” and I'm immediately
thinking like traffic, he doesn't understand, he just walks into the street at times, so, I'm
running, running, running again until I see another person. You know, everybody I saw

129

I’m like, “Have you seen this kid.” My son is completely non-verbal, but he’s never done
this before. And so they’re like, yeah there’s a guy on [a major street] walking down the
street.
As Megan recounted this story in a collective narrative session, the other parents and the
members of the research team were rapt. The tension in her voice was apparent, she spoke
quickly, matter of factly, eliciting gasps from the room as the events of the story were revealed.
At this point in her telling, Megan skipped ahead in the timeline, filling in the details she learned
after the fact. Going back to her experience that night, Megan soon found her son, as described,
undressed, in a busy street:
So, I mean I’m running, I'm running, I'm running, and when I'm approaching him, he’s
surrounded by people with their camera phones out laughing, and my son has on no
clothes. He has on boxers, but no socks, no shoes, no shirt....they were making fun. And
my son was so big they thought he was some older man on drugs you know. ... I couldn’t
even breath by the time I saw him, I was belligerent, and it’s like as soon as he saw me it
clicked, like I am in trouble, his eyes got big, he was so, he was afraid, so he takes off
running. In the street. And so, I’m then screaming, NO, which is making it worse and so,
some bystanders saw it, they caught on immediately cause as I’m running I’m like, “He
has autism” and everybody dropped their phones and they were so apologetic, then they
wanted to help me you and they walked us all the way back home...I can’t even talk you
know, it was 15 minutes and it might as well have been 15 hours you know
When Megan caught up to Frank that night she was thankful he was safe but scared by the
prospect of it happening again. She was also confused. Frank came home that night with a
package of cookies in one hand and a bag of candy in the other, neither of which had come from
their home. Megan took a stack of photos and ventured out into her neighborhood to introduce
herself and Frank to as many neighbors as possible. Handing out her phone number, she begged
local shopkeepers and her neighbors to call her first if they saw him alone in the community.
I still, I still never fully found out what happened until the very next day, I just started
going to all the stores, cause I don’t even know where he got the snacks from, ... I
realized well only one store in this entire area has both that brand of cookies and the Sour
Patch Kids... so the next day as soon as I walked into the store..., he goes ‘What happened
yesterday?’ I said, ‘So he did come in here.” He goes ‘Yes...at first I looked up I was just
thinking, another crazy customer, but as soon as he walked into that area it clicked to who

130

your son was’...So, after a bit of research what I, I learned was is, he walked to his
favorite store. He walked in and he got himself some cookies and some Sour Patch Kids.
He walked to the front counter and he put it down and looked to the person next to him
like, pay for this you know, and the cashier he recognized my son cause we’re always
together, he’s like ‘Oh my god, I know his mother’ and he’s like ‘I don’t even know their
names, I just know that she lives somewhere around here’ and so um, he said that he told
the guy like ‘Can you just walk him out, back to that corner cause I know they live that
way.’
The story, fortunately, has a pleasant resolution. Frank wasn’t injured, apart from some
scrapes on his bare feet, and he was safely back home within 30 minutes. But the trouble in this
story is not resolved simply because Megan’s worst fears were not realized. The trouble is in the
existence and truth of Megan’s narrative of community safety. The barrier is reinforced by the
unwillingness of neurotypical culture to disturb existing narratives and address the conditions
that have created Megan’s anxiety.
Victims of Crime
Many autistic people will interact with law enforcement officials as the victims of a
crime. Autistic people, throughout the lifespan are significantly more likely than their
neurotypical peers to be the victim of abuse, assault, robbery, and sexual violence (Allely,
Wilson, Minnis, Thompson, Yaksic, & Gillberg, 2017; Weiss & Fardella, 2018). Participants in
this research made it clear that physical and sexual abuse is a regular concern regardless of the
level of support required by the autistic person. Multiple mothers of non-speaking, high support
sons talked about their children being abused by service providers in home, school, and
community settings. Autistic women and trangender and non-binary adults have been identified
as being at greater than typical risk of sexual violence (Brown, Peña, & Rankin, 2017; Brown-
Lavoie, Viecili, & Weiss, 2014; Pecora, et al., 2020).
To make matters worse, it can be difficult to find accountability for these abuses when
police (Hepworth, 2017; Christiansen, Minich, & Clark, 2021) and juries (Crane, Wilcock,

131

Maras, Chui, Marti-Sanchez, & Henry, 2020) question the credibility of an autistic person’s
testimony. One mother described the process, “sheriffs were called and everything but of course
because he can't...he is not a good witness, he is not a reliable witness, they never did prosecute.”
I will not share the details of the stories of abuse and neglect that were collected during this
project. Those are not my stories to tell. Understanding the experiences of autistic people in these
contexts is incredibly important but telling that story well would require a more focused
investigation. Weiss and Fardella (2018) note the accumulation of trauma in the autism
community as these rates of victimization continue. The role of trauma in outcomes for
neurodivergent adults is not well understood, but has increasingly been suggested as a
contributor to poor mental health, low quality of life, or high suicidality (Pelton, Crawford,
Robertson, Rodgers, Baron-Cohen, & Cassidy, 2020; Pfeffer, 2016; Stack & Lucychyn, 2019).
Compliance and Susceptibility
Violence is not the only worry for autistic individuals who encounter the police. A review
of both academic literature and the published first-person accounts of neurodivergent adults
points to concerns about susceptibility to suggestions from police. While no examples of this
were directly provided by participants in the study, media accounts and first-person writings
provide ample evidence to support this concern. Jesse Snodgrass was a 17-year-old high school
student with no criminal record and no criminal experience when he was approached by an
undercover police officer. The events are featured in a Rolling Stone magazine feature (Erdely,
2014), that describes a 21 Jump Street style operation of young-looking undercover officers
posing as students to buy drugs. Snodgrass, longing for a friend, and hoping this officer could be
it, agreed to help find $20 worth of marijuana. For this, he was arrested, charged with a felony,
and expelled from school.

132

Research has shown that individuals with autism are more susceptible to manipulation
than neurotypical people. North, Russell, and Gudjonsson (2008) found that “individuals with
ASD may be more eager to please or avoid conflict and confrontation, and therefore may
respond compliantly to the requests or suggestions of others, despite not necessarily agreeing”
(p. 331). Matthew Rushin spent a little over two years in a Virginia prison following a car
accident that left five people injured (Chavez & Hassan, 2020; Vargas, 2020). Rushin was an
autistic college student, driving to meet his girlfriend at the end of her shift at Panera Bread. On
the way, he was involved in a minor accident. As he was leaving, he reports feeling
overwhelmed with anxiety and having a meltdown. The next thing he remembers he was
climbing out of the wreckage of his car, where he was detained by two passersby who described
him as acting erratically. One witness reportedly asked Rushin if he was trying to kill himself.
He repeated the phrase and may have said he wanted to die in the panic of the moment. Rushin
was arrested and charged with several felonies for injuring people in his suicide attempt. A
public defender told Matthew that if he went to trial, he would spend the rest of his life in prison,
and convinced the teenager to plead guilty to a charge that carried a 50 years sentence. Police
and prosecutors did not consider Matthews autism or history of seizures, they did not consider
that his repetition of the bystander’s question could be echolalia rather than a confession.
Matthew’s family was able to garner attention to his case in the wake of the murder of the
George Floyd. A groundswell of support led to a conditional pardon, which saw Matthew
released from prison after 26 months (Davis, 2021; Harper & Skelton, 2020).
Intersectionality
The culture of American policing has been a concern for members of minority and
marginalized communities since the advent of American policing. Major cities established police
departments with patrol officers and detectives, while early American rural police forces were

133

made up of “slave patrols” who were tasked with preventing slave rebellions, catching runaway
enslaved people (Reichel, 1988), and rounding up “vagrants” to “force them to accept labor
contracts with local planters” (Hardwick, 1993, p. 115). Tensions between police and the Black
community have remained a feature of the system since the abolishment of slavery. On May 1,
1866, Memphis police were prevented from falsely arresting a Black man by a nearby group of
veterans of the 3rd US Colored Heavy Artillery Regiment. Police responded with force and were
joined by local white mobs. After two days, more than 45 Black residents would be killed,
dozens more were injured, and 91 Black owned homes were burned to the ground along with
every Black church and school in the city (Hardwick, 1993; Ryan, 1977). Similar events
transpired again and again, in Meridian, Rosewood, Tulsa, Harlem, Atlanta, Selma, Watts,
Philadelphia, and countless other cities and towns across the United States. More recently, a
series of high profile killings of Black people by police has led to rallies and demonstrations
around the world. In 2020, more than 25 million Americans participated in Black Lives Matter
demonstrations, with rallies happening in 550 cities on June 6 alone (Buchanan, Bui, & Patel,
2020).
Neurodivergence is, as one adult autistic participant said, “another thing to tick off on the
many disprivileged senses that I get to experience in life.” The intersectional framework
(Crenshaw, 2017) describes a way of understanding the dynamic interrelated and overlapping
social, cultural, and political categories that combine to form an individual or group identity. For
individuals with intersecting identities in other marginalized communities, mistrust of the police
can be ingrained in the culture already (Kahn, K. B., Lee, J. K., Renauer, B., Henning, K. R., &
Stewart, 2017). Black participants in this study universally described historical and systemic
injustices perpetrated Black and Autistic people by law enforcement as a barrier to feeling

134

comfortable and safe simply being in the community. The comedian and actor Ron Funches, a
Black father of an autistic son, told an interviewer that he attributes his drive to succeed to
concerns about his son’s safety:
It's been a concern of mine for many years...that because of him being mixed race being
half black and half white and having autism ...he doesn't respond to directions as quickly
as some people would like and I was always concerned that if he was in an altercation
with a police officer that could mean the end of his life. So it's something that was deeply
concerning to the point where you know, I didn't necessarily like him out of my sight that
much. A lot of my motivation was trying to insulate that with money being like, okay, we
can surround him in a good neighborhood if we can surround him with a nanny that's
there, even though he's 17 years old. We have a full-time Nanny just to make sure that
someone is with him and it's not because he's not independent. He's very independent it's
a lot to do with my fear about what could happen with misunderstandings with others
especially people like the police, people with power....and that really says a lot right there
that if you are in a bad situation, if you're if things are feeling out of control of like you
don't want the police because their fear is that they will escalate the situation...It's
something I dealt with when my son was younger when he was five six seven years old
and he would be overwhelmed by different stimulus. He would have these big tantrums
and it would involve people calling the police to my house and I was lucky that it never
escalated but ... you know, no one ever came over to say “hey, what could we do to help?
What was the issue? What's going on?” Instead they would come over, they would tell us
to shut it down and shut him up, and then they would call child services and then we'd
have to deal with that. It was always like you're a bad parent or you don't know what
you're doing as opposed to you need help. (King, O’Brien, & Sweeney, 2020)
Narratives of negative interactions with law enforcement, and anxiety about future
interactions, were shared by participants across demographic groupings. Black, white, and
Asian-American participants from varying socio-economic backgrounds described experiences
that have left them with little trust in police to ensure safety. Autistic adults described avoiding
participation in occupations in community spaces because of fear of police, while parents and
service providers shared stories of anxieties about police limiting access to community-based
services.
Meet the Peete’s
Another mother of a Black autistic teenage son learned about the shooting of Charles
Kinsey and used her resources to create change. Holly Robinson-Peete, the actress and singer,

135

and her husband, Rodney, partnered with Spectrum Shield, an organization that conducts
trainings for autistic AYA (Law, 2017). The focus of the program is on coaching the young
people but the program also allows participating police officers to gain real world experience
with autistic individuals. The experience of their autistic son RJ in the program was documented
as a part of a reality television show about the family (Thomas, 2017). Captured in the episode is
this exchange between Holly and RJ, the fear in Holly becomes palpable as she asks him what he
would do if he was talking to a police officer:
Holly: “What would happen if you got scared?”
RJ: “I would call my mommy”
Holly: “No, because then you have to reach into your pocket and get your phone and that
would be a problem because…”
RJ: “They will shoot you” (2017)
There is an innocence in RJ’s first answer that is betrayed when he interjects matter of factly that
police will shoot him. Holly is overcome with emotion in the scene, afraid of what might happen
to her son. In an interview during the episode (2017) she states:
What happens if RJ interfaces with the police? He’s a quirky kid. Yes he has language
and he’s come so far, but he still has autism… He doesn’t always process things in the
way a typical kid would… one of our biggest fears everytime he leaves this house
whether on foot or you know eventually in a car is what if he gets stopped by the police,
what if he fits the description of someone they’re looking for, and what if an interaction
ensues and there’s a misunderstanding, a sudden movement, all of these things have us in
total fear.
After the conversation, the parents explain the role-playing scenario to RJ and his younger
brother Robinson. As the boys walk across their yard, the two former police officers from the
panel tell them to stop and put their hands up. They begin patting the brothers down and
questioning them about where they have been. Playing along, Rodney barrels out of the house
confronting the officers about why they are detaining his sons. RJ and Robinson ignore their
emotional father and do what the officers tell them. In the end, Rodney deems the experiment
successful. He sums up the experience by saying, “the biggest lesson that I hope the boys

136

understand is that if you get pulled over by the police, just do what they say and chances of you
getting out of that situation safely go up greatly.”
Breaking Down Barriers
Efforts have been made by community groups to provide training on recognizing and
understanding autism. There have been trainings focused on elopement, on interrogation, on
behavior de-escalation, and most frequently on the basics of what autism is (Hepworth, 2017;
Laan, Ingram, & Glidden, 2013). Whilte these trainings have shown efficacy in increasing
knowledge about autism (Teagardin, Dixon, Smith, & Granpeesheh, 2012), there are no national
standards for police training and few departments are mandating or even offering this type of
training for their officers
The National Autism Association is a non-profit organization formed to “respond to the
most urgent needs of the autism community” (2017). The organization provides toolkits and
trainings to families, schools, and first responders on interacting with police. Among the
resources in their police kit is a guide for families to initiate contact and introduce their kids to
officers they may encounter. The resources and suggestions are a great idea for individuals who
have a trusting relationship with the police and are in a community where the police department
is small enough to reach officers who may encounter the individual. In major cities, such as Los
Angeles, this strategy has much less likelihood of success. There are roughly 9000 officers in the
Los Angeles Police Department and 10,000 officers in the Los Angeles County Sheriff’s
Department. It is not feasible to utilize the suggested approach to reach all or even some of the
officers that may respond to a situation involving any one person in LA. There is also a deep rift
of mistrust between many communities and the police that patrol their neighborhoods, making
this approach unlikely to gain traction.

137

Another initiative to better equip first responders to help individuals in mental health
crises is the crisis intervention team (CIT). CITs pair specially trained professionals with law
enforcement officers to respond to calls involving mental health needs. The original CIT team
was created in Memphis, TN following the police shooting of a man with a long history of
mental illness (Dupont & Cochran, 2000). The state of Utah passed legislation creating a
statewide CIT to respond to mental health crises.
On September 4, 2020, Golda Barton called 911 from her Salt Lake City home to request
a CIT response. Her 13-year-old son Linden was having a meltdown. Golda was returning to
work after being home in COVID-19 lockdown and, for Linden, the disruption in routine and
separation anxiety were overwhelming. She knew about the CIT program and hoped they could
help de-escalate the situation. The officers who responded to the 911 call were not trained CIT
officers (Burt, 2020). After chasing Linden, who they were told was autistic and unarmed, into
his backyard police claimed they felt threatened and fired their weapons, hitting the 13-year-old
11 times. Body camera footage released later shows the young man laying on the ground after
the shooting, somehow still alive he says, “I don’t feel good. Tell my mom I love her.”
When the story appeared in the national news a few days later, autistic people and their
families took to social media to react:
● “As an autistic person, this is why I fear the police. This is why I march.” twitter user
@dare2defend https://twitter.com/Dare2Defend/status/1303400790917177345
● “Essentially what you need to know is never get the police involved when there are
autistic people present because they end up killing us quite often, especially in the states
where the cops get trigger happy when they don’t understand what’s happening.” verified
twitter user autistic artist Bethany Black @beffernieblack
https://twitter.com/BeffernieBlack/status/1303398270216085510
● “Oh boy, police shot at another autistic kid. 13 years old this time, am I next? Who
Knows” twitter user @ivankomaeda
https://twitter.com/IvanKomaeda/status/1303394392875573249

138

● “This is likely my greatest fear, that Police take UNNECESSARY LETHAL FORCE on
my AUTISTIC SON.” @trillblacklos
https://twitter.com/TRILLBlackLos/status/1303394108036329474
● “My autistic son is 30 and sometimes needs more support out in public and has had
brushes with the police. Thank God nothing happened, they were helpful instead. I do
often wonder what if he were black, rather than blonde and blue eyed.” @susansenator
https://twitter.com/SusanSenator/status/1303392938588864513
● “As the mother of a 14yr old autistic child, this is my worst nightmare. Not only do we
need better training for Responders, we need appropriate Responders, and the police are
not it.” @KimberWitch https://twitter.com/KimberWitch/status/1303391926507286528

Discussion
Neurodivergent adults recognize police as a risk and as a reason to avoid public spaces.
This anxiety reduces the opportunities and contributes to anxiety and distress for participants
engaged in community-based and community-building occupations. Despite immense work from
advocates, police today are undertrained to respond to the needs of the communities they serve.
The consequences of these misunderstandings have caused them to be “singled out” (James,
1907) by the autistic community. The experience of participants in this study has rendered the
idea that police “protect and serve” false. For neurodivergent communities, the truth is that the
presence of police is a barrier to community-based occupations, a truth that is amplified for
autistic individuals who are also members of another marginalized identity group. The truth that
police are a danger serves neurodivergent adults more than the idea that police are there to help.
The Pragmatists define truth as having relevance to our lives, as providing a framework for
actions, or in other words as having some predictive value. Some individuals arrive at the truth
too late, Linden Cameron’s mother called 911 to ask for help and he was shot 11 times. Megan,
when her son ran out of the house in his boxer shorts, knew the reality of the police.
“The first thing you think of” is to call the police when your child is missing. She said, “I
was so terrified to like call the police... I was terrified because he doesn’t he doesn’t understand
commands. So the “stop, fr..” I didn’t want them to do anything, cause they are totally not

139

trained for anybody that is special needs.” Poor training and a lack of understanding of
neurodivergence are not problems exclusive to law enforcement. Knowing what we now know,
and with prevalence rates of autism at 1 in 54 American children (Maenner, et al., 2020), it is not
reasonable to allow these gaps in knowledge to persist.
Police are the manifestation of our community values of justice and equality under the
law. They are given extraordinary power to enforce culture as it has been encoded into law. The
experiences of participants in this study call into question the traditional narrative of police as
serving and protecting the people within their jurisdiction. Instead, police are seen as enforcers of
dominant culture that maintain order through physical force. The level of force needed to bring
order is seemingly dependent on the officer’s assessment of an individual’s place within the
dominant culture, rather than any objective measure of the severity of a cultural infraction.
A poor understanding of autism and lack of cultural humility is not a rare combination in
current social and cultural institutions. In the event of an emergency, very few professionals are
confident or competent to provide care for autistic adults (Kelly & Hassett-Walker, 2016; Love,
Railey, Phelps, Campbell, Cooley-Cook, & Taylor, 2020). Emergency room staff (Zanotti,
2018), doctors (Hartley-McAndrew, Doody, & Jana Mertz, 2016; Zerbo, Massolo, Qian, &
Croen, 2015; Unigwe, Buckley, Crane, Kenny, Remington, & Pellicano, 2017), psychiatrists
(Crane, Davidson, Prosser, & Pellicano, 2019), and jail or prison staff (Helverschou, Steindal,
Nøttestad, & Howlin, 2018 ;Vinter, Dillon, & Winder, 2020) are each unprepared to provide
responsive care or services to neurodivergent adults.

140

Chapter 7: Lives in Breach
“The world does not speak. Only we do. The world can, once we have programmed ourselves
with a language, cause us to hold beliefs. But it cannot propose a language for us to speak. Only
other human beings can do that.”
-Richard Rorty, Contingency, Irony, and Solidarity, 1989

“Being Autistic in the modern world IS a disability. Nobody is claiming it isn’t. However,
blaming Autistic People for not fitting into NT society is cruel. It’s time to fix the systems &
accommodate Autistic People. Autistic People are not broken. The world is broken…. Asking for
the world to change instead of asking Autistic and NeuroDivergent People to change doesn’t
ignore the struggles of Autistic people, it begs NeuroTypical Society to flex itself to let us into
their world, creating a world that is more inclusive for everyone. It also asks for the medical
system to overhaul how current prominent “therapies” can cause PTSD and are widely
recommended despite this fact. We also ask the current system to change how it handles Autistic
& NeuroDivergent health and mental health. The current system is broken. Some parts of it
cannot be saved.”
-Lyric Holmans, Neurodivergent Rebel, 2021

I thought that I was prepared for my first interview with Dylan, a participant who had
recently enrolled in my dissertation study. I had my interview guide open, two digital recorders
with fresh batteries, a notepad, a pen, and a bottle of water. I had recently completed a major
revision of my dissertation proposal due to restrictions put in place to address the spread of
COVID-19, and was excited to start gathering new data, focused on understanding barriers to
community occupations faced by autistic adults.
Dylan (they/them), had been in and out of services for their entire life. While they
wouldn’t receive an official autism diagnosis until the age of 12, they had been identified as in
need of accommodations and support early, “When I was really, really young I was in speech
therapy, I was in OT, I was in feeding therapy, and a lot of stuff.” As we talked about work and
school accommodations, I asked if anything stood out as particularly helpful. Dylan shrugged
and shook their head to say as if to say no. I thought about the parents in the Collective Narrative
group. In parent interactions, stories about successful services were most often focused on an

141

individual service provider rather than a system or type of service. I reformulated the question in
my mind, and asked with awkward pauses as I chose my words, “Through school or your
jobs...have there been people who were...good to you along the way?”
Dylan thought about, their eyes moving slightly as if searching the cracks and crevices of
memories. The silence sat heavily for about 5 seconds and I tried again, “people who did the
right thing or did something to help you out?”
After another 10 seconds of reflection, Dylan shook their head from side to side, “I’m not
really sure.” It was clear in the moment that Dylan had understood the question, but could not
recall an example from their experience.
I did not know what to do or what to say at that moment. It hurt as a person to sit with
Dylan, knowing the extent that they had been failed by their community, by our community. It
was also a moment that I hope I never forget. I didn’t find Dylan’s experience surprising, but I
was still unable to stop thinking about that moment over the next several days. It fits the
narrative of autism services that I have come to know as the truth. As I reflected over the coming
days I understood that this moment presented a breach of a different narrative truth.
Therapists, doctors, educators, 504 plans, and, in Dylans experience, not a single example
of someone being good or helpful. I wrote a field note as soon as the interview ended. As I was
writing, I flashed back to a moment in Bryan Stevenson’s (2015) remarkable memoir Just Mercy.
Stevenson is a lawyer who has spent his career seeking freedom for men condemned to die in
prison, as an advocate for wrongfully convicted men on death row and against life sentences for
juveniles. There is a moment in his book that occurred as Stevenson visited a client on the day of
his execution. As they sat and talked, the condemned man said, “More people have asked me
what they can do to help me in the last fourteen hours of my life than ever asked me in the years

142

when I was coming up” (p. 89). Dylan had been offered help throughout their life, yet did not
recognize it as helpful. The two stories are dramatically different, but I am unable, as much as I
try, to find a meaningful difference between not helping and not helping.
The final line of my note from that day says simply, “we’re failing each other.” I’ve
reflected deeply on that failure. A failure implies that there is a standard that I do not think is
being met, and I have struggled to articulate what that standard is. I believe, for reasons
elaborated earlier, that humans are social beings and that we are inextricably interconnected in
our minds and in our realities, and that these connections give rise to an ethical obligation to one
another. Further, I believe that this sense of duty is present in most people, in all cultures. This is
not a claim that I can make with evidence, I can cite the altruistic principles espoused by
Buddhist, Christian, Hindu, Jain, Jewish, Muslim, and Sikh philosophies, or the animist
traditions of Africa and pre-colonial ways of being of indigenous Americans and Polynesians. I
can point to a body of human rights law based on this principle and the Constitutions of over 200
nations and states that recognize the duty. However, I cannot know what most people believe.
In my narrative of myself in this process, I was working toward increasing access to
services and supports. I had found myself in a position to dedicate the time and energy to
studying the barriers to services, because it was the first step in eliminating them. I was operating
as if this was an issue mainly one of access. While access is a real issue, it is perhaps secondary,
from the perspective of neurodivergent adults, to the issue of meaning and alignment of services.
Herbert Richardson was never offered help; Dylan was, but their experience receiving help was
the same.
I have had a unique opportunity in the course of my work experience and education to be
exposed to a wide range of individuals whose work relates to autism in one way or another. From

143

educators to service providers to researchers, I have not met anyone whose motives were
anything but good. In my experience, the people in these fields are in them because they want to
help people live better, more satisfying lives. We aren’t achieving this, however, and despite
efforts and intentions, outcomes remain poor and distress remains high for neurodivergent adults.
The stories I’ve shared have been stories of moments in time, of barriers to services and
to safety. Some of these moments were big, recognizable breaches of the norm, like an arrest or
passing an exam. Others were not. But each was a story, shared by participants with a beginning,
a middle, and an end. The narrative structure fully “‘realized’ when its parts and whole can, as it
were, be made to live together” (Bruner, 1991 p. 8), allowing sense to be made of moments that
defy simple or prediction. Through this process we have the ability to render “ordinary, banal,
and thus comprehensible” (Mattingly, Lutkehaus, & Throop, 2008, p. 13) the extraordinary and
incomprehensible.
There are other breaches that are not as accessible, ones that may not be storied yet, the
breach in progress, the unsolved mystery. We are primed, according to Bruner, to seek
explanation for the unexplained happenings in our lives through these narrative processes.
William James said, “New truths thus are resultants of new experiences and of old truths
combined and mutually modifying one another” (James, 1907, p. 169). Truth, in this regard, is
another word for the narratives that guide our action. We are in search of narratives and truths
that let us navigate our worlds as efficiently and effectively as possible. Narratives are concerned
with “not simply how things are, but often implicitly, how they should be” (Bruner, 1990, p. 39-
40).
For the autistic adult participants in this study, the question of how things should be was
one that they were rarely allowed to answer for themselves. Neurodivergent individuals

144

frequently describe the world as not made for them (Lloyd-Williams, 2018; Somers, 2020) and I
would argue that that lack of representation extends to many of our shared cultural narratives.
Autistic people are frequently left to reconcile their reality with a cultural narrative that does not
include them. Because this mode of making meaning is “designed to contain uncanniness rather
than to resolve it.”(Bruner, 1991, p. 16), the results can be destructive. In other words, our minds
do not like the loose ends caused by a breach and will take the first chance it gets to clean them
up, rather than seeking to repair the damage by seeking some ultimate truth.
The existence of “true” narratives offer us the ability to predict the world around us. They
allow us to know what will happen, by knowing what should happen. Systems in our brains
constantly analyze and interpret a barrage of sensory input, in a 24 hour a day triage operation,
marshalling limited energy and chemical resources to keep us alive. Knowing what should
happen, allows for many of the routine functions to, for lack of a better descriptor, run in the
background at a reduced energy cost. The predictive value of our narratives plummet when no
explanation for a breach can be found. This stress causes our frontal lobes go to work trying to
make sense of discrepancies, taking up more of the bodies store of calories and glucose (Macrae,
Milne, & Bodenhausen, 1994; Pichora-Fuller, et al., 2016; Scholey, Harper, & Kennedy, 2001)
and our ability to intentionally regulate our focus and attention to complete other tasks
(Ellenbogen, Schwartzman, Stewart, & Walker, 2002). When a breach occurs, it is valuable to
contain the damage, to stop the hemorrhaging of resources and return to a baseline.
In the absence of an explanatory narrative, we seek a source of blame for the trouble of a
breach that will satisfy our need to know. We often channel “not knowing” into anger at the
source of the trouble, or our culture’s designated source. When an individual encounters a
breach, they assess the coherence of the situation to their existing narratives. Blame is assigned

145

to acts that diverge from those that are cultural norms, and the responsible party is viewed as at
fault. The closer in keeping the responsible party is with the culturally predicted behavior, the
less individual responsibility, or blame, we assign to the act.
Finding a Place to Belong
“I started finding my love for art and stuff when I was about 11, 12ish.” Dylan was
transitioning from elementary school to middle school, from being a child to being a tween. Art
offered a respite from the increasingly difficult social world of adolescence. It was something
that Dylan was good at and liked to do, and provided an opportunity to express and engage with
what they found meaningful. A childhood interest in history led Dylan to discover a Japanese
anime series that would become a great passion. It’s “a historical fiction fantasy piece that’s set
in the Victorian era...When I was like 12, I binge watched the first two seasons on spring break
in two days and now 13ish years later, I have a tattoo of OTP, which is one true pairing for the
whole shipping community.” Shipping refers to a practice in fan fiction and fan art communities
of creating new works that show a desired relationship between two fictional characters that did
not exist in the original text; the concept has been adopted more broadly in fandom communities,
with at times contentious debates over who a character’s “one true pairing” or OTP ought to be
(Hadas, 2013; Kuo, Perez-Garcia, Burke, Yamasaki, & Le, 2020).
The fandom community became an important space for Dylan to be themselves. In
middle school, “everybody was getting into Twilight,” the young adult romance book and film
series set in a world of vampires and werewolves. For Dylan, who had discovered and become
interested in the goth aesthetic online, it presented an opportunity to find connection. But, they
said, “realizing that I was queer at a young age, I was like, I'm not into this hetero lovey dovey
stuff, that’s not for me.” So, when Twilight came up in classes or social situations, Dylan told
their peers about the gothic anime or Victorian era folklore that felt relevant, “they're literally

146

into vampires and stuff. So, I'm like, y'all should be getting into this goth alternatively sort of
stuff that I'm into. That logically makes sense.”
The attempts to engage with their community was rebuffed. “People were like, ‘You’re
annoying,’ ‘you’re dumb,’ ‘you’re a baby,’ ‘why don’t you like this.’” Reflecting on navigating
the increasingly complex social world of middle school, Dylan says, “I didn't really have the
social skills at the time. I wouldn’t you know, low-key stop talking about” special interests.
Being mocked by peers became expected. “It was always special interests...I was the first one to
dye my hair, because I dyed my hair like my favorite characters that I was into and stuff and
people were like ‘that's gross,’ ‘that's weird.’”
Around the same age, Brian (he/him) found the occupation that would give him purpose
and direction. “When I was doing English homework in eighth grade, I noticed being able to type
quickly. I also studied Anne Frank's diary that same year, and aspired to be like her.” Realizing
that writing could be something more than just doing homework, Brian started looking for
opportunities to exercise his talents. Language arts classes in high school were a bright spot in an
otherwise dreary experience. “High school was the worst four years of my life. I was not
popular, knew a lot of mean people, and suffered in classes in which the teachers had unrealistic
expectations.”
Teachers, as Brian recalls, dismissed academic difficulties in Advanced Placement
courses. They “falsely assumed I was ‘being lazy’ when in fact my brain could not process
difficult college-level content when I was a teenager.” In one instance Brian sought out help
from the teacher after a poor performance on a history exam:
I even tried to ask this person if I had 'testing anxiety’ or ‘maybe I am having trouble
learning the material.’ Instead, the teacher simply snapped at me by saying, ‘Because
you didn't study!’ As a result, I felt lost, hopeless, and humiliated because my teacher
lacked compassion and understanding.

147

He offered a bit of critique and advice for educators, “If students are struggling, offer chances to
help them rather than simply assume that they ‘do not study’ or ‘are not working hard enough’
through the fundamental attribution error.”
I asked Brian what he did with his free time in high school. He replied, “I liked to watch
Turner Classic Movies after school, and I liked to spend time alone because of my lack of high
school friendships.” Brian didn’t share a lot of stories about specific interactions during this time.
But the experience left him feeling “monstrous.” He said “I considered myself strange and weird
because that was what some of my schoolmates had labeled me.”
High school wasn’t much better than middle school for Dylan. They’d been able to gain
accommodations at school to increase time for testing, a source of anxiety since the 3rd grade. A
school wide standardized and timed multiplication tests brought on the anxiety for the first time:
I was like, ‘Oh, I'm not good at test taking’...Getting told, ‘you're finishing too early’ and
stuff and I'm like, ‘I don't like this. I don't want to do this.’ So, I'd get this done as fast as
I can and I don't care if it's right or not. Just get it out of my face.
While the accommodations took some of the stress out of testing, they did nothing to change the
culture of the school. Dylan still struggled to find acceptance amongst their peers or from many
of the adults in their life. “I liked my art class. I liked my Japanese class. And that was pretty
much about it,” they recalled. They had friends in those classes, and found the subject matter
meaningful. Art classes allowed Dylan to engage with anime fandom culture by creating work
inspired by characters in their favorite shows and books.
A nearby anime convention became an annual pilgrimage during high school for Dylan
and their small group of close, mostly “neurodiverse, queer” friends. They cosplayed as favorite
characters and found a space that was free of the judgement experienced in their everyday life. I
have not personally attended an anime convention, but was familiar with the “con” that Dylan

148

attends. I’ve been to other similar events in the same building and found the crowds to be
overwhelming and exhausting. I asked how Dylan’s experience had compared to mine. They said
they didn’t mind the “convention crowd versus an everyday crowd.” The atmosphere and the
people, despite being crowded, chaotic, and loud, felt “familial and safe, rather than like being in
a crowd of strangers and stuff where it's like, people are dangerous, you never know.” The
“sensory stuff” was a challenge but one that Dylan recognized could be overcome in the safe
environment of the con.
During their sophomore year, while exploring the convention floor, they found the booth
of an organization that hires American college graduates to teach English in Japan. When they
told their mother about the program, and expressed a possible interest, they began to form a plan.
Dylan says their mother was very supportive of the goal, perhaps to the exclusion of other
possibilities. Though art, anime, and fashion were still deep interests, art classes took a backseat
to Japanese. Dylan and their mom attended information sessions about the Japanese teaching
program and asked pointedly about mental health concerns. The program told them “‘mental
health stuff is not going to deny you...we'll look at everybody fairly,’” and so Dylan applied for
college hoping to major in Asian Studies, hoping it would be a different experience from high
school. Their mother assured them it would. “It was always just, ‘go to college and you'll be fine.
It's gonna be better than high school or middle school and everything's gonna be all cured for
you... It turned out no, that wasn't the case.”
College didn’t make things better for Brian either. He had enrolled in an English
Literature program at a university just a couple hours away from home. He was excited to
expand his horizons and escape the high school experience, but he still struggled to understand
himself. He’d had some resource support in high school for a learning disability, but this

149

diagnosis did not adequately explain Brian’s experience. In the absence of understanding, he’d
taken on the labels others had used to explain his actions, the ones that blamed a lack of
willpower or defective character. He believed he was “lazy” and “monstrous.”
Brian didn’t talk a lot about his time at the university, it was a confusing and tumultuous
period of time. Anxiety and the effects of living in a culture that had taught him to devalue
himself took their toll. He had meltdowns and in moments of overwhelm broke walls and a
window and engaged in self-harming behaviors. As a result of this mental health crisis, Brian
would go on leave from college, “my family and I were all concerned about my behavior that
made my fellow college students and peers very uncomfortable.” He went back to his parents’
house to take a break and it was in this gap that he saw the diagnostician who would recognize
that Brian was autistic.
With his family's assistance, Brian began learning about autism. He researched the
condition on his own and began to see that his new diagnosis could explain at least part of “the
somewhat unusual ways that I had acted ever since my youth” in a way that meant he was not to
blame. When I asked if there are things he has learned that help him relax when he’s feeling
tense he said, “I learned breathing techniques from professional psychologists.” The real lessons
though for Brian came from the books, films, and Broadway musicals that he loves:
I use the songs ‘Let It Go’ from Frozen, and ‘Show Yourself’ from Frozen II, to reassure
myself that I do not have to be afraid of being who I am. It is true that I am different
from other adults, but being ‘different’ does not mean that I am a ‘monster,’ and that is so
true!
He enrolled in a new college the next semester, one closer to home with a smaller, less bustling
campus.
Armed with a diagnosis, and more importantly, a more complete understanding of
himself, Brian’s experience improved dramatically. He continued on his path toward an English

150

degree and became involved with his campus literary magazine. Educational accommodations
made coursework manageable, “I had received testing accommodations in which I had received
50% more time on exams and had a room alone to help me focus.” In his answer to my questions
about these accommodations, Brian reflected on his earlier experience, “I know that testing
accommodations would have helped me immensely when I was in high school.” He is clearly
still making sense of his past experiences, as we all are, reconciling the narratives that guide us
with new understandings of ourselves and our circumstances.
Dylan entered college with a diagnosis, a history of accommodations, and a target job
after graduation that would give their education a direction. They’d been accepted into an Asian
Studies program at a University several hours away from home and, although they were anxious,
they were hopeful that there would be some truth in their mother’s promise that college would be
different. Dylan had a friend from high school who would also be attending the school, and the
two were able to be assigned to the same dorm for their first year. Soon, “we learned that that
was a terrible idea.” Though they were friends, the two were not good roommates and came into
conflict. Dylan would have a new roommate each year in the dorms. The second-year roommate
was better, but the two were not close. “She had a boyfriend who was on the spectrum and stuff,
so she knew how to deal with people...my third and fourth one were both terrible and pretty
much never talked to me or anything.”
Academically, Dylan was doing well in the courses that interested them but struggled in
some of the more general required courses. Even with a diagnosis of autism and a history of 504
Plan accommodations in high school, Dylan felt on their own to figure out what supports were
needed and what was available. “Nobody ever told me, like what accommodation certain things
would be for, except for like note-taking and extra test time.” While the extra time in tests in

151

high school had removed some anxiety from the process, Dylan had come to understand that
their test anxiety was about something more. “Giving me all the time in the world for a test is not
the problem. it's the physical test itself that is the problem.” Being tested is inherently stressful,
we are being asked to prove ourselves, and in college it can feel as though your entire future rests
on the results. The prospect could be overwhelming, but Dylan recognized, “you can't just take
tests out of schooling.”
I agreed, in the moment, nodding my head, but as I read the words again later I realized
that I was just accepting a narrative. I thought back to my experiences in education and the claim
fit, school always came with tests or cumulative projects that served the same purpose and
carried the same pressures. As I read the words again I thought about the General Education
Board and the robber barons who created the systems of public education that Americans have
today. These men were industrialists in need of an educated labor force. The schools became
factories, transforming children into workers with the knowledge and skill to generate more
profits. Testing serves a great purpose in this system, as both a demonstration of return on
investment and as a way of measuring benchmarks of cultural and economic value.
In retrospect, many of us recognize the relative insignificance of our performance on any
individual exam in school but, in the moment, as a high school or college student a 10%
difference on an exam score can feel like life or death. Dylan felt like they had nowhere to turn
when that anxiety grew. They sought out tutors through campus tutoring programs, but as a
student in a smaller program on campus, the resources were often lacking. There were tutors
available for more popular departments, “I guess the best way to say it is like, real majors and
stuff like ...English and history but other than that, if you did anything outside of the
basics...You're pretty much just shit out of luck.”

152

As our conversation shifted to the social side of Dylan’s college experience, they said
“talking about college and stuff is still um, kind of rough for me.” The campus had a wide array
of student clubs, including several that were interesting to Dylan. “I wasn't the type to get invited
to parties or any sort of thing like that.” Clubs were a space that was structured and it would be
safe to talk about the subjects that Dylan had been bullied for in high school. They would gain a
leadership role in the school’s LGBTQIA+ club, “but I always felt really awkward...like I was
kind of ostracized and felt kind of you know, looked down upon from my other fellow officers.”
Dylan and the other officers met as freshman club members. The group worked closely
together, planning events and working to build community on the campus of their university.
“They all eventually moved in together,” but Dylan was left out. Looking back, they don’t seem
to begrudge their fellow officers' exclusion, but they recognize the moment as sending a clear
message that they were different. “You can't exactly make, you know, a room of adults try and
get along.” Even in this space that was loving and accepting of difference, they were “considered
outside.” Dylan said matter of factly:
I feel like that's a common experience among people on the spectrum, getting left out by
neurotypicals because you know, they don't want to be around you... It's hard too because
people will say like, ‘Oh, I love autism’ and ‘I love people on the spectrum.’ But, when it
comes to like, you know, talking with autistic people and stuff, they'll be like, ‘Oh, they
don't shut up about their special interests,’ ‘Oh, they're really awkward and weird,’ and
‘Oh, they don't get sarcasm.’
The very real experiences of rejection and exclusion throughout Dylan’s life had built a strong
foundation of truth to the narrative that “neurotypicals...don’t want to be around you.” The
mismatch between the ideals and actions of the neurotypical community was resolved for Dylan
by believing the actions.
The narrative that says NT community members “don’t like you” and “don’t want to be
around you'' can be a potent deterrent to engagement in community occupations. Spaces that

153

claimed to be open and welcoming were not, in Dylan’s experience. The social communication
challenges that are a diagnostic feature of autism leave autistic people “in a bad position of not
being able to talk to people as well” as NT peers. The bias of NT community members feels
insurmountable from this perspective, social withdrawal and isolation a rational reaction. For
Dylan, this meant that outside of club activities, “I pretty much just kind of stayed to myself and
watched anime. Maybe drew on occasion, maybe played some video games.”
In their fourth year at the university, Dylan still had a goal of becoming an English
teacher in Japan. They began the process of applying for a program that they’d heard about at an
anime convention 7 years before, the one that had led them to this school and a major in Asian
Studies. They’d been doing fairly well and had only a handful of required courses to complete. A
professor in her department “was notorious for not doing any disability accommodations.” Dylan
said “I got pretty lucky to avoid this teacher until then,” but they were the only option available
for one of their remaining required courses.
The details of what happened next are not very clear to me. Dylan was visibly emotional
as we talked, the experiences in that last year of college were painful, and reliving them through
retelling them revealed how close to the surface that pain was several years later. Probing further
to round out my telling of the story felt disrespectful. I checked in frequently with Dylan as they
talked, offering a break or to change the subject, but Dylan assured me each time that they were
fine to continue. Dylan remarked as I checked in after one of these emotional answers, “It’s a lot
of feelings that I didn’t realize that I haven't unpacked yet.” Even so, it didn’t feel appropriate to
press on in this context.
In that final year of college, things started to come apart for Dylan. They couldn’t
graduate without a passing grade from a professor who they experienced to be working against

154

them. Then, “I also got denied being an English teacher in Japan because of my medication and
my diagnosis.” While not necessarily surprised by the denial, “I was like, ‘Told y’all,’” the
combination of stressors became overwhelming. “Yeah, that wasn't fun. I went into a spiral.”
Dylan ended up leaving college before completing a degree. Moving back to home with their
mother, Dylan “went back to art and was like, this is what I was supposed to be doing in the
beginning yeah, but people wanted me to do other stuff nobody listened to me the first time.”
Back in college for the second time, Brian participated in poetry slams and presented an
essay at a literary conference. As he recalled the events, he remembered “feeling somewhat
embarrassed by my awkward uses of language, and lack of poetic style” during poetry slams. He
noted, “it was great to know that I had the willingness to recite ‘bad’ poetry ‘badly,’ but also
having fun simultaneously.” Reading his essay at the conference, despite being a point of pride,
was for Brian an unpleasant experience. “That event was humiliating,” he told me, “I was
reading my essay too fast, and no one knew what I was saying because I was reading my essay
aloud too quickly.” As he shared more details of the reading, it emerged that an audience
member commented on his performance. “that was a lesson that I had to learn the hard way when
people from the audience came up to me and said, ‘Hey, you talk too fast.’”
Despite these experiences, his love for the written word only deepened. He’d worked on
the editorial staff of a college literary magazine but publication remained elusive during his time
in school. A professor introduced Brian to an online portal that connected writers with publishers
seeking submissions. When Brian graduated from the school with a Bachelor’s degree, he began
checking the submission site and writing something daily. “I would wake up around 5am, drink
some coffee and tea, let the words flow, and then submit the written content to any call for
submissions that I could find.”

155

He is a contributor to a film review website where, lately, he has been posting a new
review every day, mainly classics from the 1940s and 1950s. Additionally, his morning routine
of writing and submitting has resulted in several published pieces. He has published essays on
film and life in online magazines and literary blogs. He has also made good on his difficult
experiences reciting poetry in college. “I held onto my dream of being a poet” and eventually
one of his poems would be accepted for publication. He recalls the moment with great
excitement and pride, telling me “I am incredibly grateful for penning that poetic masterpiece!”
Brian lives with his parents, in the same house he grew up in. He seems content and is
driven to continue pursuing opportunities to share his words. “I know that my writing really does
add beauty to a constantly changing world.” It is difficult to make a living as a writer, though,
and Brian has considered backup options to provide financial support. “Job discrimination is just
as bad as it sounds,” he tells me as we discuss the effects of stigma on his participation as an
adult. “I once applied to be an after-school educator at an after-school center, and I told the
interviewer that I have autism.” He recalls the interview seeming uneasy after the disclosure, “I
could see fear in her eyes when I was simply telling her the truth about my autism.”
Upon arriving back home from college, Dylan needed time to regroup and process their
experience at the university. They were able to reconnect with a handful of high school friends
still in the area and find community in “my various special interest groups.” I asked Dylan if they
found any resources or services at this time that were helpful. Outside of rebuilding the personal
support network of friends, Dylan couldn’t think of any. They said that they’d considered talk
therapy, but “it’s expensive. I'm hoping to try one of those online therapy resources that keep on
getting advertised.”

156

They continued, sharing that the larger barrier is a lack of therapists who can address
their needs. “It’s really hard to find somebody who knows autism, queer issues, and trauma. I
have to pick two of the three sometimes. If I pick something with autism, I might not get the
other two.” While exact figures are impossible to know, research estimates indicate that autistic
adults are 2-4 times more likely than NT peers to identify as LGBTQIA+ (Dewinter, De Graaf,
& Begeer, 2017; George & Stokes, 2018; Sarris, 2020). I pressed a bit more and asked if they
had participated in support groups online or in person. They said they “tried going to a talk group
about trauma in college” but they were never able to feel comfortable in the space:
I felt very weird going into it because... First of all, what has happened to me, it was very,
very bizarre compared to a lot of other people's situations... So I knew, if I talked about
my story and stuff it's gonna be weird to try and relate to everybody. But also, I feel like I
process and experience trauma differently than other people ...It's like autism and trauma
both deal with your brain and stuff. So I feel like there's something going on that is not
exactly looked into yet.
Trauma is a remarkably underexplored area in autism scholarship. Recent publications from
autistic authors and researchers embracing inclusive methodologies have begun to shed light on
the need for more research into the role of trauma in neurodivergent people’s well-being
(Benevides, et al, 2020a; 2020b; Hume & Burgess, 2020; Sweetapple, 2020).
In spite of the turmoil in their life, returning home from college meant that Dylan needed
to find paid employment. After a leaving string of unsatisfying, low wage positions:
I finally started to realize that retail jobs were not meant for me...I’d come home from
work, whether at my grocery store, my fast food job, et cetera, et cetera, I would be really
upset and frazzled and would need to pretty much just shut down for the whole day.
The constant interaction required in these jobs was doable for Dylan, but it was exhausting. They
describe environments that were “constantly changing” and recognized “having to make eye
contact and stuff is not my personal forte.”

157

As a grocery store cashier, there were moments of intense anxiety in which the demands
of the situation became overwhelming. On more than one occasion Dylan would have a
meltdown at work as a result. The meltdown, despite a colloquial sounding name, is a very
serious area of misunderstanding and concern for autistic adults (National Autistic Society,
2020). Meltdowns are an involuntary loss of control of behavior rather than a willful action. The
overwhelm can result from sensory stimulation, anxiety, or simply an overload of information
that the body and minds natural mechanisms cannot keep up with. The blogger and self-advocate
known as Autistictic (2019) writes “Meltdowns are not a behavior issue. They are not something
someone does, they are something someone experiences” (para. 4). Misinterpretation of the
agency of the individual in meltdown causes these events to be viewed as temper tantrums and
blame is assigned (Accessible Activism, 2020; Bennie, 2020; Morin, 2021; Therapist
Neurodiversity Collective, 2021).
Dylan said after a meltdown at “my last grocery store job, a lot of people didn't believe
me and just thought I was being dramatic.” The prospect of another meltdown in an environment
that judges meltdowns became an additional source of anxiety for Dylan, one that would
exacerbate the existing stress of the environment and demands for taxing social interactions.
Soon after, Dylan had the realization that retail jobs were not an ideal fit and was able to secure a
position sorting packages in a large warehouse. They have been in the job for “over a year. It’s
been a lot better.” They work with a small team, with between 1 and 3 employees assigned to
most tasks Dylan can just “sort packages and I don't really have to talk to any of the drivers don't
really have to talk to my co-workers.”
I asked Dylan about disclosure of their diagnosis at work. They are very open about
neurodivergence in life, but don't go out of their way to disclose. Coworkers on occasion raised

158

the issue of Dylan’s communication. “They’ll be like, ‘Oh, you're kind of quiet’ and ‘You don't
like to talk to people.’” The tone of the two queries from coworkers was very different in
Dylan’s telling. The first, a soft, questioning statement that seemed to indicate a desire to know
more. The second, sounded like an accusation, like a demand for explanation.
I’m like, it’s not because I’m rude, it’s because I’m autistic and I don’t know how to have
conversations. I’m a good listener. So talk to me, you could just keep on talking to me
and I'll listen and be polite and stuff, however when it comes to me talking back, I don't
really know what to say.
Most of the tasks at the warehouse require “hyperfocus,” to “make sure I’m grabbing the right
numbers or that I’m sorting them correctly...I want to make sure I’m doing it correctly.” Dylan’s
anxiety related to difficulty navigating the neurotypical social world of the workplace is greatly
reduced by the demands and expectations of the job.
Our conversation drifted toward social interactions more broadly. “I’ve always been
looking and into relationships, whether that be friendships and or romantic,” tears welled up in
their eyes, and they took a deep breath. “But it feels like I am not allowed them, you know. Like
neurotypical society doesn't want me to interact with them.” Dylan expressed frustration and was
visibly pained over neurotypical misconceptions of autistic sociality, especially when it came to
dating. Lamenting the situation, Dylan said, “A lot of people don’t think autistic people can be
queer or want any form of relationships.”
Dylan created a profile on a popular dating app. They disclose their diagnosis and
enumerate their special interests in their profile. “I just want to cut through the bullshit...if you
cannot handle me or any of my interests and stuff then, I don't want to talk to you.” Their
experience had created the narrative that most people were not trustworthy, that the risk of
judgement and misunderstanding in putting oneself out there is much greater than any potential
reward. The misalignment on something as seemingly innocuous as a special interest television

159

program, can quickly overwhelm when “so much of your talking and social skills points revolve
around that” interest. “I experienced a lot of harassment and targeting for talking about my
special interests when I was younger... So, as an adult I do still express it, like with my clothing
...but I don't talk about it.”
Dylan remains close to a small group of friends from high school. They understand each
other, and don’t feel the need to hide parts of themselves when they get together. “I flourish and
feel good and feel like I could be a little bit more of who I am and stuff as these people like the
same stuff as I do.” In their last two years at the university, Dylan had begun to reconsider the
desire to become a teacher. They had taken some theater courses and “worked in the wardrobe
department” on school productions. “I also got to be an assistant costume designer for a
production, that's when I realized that this is more what I want to do than what I was told I was
supposed to do.”
Last year, in the midst of the COVID-19 pandemic, Dylan re-enrolled in college. “I
struggled with my first time trying to go to college and now I'm trying it again to see if round
two is any better.” Their lifelong passion for art, history, and Japanese culture come together to
inspire the creation of new works and would be excellent preparation for a new goal, “I want to
go into costume design and work on movies and TV.” As we talk over Zoom, Dylan gestures
toward the edges of the screen, “I have three different buckets of wigs...movable garment racks,
one is just my cosplay, one is my regular every day, and then the other one is my Japanese
fashion.” The Japanese fashion rack is parked at the foot of their bed, so Dylan can keep a
watchful eye on their “most prized possessions.”
They are taking school more slowly this time, attending classes part time while living at
home. I asked Dylan one last time about accommodations a few weeks into their first semester

160

back. “They’re mostly just art projects and stuff, so like, I don't really know what
accommodations that would entail.” At that moment, they said things were going fine, but they
weren’t sure what to do if things changed. Left on their own to imagine and justify any potential
accommodation, Dylan couldn’t identify what could be helpful or how to access that help. “I
don't have a fine motor skill or anything physically preventing me from being able to do my
work...so I just keep on getting put into places where I'm like, I don't know what
accommodations I would need to do something for this.”
Dylan shared that they have made attempts to seek help from both professionals and their
mother, who is a special education teacher. Dylan often feels as though their perspective is
disregarded, “Like, we get into arguments about Autism Speaks. She is right about my younger
brother, she wants him to be more typical and stuff. But I'm also telling her what about me, you
know.”
Dylan says, “It's hard to talk to them about any of those issues because they feel like they
know a lot more.” In another interview they shared:
You don't really know what it's like going through life just assuming everybody is gonna
think you’re annoying and nobody wants to hear what you have to say... And you can't
understand what anybody's talking about and people purposely avoid talking to you.
This isn’t said as an appeal for pity, it is asserted as a statement of truth. A neurotypical
individual does not know what it’s like being anything other than neurotypical.
A skeptical NT reader may look at Dylan’s statement and say, “Of course I can imagine
what it’s like to assume nobody will like me.” But it’s hard to turn off your own narratives. It’s
impossible really to imagine what it feels like for Dylan’s assumption to be true. One may
imagine a moment in time, a trip to the grocery store, a walk with the dog, or a day at work. For
Dylan, and many neurodivergent adults, this is a foundational narrative, one that all other new

161

information must be reconciled against. William James (1907) said
Any idea upon which we can ride, so to speak; any idea that will carry us prosperously
from any one part of our experience to any other part, linking things satisfactorily;
working securely, simplifying, saving labor; is true for just so much, true and so far for,
true instrumentally. (p. 58)
Dylan’s assumption, “carries them prosperously” to experiences in which they are not subjected
to abuse and offers a “satisfactory” explanation for the negative interactions that may arise. That
truth is not easy to imagine without experience.
Lessons for Practice
I asked both Brian and Dylan what professionals should know, what we could be doing to
better serve autistic adults. Broadly speaking, Brian made the case that society needs to learn
much more about autism:
I honestly believe that people need to know about the signs and symptoms
for autism. Some people might regard me as inferior just because I may not necessarily
behave like normal adults without that condition, but I remind myself to not let such
people make me feel inferior without my consent.
He went on to say, “people with conditions are just as human as anyone else, and that all people
with good hearts can learn to love and respect one another to establish a more peaceful and
unified world.” Researchers, he says, should realize that “there is no cure for autism” and ought
to “encourage autism awareness within the medical field to remove stigmas associated with that
medical condition.”
Dylan pointed to a basic shortage of culturally-aware professionals, saying we need,
“more therapists that understand that there are adults with autism...that experience very complex
life situations” and more “that want to help.” Dylan said they believe they “have a bit more trust
of the science and medical community than I know most do because a lot of people have trauma
with certain therapies and things like that.” Even so, they told me when they were initially
hesitant when they received my recruitment notice. “It feels like a lot of autism research is

162

geared towards little ones,” so they were interested by my interest in the experience of adults.
“Autism is more than just an eight-year-old white boy who's really into trains and doesn't talk to
anybody,” they say with a distinct “Do I really need to keep saying this” intonation.
Dylan says from what they’ve seen, research “feels like a lot of like low-key eugenics,
but that’s more with the whole Autism Speaks sort of stuff.” As a child, Dylan had been a
participant in several studies, including a sibling genetic study through which they were
diagnosed. “I think there is a strong genetic component that you can heavily see in my family
line.” While they aren’t opposed to genetic research broadly speaking, they do urge caution, “I
just don't want information like that to, you know, be abused and taken by the wrong people and
used to hurt people.”
Discussion
I don’t know what is next for Dylan and Brian. I paint a picture here of two lives in
breach, stories that continue to unfold and encounter resistance from cultural mismatch. It’s hard
to say whether the stories will be tragedies or comedies, the ends have not been written. In either
case, autism is not the villain in this story. As for the system that left Dylan feeling “cursed to be
weird and annoying” and Brian “lost, hopeless, and humiliated,” it may not be too late for a
redemption arc. Richard Grinker (2020), a psychological anthropologist, criticized the reluctance
of the medical model to accept as valid neurodivergent meaning, writing, “when science and
medicine does not ameliorate the shame of suffering, it does so as the servant of culture” (p.
S56).
Both of these young adults are in the process of rewriting their narratives to reflect their
needs and their reality. They have both found spaces where they can be themselves, free from the
constant press to conform to a neurotypical standard. In each case, a leisure occupation has been
at the center of positive experiences of community and belonging. Dylan found art and an

163

accepting community in anime Fandom. Through this community Dylan has found friends,
romantic partners, and has expanded their participation across a range of community-based
occupations. The interests that have been a target of mockery and scorn from peers throughout
their life have now become central to Dylan’s identity. Brian’s story with film and literature is
similar. It has formed the basis of his connections to friends and a community. He can express
himself through his writing in a way that creates connections. He said that he is grateful to
discovered his passion, not only because it provides him with purpose, but because “I know that
my writing really does add beauty to a constantly changing world.”
There was a point in time, not that long ago, that one could point to a lack of resources
and a lack of knowledge as the primary barriers to improving outcomes for autistic adults.
Today, we do not lack resources. We do not lack knowledge. Instead, we lack empathy and
compassion. We lack the willingness to consider Autistic experience as valid, and to allow
Autistic people to construct their own narratives. As described in the historical analysis of autism
in the United States we “invest” in programs and interventions that force conformity to a
Western capitalist conception of personhood, in which a person’s value is derived from an
individual’s ability to generate profit with their labor. The internet and the rise of social media
have created space for more voices to be heard. Autistic and other neurodivergent people are
creating community and sharing their experiences. Researchers and clinicians far too often seem
to view these spaces as unworthy of consideration. Instead we privilege knowledge that adheres
to methods recognized as more “objective.”
Today, looking at the endurance of obscene rates of anxiety and depression in the autistic
community, I recognize a choice. We can’t bury our heads in a hole and claim ignorance. We
can’t continue to fund traumatizing and meaningless services, while claiming to be using all

164

available resources to help. At this point, the only excuse we have for not doing better is that we
aren’t willing to try. There is an African proverb that says, “Until the lion learns to write, every
story will glorify the hunter.” (Khoza-Shangase, K., & Mophosho, 2018, p. 2). The story of
neurodiversity, thus far, shows that writing alone may not be enough for most ardent “hunters” to
change their narratives. Neurodivergent adults are writing and speaking, but many refuse to
listen. The stakes of our inaction are high. Autistic adults are receiving the message that
neurotypical culture is unwilling to listen. I will end with one final quote from Dylan. They
explained the impact of their meaning and truth being ignored:
I’ve just kind of become, like more and more non-verbal...like neurotypical
society has made me be non-verbal because there’s just been too many bad people
and bad experiences in the world.

165

Chapter 8: Conclusion
“For action is indeed the sole medium of expression for ethics.”
― Jane Addams, Democracy and Social Ethics, 1902

Taken together, the lived experience of participants in the three studies represented in this
dissertation provide an understanding of the deleterious effects that result from a privileging of
neurotypicality. The findings presented are, perhaps, bleak, but they are real. I see the strength of
these participants in each of the stories shared, and the incredible work that goes into
withstanding the press of a culture that demands conformity. I’m honored to tell their stories, and
have incorporated my own to provide readers insight into my analytic processes.
The mothers’ understanding of success as a “miracle” underscores the deeper trouble
faced by the autistic community. These mothers’ experiences point to systems of care that are not
responsive to autistic priorities and meaning and systemic constraints on finding adequate
services. The narratives of autistic adults demonstrate a near complete lack of meaningful
services for AYA and existing systems and services that reinforce stigma and exacerbate distress.
No participants in the study were satisfied with the status quo of services. Both the available
range and the quality of existing services were seen as formidable barriers to maximizing quality
of life and reducing the mental health strain of exclusion and shame. Mothers were encouraged
to envision future services and scenarios that would be helpful for their children. Their
experiences show a startling, unsettling, and completely reasonable and rational mistrust of the
cultural institutions that claim to serve the autistic community.
Stories of police as a barrier to community emerged naturally in conversations
and interviews with participants. We did not ask questions about police, but again and again the
mothers and then autistic adults themselves shared experiences in which the presence or actions
of police made them feel unsafe and unwelcome on a very basic level. The sense of exclusion

166

and dismissal found in these stories echoes across the life stories of Brian and Dylan. They have
faced similar struggles throughout their lives, across contexts of education, employment, and
daily life. I am forever in debt to all of the participants in this study, but owe a special level of
gratitude and respect to the two young adults who shared their lives with me. The process was
not easy for either participant, and both were willing to share incredibly personal and painful
memories and stories. I did my best to tell these stories fully and accurately, showing the accrual
across the lifespan of narratives through repeated experiences of stigmatization and
misunderstanding. Neurotypical culture ignores autistic meaning and neurodivergent truths.
Divergence from the norm is punished by police officers in the communities, bullies at school
and work, and clinicians, researchers, educators, and parents who operate from normalizing
frameworks. Rather than easily definable and deconstructable barriers to community
engagement, the problems are pervasive and systemic. Lives are lived in a state of continual
breach, as neurodivergent individuals are left to defend their experience as valid.
A sociocultural analysis of the history of autism and service funding was necessary to
underscore the lack of objectivity in the medical framing of autism. It is not my contention that
autism does not exist, or that it is not a disability in the world we occupy. The label of autism
was created as a way to categorize and to separate those “with good cognitive potentialities”
(Kanner, 1943, p. 267) from those considered by Hans Asperger as lebensunwertes leben or “life
unworthy of life” (Sheffer, 2018). How we use the label today has been influenced by this
original proposition. Analysis of the role of philanthropic foundations in the maintenance of the
status quo was offered to counter the presumption of a steady march of progress in science. The
influence of policies and organizations created by the industrialists and capitalists is apparent in

167

the structuring of our educational, research, and practice communities. These policies ignore
individual meaning, often viewing disability and difference through a lens of economic burden.
The status quo of high rates of depression and anxiety and low ratings of eudemonic
well-being (Kamio, et al., 2013; Mason, et al., 2019; van Heijst & Geurts, 2015) are not
surprising given the day-to-day barriers created and maintained by these cultural forces. Systems
ignore autistic meaning and enforce conformity to neurotypical norms. The everyday actions of
many well-meaning service providers, educators, funders, researchers, and parents ignore autistic
meaning and prioritize normalization. In my experience, most of the folks providing autism
services and doing autism research are doing it for the right reasons and doing what they know to
be best. Unfortunately, the lived experience of participants indicate that we need to be doing
better.
Autism research should focus on the problems identified by autistic people and show
more respect for autistic experience. Occupational science and occupational therapy, specifically,
are built on a bedrock belief in the ameliorative power of occupation. Central to that power is
meaning. Without individual meaning we do not have occupation and we cannot claim to be
doing occupational science or occupational therapy. We ought to do more to be allies and
accomplices of marginalized and minoritized communities, offering our expertise and authority
to ensure that autistic people’s meaning and truth are respected and valued in our broader
community.
Over the last year and half, as I’ve been gathering data and writing this dissertation, the
world has changed. The COVID-19 pandemic laid bare the consequences of global economic
inequality (Ahmed, Ahmed, Pissarides, & Stiglitz, 2020; Patel, et al., 2020; Wrigley-Field,
2020). The videotaped murder of George Floyd by Minneapolis police officers spurred a global

168

protests against racial injustice and white supremacy (Ladabaum, 2020; Taylor, 2020; Weine, et
al., 2020). Protestors demanded justice for the murders by police of Floyd and of Breonna
Taylor. In the year following George Floyd’s murder, the list of victims of excessive use of force
by our police has grown to include Andres Guardado, Dijon Kizzee, Julian Lewis, Manuel Ellis,
David McAtee, Sean Monterossa, Andre Hill, Jonathan Price, Rayshard Brooks, Walter Wallace,
Daniel Prude, Adam Toledo, Ronald Greene, Duante Wright, Ma’Khia Bryant, Andre Brown,
Mario Gonzalez, Iremamber Skycap, Anthony Thompson, and others whose names we may
never know.
Bruner (1990) argued that “personhood is a constituent concept of our folk psychology
and as Charles Taylor notes it is attributed selectively often withheld from those in an out group”
(p. 39). The systemic violence against Black and Latinx people indicates a withholding of
personhood, a neglect of society as a whole to consider the meaning of minority experience.
Police interactions with neurodivergent people over the same time frame show that the injustices
perpetrated against members of historically marginalized communities are not an aberration, they
are a feature of a system that prioritizes capital over humanity, profits over health. Since the
murder of George Floyd, neurodivergent individuals have also been on the receiving end of
unjust treatment from police.
Police responding to mental health welfare calls shot and injured Linden Cameron, a 13-
year-old boy in Salt Lake City, and 25-year-old Isaias Cervantes in Los Angeles, both of whom
were autistic. In Vacaville, CA, police searching for a “suspicious person” arrested and beat an
autistic 17-year-old named Preston Wolf on the street outside his family home. The parents of an
unnamed 16-year-old filed a lawsuit against Westland, Michigan police after officer Kristopher
Landis beat the teenager with a metal club in an act that the Westland Police defined as “lethal

169

use of force.” In an incident reminiscent of the George Floyd murder, 16-year-old Eric Parsa was
asphyxiated and killed by police after a meltdown in a Louisiana shopping mall.
We claim equality of opportunity and a cultural belief in justice, but the experience of
participants in this dissertation shows that we have built communities in which neurodivergent
people feel unwelcome and unsafe. Social opportunities and access to services are curtailed by
worries of violence at the hands of the police. We have systems of legally required
accommodations to ensure access to educational opportunities, but we require an individual to
jump through hoops, perform their disability, and justify the validity of their experience before
granting access. Both Dylan and Brian described being unsure of the available range of
accommodations and encountered resistance from educators in all stages of their academic
careers.
Implications for Occupational Science and Therapy
We are in a moment right now that demands something new, or maybe more accurately a
return to something old. The roots of our field are found in the social justice movements of the
early 20
th
century. The pragmatists and moral treatment adherents that founded occupational
therapy recognized the necessity of fighting for social change. They were fighting the
Rockefellers and Carnegies, and demanding accountability, better living conditions, and a more
just and equitable distribution of resources and wealth. It was a radical and revolutionary thought
that Adolph Meyer (1922) said is at the heart of occupational therapy:
The most important factor in the progress lay undoubtedly in the newer conceptions of
mental problems as problems of living, and not merely diseases of a structural and toxic
nature on the one hand or of a final lasting constitutional disorder on the other. ( p. 82)
This recognition of a cultural root to disease and disability has ebbed and flowed throughout the
history of occupational therapy practice. Mary Reilly (1963) said that the discipline was “on an
endless treadmill of survival,” balancing between philosophical ideals and the press toward

170

medical reductionism that is a seemingly necessary component of membership in the medical
community.
Occupational scientists have contributed to our understanding of the impact of culture on
autism. Studies have shown disparities in service experience for autistic children related to racial
and ethnic categories (Angell & Solomon, 2017; Como, Stein Duker, Polido, & Cermak, 2020;
Park, 2008; Solomon, Angell, Yin, & Lawlor, 2015). Cultural differences have also been noted
in occupational science and therapy literature related to sensory processing and autism (Caron,
Schaaf, Benevides, & Gal, 2012). Several publications have argued the influence of culture on
autistic occupational engagement more broadly (Angell, Lawlor, & Solomon, 2015; Haertl,
Callahan, Markovics, & Strouf Sheppard, 2013; Solomon & Lawlor, 2010; 2018). Occupational
therapists and scientists have contributed to the growing body of phenomenological (Bagatell,
2010; Lawlor, 2010; Lawlor & Solomon, 2017; Solomon & Bagatell, 2010) and critical study of
neurodivergence (Iwama, Thomson, & Macdonald, 2011). The May/June 2021 issue of the
American Journal of Occupational Therapy is a special issue on neurodiversity, a concept which
the issue editors argue “can and should lead clinicians and other providers of services to
challenge the status quo. That status quo often reflects an outdated deficit model, which
emphasizes actions to ‘fix’ disabilities and conform to normative expectations” (Kornblau &
Robertson, 2021). Though our discipline has contributed to the development of knowledge
related to autism, more work is needed to ensure the meaning of neurodivergent individuals is
recognized and respected.
Implications and Future Research
Across the parent data from the AIC and ACN research projects, there are many themes
yet to be explored fully. I have seen a perspective shift in mothers as their children age. It is
represented in this dissertation to some extent, but a more comprehensive look at the narrative

171

reframing of autism in parents would be a worthwhile pursuit. In the Autistic community, there
is a widespread tension between parent and Autistic perspectives. In our sample, it seems that
over time the mothers become more accepting of a Neurodiversity perspective and increasingly
aware of the disparities between the goals of research and services and their outcomes. Mothers
show more interest in meaning and quality of life than in normalizing and meeting traditional
benchmarks of success and independence.
The available data, also presents a tension in the definition of words that are core to the
practice of occupational therapy and occupational science. Specifically, the accounts of mothers
in the ACN group calls into question the nature of “work” as conceived by research and services
systems. Work is one of the core domains of occupation. Defined in the Occupational Therapy
Practice Framework, 4th Edition (2020), “Labor or exertion related to the development,
production, delivery, or management of objects or services; benefits may be financial or
nonfinancial (e.g., social connectedness, contributions to society, structure and routine to daily
life)” (p. 33). Mothers of autistic adults make a strong distinction between work that is
meaningful and work that is done for financial reward or to conform to cultural expectation.
Occupational science ought to better distinguish between the contexts of “work” and “labor,” the
latter being the exchange of an individual’s mental and physical efforts for financial or material
compensation. It becomes problematic to maintain the belief in the ameliorating effects of
occupational engagement in the domain of labor based on the experiences of this community.
Discussion
I became an occupational therapist because I had seen something in the way school-based
OTs worked with autistic students that was different from what I’d come to expect. I saw
therapists who were working with the students that everyone else seemed to be working against.
As I got to know autistic adults, I recognized that the services and supports that I assumed

172

existed in fact did not. I decided that OT would provide new options for my future, more
opportunities to contribute and begin to close the gaps in available services. As a research
assistant with Dr. Lawlor, I had the chance to explore a different way of contributing, one that
potentially could have a more wide-reaching impact. I was able to delve into a rich collection of
data from the Autism in an Urban Context (PI: Lawlor & Solomon) and appreciate the
immensity of the barriers to sufficient services.
I began to recognize the gaps in service as gaps in evidence. My plan to study barriers
was an effort to recognize where my contribution to building a base of evidence can best be
made. This dissertation was to be a stepping stone in the path of translational research.
Translational research is a “process of turning observations in the laboratory, clinic and
community into interventions that improve the health of individuals and the public — from
diagnostics and therapeutics to medical procedures and behavioral changes” (NIH-NCATS,
2021). As the 2000s became the 2010s, translational research emerged as the method of inquiry
preferred by the National Institutes of Health and other research funding “foundations, industry,
disease-related organizations, and individual hospitals and health systems” (Woolf, 2008, p.
211).
As I put together my dissertation proposal, I considered the implications of my choices
on the development of a line of research and ability to generate publications that would provide
the background data for a future grant proposal. My idea was to identify barriers that could be
the focus of interventions that would be piloted and eventually rigorously studied. In my mind,
the biggest barrier to services was a lack of sufficient evidence for reimbursement. Translational
research offered a path to get from the giant service gaps that are the norm to a future with a
wider range of Evidence-Based Practice.

173

The mothers of the ACN group are tired of waiting for things to change. In one meeting,
Deborah shared a story of a negative service experience that occurred 10 years ago when Ted
was 14 years old. Ella, another mother in the group, nodded her head and responded, “the most
frustrating part is...my daughter is 14 and in those 10 years nobody figured anything out.” We
owe more to each other, and should not let another 10 years go by without real progress. The
mothers recognize the challenges their children will face because they are autistic, but their
experience demands a distinction be drawn between the specific deficits of autism and the toxic
influence of hegemonic neurotypicality. Deborah said:
You know it’s more on us...to help provide him with a better life than to impose on him
these things that we impose on neurotypical people….He has a right to have a good
life...and in our society we can provide good lives.

174

References
Accessible Activism. (2020). How to Spot & Support An Autistic Meltdown. Accessible
Activism. https://docs.google.com/document/d/1sGRvBNna3psktS7CkFpvzC-
deMJWYUunO4e2MRM6uAU/edit#heading=h.90yrhqz6nlmf.
Adams, K. B., Sanders, S., & Auth, E. A. (2004). Loneliness and depression in independent
living retirement communities: Risk and resilience factors. Aging & mental health, 8(6),
475-485.
Adamson, P. B. (1991). Some Comments on the Origin of the Police. Police Stud.: Int'l Rev.
Police Dev., 14, 1.
Ahmed, F., Ahmed, N. E., Pissarides, C., & Stiglitz, J. (2020). Why inequality could spread
COVID-19. The Lancet Public Health, 5(5), e240.
AJ Drexel Autism Institute. (n.d.). Health Care Transitions Research Network (HCT-RN) for
Youth and Young Adults with Autism Spectrum Disorders. Retrieved March 20, 2017,
from http://www.autismtransition.net/
Aldrich, R., & Marterella, A. (2014). Community-engaged research: A path for occupational
science in the changing university landscape. Journal of Occupational Science, 21(2),
210-225.
Allely, C. S., Wilson, P., Minnis, H., Thompson, L., Yaksic, E., & Gillberg, C. (2017). Violence
is rare in autism: when it does occur, is it sometimes extreme?. The Journal of
psychology, 151(1), 49-68.
Alliance for Charitable Reform. (2015, September 01). Philanthropic achievement of the week:
Painting a target on autism. Retrieved April 14, 2021, from http://acreform.org/good-
giving/philanthropic_achievement_of_the_week/
Allosso, D. (2015). American environmental history. United States: Minnesota Libraries
Publishing Project.
Alpert, G. P. (2016). Toward a national database of officer-involved shootings. Criminology &
Pub. Pol'y, 15, 237.
American Occupational Therapy Association. (2020). Occupational therapy practice framework:
Domain and process.
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders
(5th ed.). Arlington, VA: American Psychiatric Publishing.
Anderson, A. (2015). Snake oil, hustlers and hambones: the American medicine show.
McFarland.
Anderson, C., Law, J. K., Daniels, A., Rice, C., Mandell, D. S., Hagopian, L., & Law, P. A.
(2012). Occurrence and family impact of elopement in children with autism spectrum
disorders. Pediatrics, 130(5), 870-877.

175

Anderson, C., Lupfer, A., & Shattuck, P. T. (2018). Barriers to Receipt of Services for Young
Adults With Autism. Pediatrics, 141(Supplement 4), S300-S305.
Andrews, M., Squire, C., & Tamboukou, M. (Eds.). (2013). Doing narrative research. Sage.
Angell, A. M., & Solomon, O. (2017). ‘If I was a different ethnicity, would she treat me the
same?’: Latino parents’ experiences obtaining autism services. Disability & society,
32(8), 1142-1164.
Angell, A., Lawlor, M., & Solomon, O. (2015). Health Care Disparities and Autism: Analytic
Approaches to Understanding Families' Experiences in Their Everyday Lives. American
Journal of Occupational Therapy, 69.
Angelou, M., & Caged Bird Legacy LLC. (2018, August 12). "Do the best you can until you
know better. then when you know better, do better." Retrieved May 11, 2021, from
https://twitter.com/DrMayaAngelou/status/1028663286512930817
Apoorva Mandavilli, S. (2016, October 28). How 'Shock Therapy' Is Saving Some Children With
Autism. The Atlantic. https://www.theatlantic.com/health/archive/2016/10/how-shock-
therapy-is-saving-some-children-with-autism/505448/.
Asaba, E., & Suarez-Balcazar, Y. (2018). Participatory research: A promising approach to
promote meaningful engagement. Scandinavian Journal of Occupational Therapy, 25(5),
309–312. https://doi.org/10.1080/11038128.2018.1541224
ASAN. (2009, September 23). Horrific Autism Speaks "I am Autism" ad transcript. Autistic Self
Advocacy Network. https://autisticadvocacy.org/2009/09/horrific-autism-speaks-i-am-
autism-ad-transcript/.
Asatryan, K. (2016). Stop being lonely: Three simple steps to developing close friendships and
deep relationships. New World Library.
Ask an Autistic. (2021, April 14). The great BIG ABA Opposition resource list. Retrieved April
16, 2021, from https://stopabasupportautistics.home.blog/2019/08/11/the-great-big-aba-
opposition-resource-list/
Asperger, H. (1991). 'Autistic psychopathy' in childhood (U. Frith, Trans.). In U. Frith (Ed.),
Autism and Asperger syndrome(pp. 37-92). (This chapter is an annotated translation of a
German article by Hans Asperger that was published in "Archiv für Psychiatrie und
Nervenkrankenheiten," 1944, 117, 76-136. The original also appeared in
"Heilpädagogik," Vienna: Springer-Verlag, 1952)New York, NY, US: Cambridge
University Press
Autism Speaks. (2019). Health insurance coverage for autism. Retrieved May 07, 2021, from
https://www.autismspeaks.org/health-insurance-coverage-autism
Autism Speaks. (2021). Annual Report April 2019 - March 2020 (Rep.). New York, NY: Autism
Speaks.

176

Autism Speaks. (2021). Meltdowns (Tantrums). Autism Speaks.
https://www.autismspeaks.org/meltdowns-tantrums.
Autistictic. (2019, March 23). THE 3 STAGE MODEL OF MELTDOWNS. AUTISTICTIC.
https://autistictic.com/2019/03/23/meltdowns-the-three-stage-model/.
Autistictic. (2021, May 24). Yes, I understand this.Yes it is often true.No, as a general statement
like this it's neither true nor harmless.As an autistic person I do stuff over and over again
that I truly am sorry for, that I truly try to change, but that my fucking brain doesn't let me
change. https://t.co/wc8ro0LarJ. Twitter.
https://twitter.com/autistictic/status/1396821444244475906.
Ayres, A. J. (1969). Deficits in sensory integration in educationally handicapped children.
Journal of Learning Disabilities, 2(3), 160-168.
Ayres, A. J. (1972a). Improving academic scores through sensory integration. Journal of
Learning Disabilities, 5(6), 338-343.
Ayres, A. J. (1972b). Types of sensory integrative dysfunction among disabled learners.
American Journal of Occupational Therapy.
Azerrad, D. (2016). How Equal Should Opportunities Be? National Affairs.
https://www.nationalaffairs.com/publications/detail/how-equal-should-opportunities-be.
Bagatell, N. (2010). From cure to community: Transforming notions of autism. Journal of the
Society for Psychological Anthropology, 38(1), 33-55. https://doi.org/10.1111/j.1548-
1352.2009.01080.x
Bagatell, N. (2010). From cure to community: Transforming notions of autism. Ethos, 38(1), 33-
55.
Baio, J., Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J., Warren, Z., ... & Durkin,
M. S. (2018). Prevalence of autism spectrum disorder among children aged 8 years—
Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States,
2014. MMWR Surveillance Summaries, 67(6), 1-23. doi:
http://dx.doi.org/10.15585/mmwr.ss6706a1
Baranek, G. T., David, F. J., Poe, M. D., Stone, W. L., & Watson, L. R. (2006). Sensory
Experiences Questionnaire: Discriminating sensory features in young children with
autism, developmental delays, and typical development. Journal of Child Psychology and
Psychiatry, 47(6), 591-601. doi: 10.1111/j.1469-7610.2005.01546.x. PMID: 16712636
Baranek, G. T., Frank, G., & Aldrich, R. M. (2020). Meliorism and knowledge mobilization:
Strategies for occupational science research and practice. Journal of Occupational
Science, 1-13.
Barg, F. K., Huss-Ashmore, R., Wittink, M. N., Murray, G. F., Bogner, H. R., & Gallo, J. J.
(2006). A mixed-methods approach to understanding loneliness and depression in older
adults. The Journals of Gerontology Series B: Psychological Sciences and Social
Sciences, 61(6), S329-S339.

177

Barkan, J. (2013). Big philanthropy vs. democracy: The Plutocrats go to school. Dissent, 60(4),
47-54.
Bascom, J. (2012). Loud hands: Autistic people, speaking. Washington DC: Autism Self-
Advocacy Network Press.
Bauminger, N., Shulman, C., & Agam, G. (2003). Peer interaction and loneliness in high-
functioning children with autism. Journal of autism and developmental disorders, 33(5),
489-507.
Bauschatz, J. (2013). Law and enforcement in Ptolemaic Egypt. Cambridge University Press.
Benevides, T. W., Shore, S. M., Andresen, M. L., Caplan, R., Cook, B., Gassner, D. L.,... &
Murphy, L. E. (2020b). Interventions to address health outcomes among autistic adults: A
systematic review. Autism, 24(6):1345-1359. doi:10.1177/1362361320913664
Benevides, T. W., Shore, S. M., Palmer, K., Duncan, P., Plank, A., Andresen, M. L.,... &
Morgan, L. (2020a). Listening to the autistic voice: Mental health priorities to guide
research and practice in autism from a stakeholder-driven project. Autism, 24(4), 822-
833. https://doi.org/10.1177/1362361320908410
Benevides, T., & Shore, S. (2020). Engagement and Compensation: Developing Guidelines for
Researchers to Inform Authentic Research With Autistic Adults. American Journal of
Occupational Therapy, 74(4_Supplement_1), 7411510278p1-7411510278p1.
Bennett, M., Webster, A. A., Goodall, E., & Rowland, S. (2018). Exploring the Identity of
Autistic Individuals: Reconstructing the Autism Epidemic Myth. In Life on the Autism
Spectrum (pp. 17-35). Springer, Singapore.
Bennie, M. (2020, November 16). Tantrum vs Autistic Meltdown: What Is The Difference?
Autism Awareness. https://autismawarenesscentre.com/what-is-the-difference-between-a-
tantrum-and-an-autistic-meltdown/.
Bettelheim, Bruno (1967). The empty fortress : infantile autism and the birth of the self. Free
Press. ISBN 0029031400.
Biklen, D., & Cardinal, D. N. (Eds.). (1997). Special education series.Contested words,
contested science: Unraveling the facilitated communication controversy. Teachers
College Press.
Biklen, D., & Kliewer, C. (2006). Constructing competence: Autism, voice and the
‘disordered’body. International Journal of Inclusive Education, 10(02-03), 169-188.
Blanche, E. I., Diaz, J., Barretto, T., & Cermak, S. A. (2015). Caregiving experiences of Latino
families with children with autism spectrum disorder. American Journal of Occupational
Therapy, 69(5), 6905185010p1-6905185010p11.
Bleicher, J. (2017). Contemporary hermeneutics: Hermeneutics as method, philosophy and
critique (Vol. 2). Routledge.

178

Bobb, V. (2019). Black girls and autism. Girls and Autism: Educational, Family and Personal
Perspectives, 36.
Bonsall, A. (2012). An examination of the pairing between narrative and occupational science.
Scandinavian Journal of Occupational Therapy, 19(1), 92-103.
Boren, R. (2021, April 28). Interrogating Normal: Autism Social Skills Training at the Margins
of a Social Fiction. Ryan Boren. https://boren.blog/2021/04/28/interrogating-normal-
autism-social-skills-training-at-the-margins-of-a-social-fiction/.
Boren, R. (2021, April 9). "Care is an organizational structure needed to keep our nation
running." "Care work makes all other work possible.". Ryan Boren.
https://boren.blog/2021/04/09/care-is-an-organizational-structure-needed-to-keep-our-
nation-running-care-work-makes-all-other-work-possible/.
Bornstein, E. (2006). No Return: A Brief Typology of Philanthropy and the Sacred in New
Delhi. The Practice of Altruism: Caring and Religion in Global Perspective, 165-179.
Botash, A. S., Babuts, D., Mitchell, N., O'Hara, M., Lynch, L., & Manuel, J. (1994). Evaluations
of children who have disclosed sexual abuse via facilitated communication. Archives of
pediatrics & adolescent medicine, 148(12), 1282-1287.
Bourdieu, P. (1989). Social space and symbolic power. Sociological theory, 7(1), 14-25.
Bradshaw, T. K. (2007). Theories of poverty and anti-poverty programs in community
development. Community Development, 38(1), 7-25.
Breines, E. (1987). Pragmatism as a foundation for occupational therapy curricula. American
Journal of Occupational Therapy, 41(8), 522-525.
Brito, C., & DiLorenzo, A. (2016, October 25). 'It's a miracle': BOYS, 1 and 3, survive 100-foot
fall OFF NJ bridge During Father's MURDER-SUICIDE ATTEMPT. Retrieved April 14,
2021, from https://pix11.com/news/local-news/new-jersey/its-a-miracle-boys-2-and-4-
survive-fall-off-nj-bridge-during-fathers-murder-suicide-attempt/
Brown, K. R., Peña, E. V., & Rankin, S. (2017). Unwanted sexual contact: Students with autism
and other disabilities at greater risk. Journal of College Student Development, 58(5), 771-
776.
Brown, L. (2018, October 11). The neurodiversity movements needs its shoes off, and fists up.
Autistic Hoya - A blog by Lydia X. Z. Brown.
https://www.autistichoya.com/2018/10/neurodiversity-needs-shoes-off-fists-up.html.
Brown, L. X. Z. (2017, July). Autistic Hoya - A blog by Lydia X. Z. Brown.
https://www.autistichoya.com/2011/11/.
Brown-Lavoie, S. M., Viecili, M. A., & Weiss, J. A. (2014). Sexual knowledge and victimization
in adults with autism spectrum disorders. Journal of autism and developmental disorders,
44(9), 2185-2196.

179

Bruner, E. M. (1986). The anthropology of experience. University of Illinois Press.
Bruner, J. (1990). Acts of meaning. Harvard university press.
Bruner, J. (1991). The narrative construction of reality. Critical inquiry, 18(1), 1-21.
Bruner, J. (2010). Narrative, culture, and mind. Telling stories: Language, narrative, and social
life, 45-49.
Buchanan, L., Bui, Q., & Patel, J. K. (2020, July 3). Black Lives Matter May Be the Largest
Movement in U.S. History. The New York Times.
https://www.nytimes.com/interactive/2020/07/03/us/george-floyd-protests-crowd-
size.html.
Buck v. Bell, 274 US 200 Https://www.courtlistener.com/opinion/101076/buck-v-bell/ (1927).
Burnett, T. (2014). What Is Scientism?. American Association for the Advancement of Science,
accessed, 13.
Burt, S. (2020, November 25). Family of autistic teen shot by officer is suing SLCPD. KSTU.
https://www.fox13now.com/news/local-news/family-of-autistic-teen-shot-by-officer-is-
suing-slcpd.
Carnegie, A. (1889). The gospel of wealth. Garden City, NY.
Caron, K. G., Schaaf, R. C., Benevides, T. W., & Gal, E. (2012). Cross-cultural comparison of
sensory behaviors in children with autism. American Journal of Occupational Therapy,
66(5), e77-e80.
Case-Smith, J., Weaver, L. L., & Fristad, M. A. (2015). A systematic review of sensory
processing interventions for children with autism spectrum disorders. Autism, 19(2), 133-
148. doi: 10.1177/1362361313517762. PMID: 24477447
Cassidy, S. A., Bradley, L., Bowen, E., Wigham, S., & Rodgers, J. (2018). Measurement
properties of tools used to assess depression in adults with and without autism spectrum
conditions: A systematic review. Autism Research.
Cerbone, D. R. (2014). Understanding phenomenology. Routledge.
Cevik, K. (2019, September 14). Distorting deej: Deconstructing a misinformed literature
review. Retrieved May 11, 2021, from
http://www.thinkingautismguide.com/2019/09/distorting-deej-deconstructing.html
Challis, N., & Dewey, H. W. (1974). The blessed fools of old Russia. Jahrbücher für Geschichte
Osteuropas, (H. 1), 1-11.
Chavez, N., & Hassan, C. (2020, November 11). Virginia governor Conditionally pardons a
young black man with autism who was serving 10 years for a car crash. Retrieved April
30, 2021, from https://www.cnn.com/2020/11/10/us/matthew-rushin-virginia-
pardon/index.html

180

Chen, Y. L., & Patten, K. (2021). Shifting Focus From Impairment to Inclusion: Expanding
Occupational Therapy for Neurodivergent Students to Address School Environments.
American Journal of Occupational Therapy, 75(3), 7503347010p1-7503347010p7.
Choi, K. R., Knight, E. A., Stein, B. D., & Coleman, K. J. (2020). Autism insurance mandates in
the US: Comparison of mandated commercial insurance benefits across states. Maternal
and child health journal, 24(7), 894-900.
Chown, N. (2010). ‘Do you have any difficulties that I may not be aware of?’A study of autism
awareness and understanding in the UK police service. International Journal of Police
Science & Management, 12(2), 256-273.
Chown, N. (2014). More on the ontological status of autism and double empathy. Disability &
Society, 29(10), 1672-1676.
Christiansen, A., Minich, N. M., & Clark, M. (2021). Pilot Survey: Police Understanding of
Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 1-8.
Clandinin, D. J. (2006). Narrative inquiry: A methodology for studying lived experience.
Research studies in music education, 27(1), 44-54.
Claridge, J. A., & Fabian, T. C. (2005). History and development of evidence-based medicine.
World journal of surgery, 29(5), 547-553.
Clark, B., Foster, J. B., & York, R. (2007). The critique of intelligent design: Epicurus, Marx,
Darwin, and Freud and the materialist defense of science. Theory and Society, 36(6), 515-
546.
Clark, F. (2012). Mary Reilly, 1916-2012. Retrieved May 04, 2021, from
https://chan.usc.edu/news-and-events/magazine/spring2012/mary-reilly-1916-2012
Clark, F. A., Parham, D., Carlson, M. E., Frank, G., Jackson, J., Pierce, D., ... & Zemke, R.
(1991). Occupational science: Academic innovation in the service of occupational
therapy’s future. American Journal of Occupational Therapy, 45(4), 300-310.
Clark, M., & Adams, D. (2020). Listening to parents to understand their priorities for autism
research. PloS one, 15(8), e0237376.
Como, D. H., Stein Duker, L. I., Polido, J. C., & Cermak, S. A. (2021). Oral Health and Autism
Spectrum Disorders: A Unique Collaboration between Dentistry and Occupational
Therapy. International journal of environmental research and public health, 18(1), 135.
Cooper, K., Smith, L. G., & Russell, A. (2017). Social identity, self-esteem, and mental health in
autism. European Journal of Social Psychology, 47(7), 844-854.
Copenhaver, A., Denney, A. S., & Rapp, V. (2020). Police cadet general and interactional
knowledge of persons with autism spectrum disorders (ASDs). Policing: An International
Journal.
Cordner, G. (2014). Community policing. The Oxford handbook of police and policing, 148-171.

181

Crane, L., Adams, F., Harper, G., Welch, J., & Pellicano, E. (2018). ‘Something needs to
change’: Mental health experiences of young autistic adults in England. Autism,
1362361318757048.
Crane, L., Davidson, I., Prosser, R., & Pellicano, E. (2019). Understanding psychiatrists'
knowledge, attitudes and experiences in identifying and supporting their patients on the
autism spectrum: online survey. BJPsych open, 5(3).
Crane, L., Wilcock, R., Maras, K. L., Chui, W., Marti-Sanchez, C., & Henry, L. A. (2020). Mock
juror perceptions of child witnesses on the autism spectrum: The impact of providing
diagnostic labels and information about autism. Journal of Autism and Developmental
Disorders, 50(5), 1509-1519.
Crawford, E., Turpin, M., Nayar, S., Steel, E., & Durand, J. L. (2016). The structural-personal
interaction: Occupational deprivation and asylum seekers in Australia. Journal of
Occupational Science, 23(3), 321-338.
Crenshaw, K. W. (2017). On intersectionality: Essential writings. The New Press.
Creswell, J. W., & Miller, D. L. (2000). Determining validity in qualitative inquiry. Theory into
practice, 39(3), 124-130.
Croen, L. A., Zerbo, O., Qian, Y., Massolo, M. L., Rich, S., Sidney, S., & Kripke, C. (2015). The
health status of adults on the autism spectrum. Autism, 19(7), 814-823.
Cutchin, M. P. (2004). Using Deweyan philosophy to rename and reframe adaptation-to-
environment. American Journal of Occupational Therapy, 58(3), 303-312.
Cutchin, M. P., Aldrich, R. M., Bailliard, A. L., & Coppola, S. (2008). Action theories for
occupational science: The contributions of Dewey and Bourdieu. Journal of
Occupational Science, 15(3), 157-165.
Czech, H. (2018). Hans Asperger, national socialism, and “race hygiene” in Nazi-era Vienna.
Molecular autism, 9(1), 1-43.
Darrisaw, M. (2021, March 29). How to Find the Rachel to Your Monica-As an Adult. Oprah
Daily. https://www.oprahdaily.com/life/relationships-love/a26962744/how-to-make-
friends-as-an-adult/.
Davis, L. (2021, March 31). Matthew Rushin released from prison. Retrieved April 30, 2021,
from https://www.yahoo.com/gma/matthew-rushin-released-prison-220458650.html
Davis, M. D. (2006). Stimulation, sustenance, subversion: the General Education Board and
Southern US public education. Journal of educational administration and history, 38(3),
313-322.
De Giacomo, A., Craig, F., Terenzio, V., Coppola, A., Campa, M. G., & Passeri, G. (2016).
Aggressive behaviors and verbal communication skills in autism spectrum
disorders. Global pediatric health, 3, 2333794X16644360.

182

Denzin, N. K. (1978). The work of little children. Toward a Sociology of Education, 12, 316.
Des Roches Rosa, S. (2018, February 8). When The Progressive Media Sells Out Autistic
People. Medium. https://medium.com/the-establishment/how-the-progressive-media-
sells-out-autistic-people-f1cc44f7c336.
Descartes, R., & Cottingham, J. (1643). Meditations 1 & 2. In MEDITATIONS ON FIRST
PHILOSOPHY (pp. 1–9). essay, Cambridge University Press.
https://rintintin.colorado.edu/~vancecd/phil201/Meditations.pdf.
Devine, S. (2018, January 10). Health Care and the American Medical Profession, 1830-1880.
The Journal of the Civil War Era.
https://www.journalofthecivilwarera.org/2017/07/health-care-american-medical-
profession-1830-1880/.
DeVita-Raeburn, E.S. (2016, August 12). Is the Most Common Therapy for Autism Cruel? The
Atlantic. https://www.theatlantic.com/health/archive/2016/08/aba-autism-
controversy/495272/.
Dewey, J. (1916). Democracy and education by John Dewey. Project Gutenberg.
Dewinter, J., De Graaf, H., & Begeer, S. (2017). Sexual orientation, gender identity, and
romantic relationships in adolescents and adults with autism spectrum disorder. Journal
of Autism and Developmental Disorders, 47(9), 2927-2934.
Dickerson, P., Rae, J., Stribling, P., Dautenhahn, K., & Werry, I. (2005). Autistic children’s co-
ordination of gaze and talk: Re-examining the ‘asocial’autist. In Applying conversation
analysis (pp. 19-37). Palgrave Macmillan, London.
Donato, C., Spencer, E., & Arthur-Kelly, M. (2018). A critical synthesis of barriers and
facilitators to the use of AAC by children with autism spectrum disorder and their
communication partners. Augmentative and Alternative Communication, 34(3), 242-253.)
Donvan, J. J., & Zucker, C. B. (2016). In a different key: The story of autism. Broadway Books.
Donvan, J., & Zucker, C. (2016). In a different key: The story of autism. Crown.
Douglas, P. N. (2013). As if you have a choice: Autism mothers and the remaking of the human.
Health, Culture and Society, 5(1), 167-181.
Duffy, T. P. (2011). The Flexner report―100 years later. The Yale journal of biology and
medicine, 84(3), 269.
Dupont, R., & Cochran, S. (2000). Police response to mental health emergencies-Barriers to
change. JOURNAL-AMERICAN ACADEMY OF PSYCHIATRY AND THE LAW, 28, 338-
344.
Eck, D. L. (2013). The religious gift: Hindu, Buddhist, and Jain perspectives on Dana. social
research, 80(2), 359-379.

183

Elfrink, T. (2019, June 18). Jury finds cop who shot man with arms raised was negligent but
dismisses felonies. Retrieved April 30, 2021, from
https://www.washingtonpost.com/nation/2019/06/18/jury-finds-cop-who-shot-man-with-
arms-raised-was-negligent-dismisses-felonies/
Ellenbogen, M. A., Schwartzman, A. E., Stewart, J., & Walker, C. D. (2002). Stress and selective
attention: The interplay of mood, cortisol levels, and emotional information processing.
Psychophysiology, 39(6), 723-732.
Emerson, R. M., Fretz, R. I., & Shaw, L. L. (2011). Writing ethnographic fieldnotes. University of
Chicago Press.
Erdely, S. R. (2014, February 26). How an Autistic Teen Got Targeted By an Undercover Cop.
Retrieved April 24, 2018, from https://www.rollingstone.com/culture/news/the-
entrapment-of-jesse-snodgrass-20140226
Etymonline. (n.d.). phenomenology (n.). Index.
https://www.etymonline.com/word/phenomenology
Farmer, T., Robinson, K., Elliott, S. J., & Eyles, J. (2006). Developing and implementing a
triangulation protocol for qualitative health research. Qualitative health research, 16(3),
377-394.
Fesmire, S. (2019). Ethics for Moral Fundamentalists. The Journal of School & Society, 6(2),
66-69.
Finoh, M. (2020, September 18). Allegations of Forced Sterilization in ICE Detention Evoke a
Long Legacy of Eugenics in the United States. Center for Constitutional Rights.
https://ccrjustice.org/home/blog/2020/09/18/allegations-forced-sterilization-ice-
detention-evoke-long-legacy-eugenics.
Flexner, A. (1910). (rep.). Medical Education in the United States and Canada (pp. 1–364). New
York, NY: Carnegie Foundation.
Flexner, A. (1912). Medical education in Europe: a report to the Carnegie Foundation for the
Advancement of Teaching (No. 6). Carnegie Foundation for the advancement of teaching.
Flick, U. (2004). Triangulation in qualitative research. A companion to qualitative research, 3,
178-183.
Floríndez, L. I., & Floríndez, D. C. (2018). Gangs in Los Angeles: Limited occupational
possibilities for Latino male adolescents. Journal of Occupational Science, 25(2), 191-
199.
Fombonne, E., & Zuckerman, K. E. (2021). Clinical profiles of Black and White children
referred for autism diagnosis. Journal of Autism and Developmental Disorders, 1-11.
Fontil, L., & Petrakos, H. H. (2015). Transition to school: The experiences of Canadian and
immigrant families of children with autism spectrum disorders. Psychology in the
Schools, 52(8), 773-788.

184

Foster, C. A. (2019). Deej-a Vu: Documentary revisits facilitated communication pseudoscience.
Behavioral Interventions, 34(4), 577-586.
Foucault, M (1977a) Discipline and Punish: The Birth of the Prison, New York: Pantheon
Foucault, M. (1961/2003). Madness and civilization. Routledge.
Foxx, R. M. (2008). Applied behavior analysis treatment of autism: The state of the art. Child
and adolescent psychiatric clinics of North America, 17(4), 821-834.
Fraser, H. (2004). Doing narrative research: Analysing personal stories line by line. Qualitative
social work, 3(2), 179-201.
Gadamer, H. G. (1975). Hermeneutics and social science. Cultural hermeneutics, 2(4), 307-316.
Galli, C., Krieder, R., & Ross, B. (2016, October 26). Wacky Church Under Fire Over 'Miracle
Cure' for Autism. Retrieved April 14, 2021, from https://abcnews.go.com/US/wacky-
church-fire-miracle-cure-autism/story?id=43054429
Gardner, L., Campbell, J. M., & Westdal, J. (2019). Brief Report: Descriptive analysis of law
enforcement officers’ experiences with and knowledge of autism. Journal of Autism and
Developmental Disorders, 49(3), 1278-1283.
Gates, F. T. (1916). The Country School of To-morrow (No. 1). General education board.
George, R., & Stokes, M. A. (2018). Sexual orientation in autism spectrum disorder. Autism
Research, 11(1), 133-141.
George, T. (2020, December 9). Hermeneutics. Stanford Encyclopedia of Philosophy.
https://plato.stanford.edu/entries/hermeneutics/.
Gobbi, M. (2005). Nursing practice as bricoleur activity: a concept explored. Nursing inquiry,
12(2), 117-125.
Goffman, E. (1963). Stigma and social identity. Understanding deviance: Connecting classical
and contemporary perspectives, 256, 265.
Graf, W. D., Miller, G., Epstein, L. G., & Rapin, I. (2017). The autism “epidemic”: ethical, legal,
and social issues in a developmental spectrum disorder. Neurology, 88(14), 1371-1380.
Graham Holmes, L., Zampella, C. J., Clements, C., McCleery, J. P., Maddox, B. B., Parish-
Morris, J., ... & Miller, J. S. (2020). A Lifespan Approach to Patient-Reported Outcomes
and Quality of Life for People on the Autism Spectrum. Autism Research, 13(6), 970-
987.
Granpeesheh, D., Dixon, D. R., Tarbox, J., Kaplan, A. M., & Wilke, A. E. (2009). The effects of
age and treatment intensity on behavioral intervention outcomes for children with autism
spectrum disorders. Research in Autism Spectrum Disorders, 3(4), 1014-1022.

185

Gray, K. M., Keating, C. M., Taffe, J. R., Brereton, A. V., Einfeld, S. L., Reardon, T. C., &
Tonge, B. J. (2014). Adult outcomes in autism: Community inclusion and living skills.
Journal of autism and developmental disorders, 44(12), 3006-3015.
Gray-Hammond, D. (2021, June 1). Integrating autistic culture into the world: The cultural model
of autism " NeuroClastic. NeuroClastic. https://neuroclastic.com/2021/06/01/integrating-
autistic-culture-into-the-world-the-cultural-model-of-autism/.
Griffith, K., Evans, L., & Bor, J. (2017). The Affordable Care Act reduced socioeconomic
disparities in health care access. Health Affairs, 36(8), 1503-1510.
Grinker, R. R. (2020). Autism,“stigma,” disability: a shifting historical terrain. Current
Anthropology, 61(S21), S55-S67.
Grossman, H. (2006). The beginnings of capitalism and the new mass morality. Journal of
Classical Sociology, 6(2), 201-213.
Gutiérrez, E. R., & Fuentes, L. (2009). Population control by sterilization: the cases of Puerto
Rican and Mexican-Origin women in the United States. Latino (a) Research Review,
7(3), 85-100.
Haas, K., Costley, D., Falkmer, M., Richdale, A., Sofronoff, K., & Falkmer, T. (2016). Factors
influencing the research participation of adults with autism spectrum disorders. Journal of
Autism and Developmental Disorders, 46(5), 1793-1805. doi: 10.1007/s10803-016-2708-
6. PMID: 26810436
Habermas, J. (2008). Between naturalism and religion: Philosophical essays. Polity.
Hadas, L. (2013). Resisting the romance:‘Shipping’and the discourse of genre uniqueness in
Doctor Who fandom. European Journal of Cultural Studies, 16(3), 329-343.
Haertl, K., Callahan, D., Markovics, J., & Sheppard, S. S. (2013). Perspectives of adults living
with autism spectrum disorder: Psychosocial and occupational implications.
Occupational Therapy in Mental Health, 29(1), 27-41.
Hagerty, B. M., Williams, R. A., Coyne, J. C., & Early, M. R. (1996). Sense of belonging and
indicators of social and psychological functioning. Archives of psychiatric nursing, 10(4),
235-244.
Halpern, M. T., Romaire, M. A., Haber, S. G., Tangka, F. K., Sabatino, S. A., & Howard, D. H.
(2014). Impact of state-specific Medicaid reimbursement and eligibility policies on
receipt of cancer screening. Cancer, 120(19), 3016-3024.
Han, G. T., Tomarken, A. J., & Gotham, K. O. (2019). Social and nonsocial reward moderate the
relation between autism symptoms and loneliness in adults with ASD, depression, and
controls. Autism Research, 12(6), 884-896.
Hardwick, K. R. (1993). " Your old father Abe Lincoln is dead and damned": black soldiers and
the Memphis race riot of 1866. Journal of Social History, 109-128.

186

Harley, E. H. (2006). The forgotten history of defunct black medical schools in the 19th and 20th
centuries and the impact of the Flexner Report. Journal of the National Medical
Association, 98(9), 1425.
Harper, J., & Skelton, A. (2020, November 10). Governor gives CONDITIONAL pardon to
former ODU student serving 10 years for crash that left a Man severely disabled.
Retrieved April 30, 2021, from https://www.pilotonline.com/news/crime/vp-nw-rushin-
pardon-20201109-b4jeqqkcjrbcxjskldsnszi7ci-story.html
Hartley-McAndrew, M., Doody, K. R., & Jana Mertz, M. B. A. (2016). Knowledge of autism
spectrum disorders in potential first-contact professionals. North American Journal of
Medicine and Science, 7(3).
Haywood, C., & Lawlor, M. C. (2019). Understanding lived experiences through multiple
perspectives: Caregiving as an exemplar. Journal of Occupational Science, 26(1), 128-
139.
Haywood, C., Martinez, G., Pyatak, E. A., & Carandang, K. (2019). Engaging patient
stakeholders in planning, implementing, and disseminating occupational therapy
research. American Journal of Occupational Therapy, 73(1), 7301090010p1-
7301090010p9.
Hedley, D., Uljarević, M., Wilmot, M., Richdale, A., & Dissanayake, C. (2018). Understanding
depression and thoughts of self-harm in autism: a potential mechanism involving
loneliness. Research in Autism Spectrum Disorders, 46, 1-7.
Heidegger, M. (2010). Being and time. Suny Press.
Helverschou, S. B., Steindal, K., Nøttestad, J. A., & Howlin, P. (2018). Personal experiences of
the criminal justice system by individuals with autism spectrum disorders. Autism, 22(4),
460-468.
Hepworth, D. (2017). A critical review of current police training and policy for autism spectrum
disorder. Journal of Intellectual Disabilities and Offending Behaviour, 8(4), 212-222.
Herman, B. L. (1997). The Bricoleur Revisited. American Material Culture: The Shape of the
Field.
Herman, E. (n.d.). Leo Kanner, 1894-1981. Retrieved April 15, 2021, from
https://blogs.uoregon.edu/autismhistoryproject/people/leo-kanner-1894-1981/
Hitch, D., Pépin, G., & Stagnitti, K. (2014). In the footsteps of Wilcock, part one: The evolution of
doing, being, becoming, and belonging. Occupational Therapy in Health Care, 28(3),
231-246.
Hoffner, C. A., & Cohen, E. L. (2015). Portrayal of mental illness on the TV series Monk:
Presumed influence and consequences of exposure. Health communication, 30(10),
1046-1054.
Holcomb, T. K. (2012). Introduction to American deaf culture. Oxford University Press.

187

Holmans, L. (2021, June 4). NeuroDiversity & Disability – Flexing the Systems Instead of
Blaming People for Being Unable to Fit In. Neurodivergent Rebel.
https://neurodivergentrebel.com/2021/06/05/neurodiversity-disability-flexing-the-
systems-instead-of-blaming-people-for-being-unable-to-fit-in/.
Holyfield, C., Drager, K. D., Kremkow, J. M., & Light, J. (2017). Systematic review of AAC
intervention research for adolescents and adults with autism spectrum disorder.
Augmentative and Alternative Communication, 33(4), 201-212.
Howard, G. S. (1991). Culture tales: A narrative approach to thinking, cross-cultural psychology,
and psychotherapy. American psychologist, 46(3), 187.
Howlin, P., & Moss, P. (2012). Adults with autism spectrum disorders. The Canadian Journal of
Psychiatry, 57(5), 275-283.
Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcome for children with autism.
Journal of Child Psychology and Psychiatry, 45(2), 212-229.
Hume, R., & Burgess, H. (2020). “I'm Human After All”: Autism, Trauma, and Affective
Empathy. Autism in Adulthood.
iamthemike. (2021, June 1). A letter to Authority " NeuroClastic. NeuroClastic.
https://neuroclastic.com/2021/06/01/a-letter-to-authority/.
Ikiugu, M. N., & Schultz, S. (2006). An argument for pragmatism as a foundational philosophy
of occupational therapy. Canadian Journal of Occupational Therapy, 73(2), 86-97.
Iwama, M. K., Thomson, N. A., & Macdonald, R. M. (2011). Situated meaning: a matter of
cultural safety, inclusion, and occupational therapy. Occupational therapies without
borders: Towards an ecology of occupation-based practice, 85-92.
Jackson, Jeanne, Mike Carlson, Deborah Mandel, Ruth Zemke, and Florence Clark. "Occupation
in lifestyle redesign: The well elderly study occupational therapy program." American
Journal of Occupational Therapy 52, no. 5 (1998): 326-336.
Jackson, M. D. (2009). Where thought belongs: An anthropological critique of the project of
philosophy. Anthropological Theory, 9(3), 235-251.
Jacobson, J. W., Mulick, J. A., & Schwartz, A. A. (1995). A history of facilitated
communication: Science, pseudoscience, and antiscience science working group on
facilitated communication. American Psychologist, 50(9), 750.
James, W. (1907). Pragmatism, a new name for some old ways of thinking. New York, NY:
Longmans, Green, & Co.
Jaswal, V. K., & Akhtar, N. (2019). Being versus appearing socially uninterested: Challenging
assumptions about social motivation in autism. Behavioral and Brain Sciences, 42.
Kahn, K. B., Lee, J. K., Renauer, B., Henning, K. R., & Stewart, G. (2017). The effects of
perceived phenotypic racial stereotypicality and social identity threat on racial minorities’
attitudes about police. The Journal of social psychology, 157(4), 416-428.

188

Kamio, Y., Inada, N., & Koyama, T. (2013). A nationwide survey on quality of life and
associated factors of adults with high-functioning autism spectrum disorders. Autism,
17(1), 15-26.
Kanner, L. (1943). Autistic disturbances of affective contact. Nervous child, 2(3), 217-250.
Kant, (1787/ 2011). Immanuel Kant's critique of pure reason. Read Books Ltd.
Kasprak, A. (2016a, October 21). Fact check does peppa pig cause autism? Retrieved April 14,
2021, from https://www.snopes.com/fact-check/peppa-pig-causes-autism/
Kasprak, A. (2016b, October 28). The Amish don't get autism? Retrieved April 14, 2021, from
https://www.snopes.com/fact-check/the-amish-dont-get-autism/
Kawachi, I., & Berkman, L. F. (2001). Social ties and mental health. Journal of Urban health,
78(3), 458-467.
Kelly, E., & Hassett-Walker, C. (2016). The training of New Jersey emergency service first
responders in autism awareness. Police Practice and Research, 17(6), 543-554.
Kessel, L., Erngaard, D., Flesner, P., Andresen, J., & Hjortdal, J. (2017). Do evidence-based
guidelines change clinical practice patterns?. Acta ophthalmologica, 95(4), 337-343.
Khoza-Shangase, K., & Mophosho, M. (2018). Language and culture in speech-language and
hearing professions in South Africa: The dangers of a single story. South African journal
of communication disorders, 65(1), 1-7.
Khubchandani, J. A., Shen, C., Ayturk, D., Kiefe, C. I., & Santry, H. P. (2018). Disparities in
access to emergency general surgery care in the United States. Surgery, 163(2), 243-250.
Kincheloe, J. L. (2011). Describing the bricolage: Conceptualizing a new rigor in qualitative
research. In Key works in critical pedagogy (pp. 177-189). Brill Sense.
King, T., O’Brien, C., & Sweeney, M. (Producers) (2020, June 9). Conan. [Television
Broadcast]. Burbank, CA. Conaco.
Kinsella, E. A. (2012). Knowledge paradigms in occupational science: Pluralistic perspectives.
Occupational science: Society, inclusion, participation, 69-85.
Kirk, M. (Director). (2001). LAPD Blues [Transcript]. United States: PBS Frontline.
Klahm, C. F., Papp, J., & Rubino, L. (2016). Police shootings in black and white: Exploring
newspaper coverage of officer-involved shootings. In The Politics of Policing: Between
Force and Legitimacy. Emerald Group Publishing Limited.
Kliewer, C., & Drake, S. (1998). Disability, eugenics and the current ideology of segregation: A
modern moral tale. Disability & Society, 13(1), 95-111.

189

Kornblau, B. L., & Robertson, S. M. (2021). Special Issue on Occupational Therapy With
Neurodivergent People. American Journal of Occupational Therapy, 75(3),
7503170010p1-7503170010p6.
Kuo, L., Perez-Garcia, S., Burke, L., Yamasaki, V., & Le, T. (2020). Performance, Fantasy, or
Narrative: LGBTQ+ Asian American Identity through Kpop Media and Fandom. Journal
of Homosexuality, 1-24.
Laan, J. M., Ingram, R. V., & Glidden, M. D. (2013). LAW ENFORCEMENT TRAINING ON
MENTAL DISORDERS AND AUTISM SPECTRUM DISORDERS IN THE
SOUTHEASTERN UNITED STATES. Journal of Global Intelligence & Policy, 6(10).
Ladabaum, U. (2020). Life After May 25. Annals of Internal Medicine, 173(11), 938-939.
Lai, J. K., & Weiss, J. A. (2017). Priority service needs and receipt across the lifespan for
individuals with autism spectrum disorder. Autism Research, 10(8), 1436-1447.
Lai, M. C., & Baron-Cohen, S. (2015). Identifying the lost generation of adults with autism
spectrum conditions. The Lancet Psychiatry, 2(11), 1013-1027.
Lai, M. C., & Szatmari, P. (2020). Sex and gender impacts on the behavioural presentation and
recognition of autism. Current opinion in psychiatry, 33(2), 117-123.
Lai, M. C., Kassee, C., Besney, R., Bonato, S., Hull, L., Mandy, W., ... & Ameis, S. H. (2019).
Prevalence of co-occurring mental health diagnoses in the autism population: a
systematic review and meta-analysis. The Lancet Psychiatry, 6(10), 819-829.
Larivière, N., & Quintin, J. (2020). Heidegger and human occupation: An existential perspective.
Journal of Occupational Science, 1-11.
Law, B. M. (2017). When Autism Grows Up—and Encounters Cops: Actress Holly Robinson
Peete and SLP Pamela Wiley build understanding between police officers and young men
with autism—especially those of color. The ASHA Leader, 22(8), 54-57.
Lawlor, M. C. (2003). The significance of being occupied: The social construction of childhood
occupations. American Journal of Occupational Therapy, 57(4), 424-434.
Lawlor, M. C. (2020). An untold story: A unifying narrative of the discipline of occupational
science. Journal of Occupational Science, 1-13.
Lawlor, M. C., & Mattingly, C. F. (2001). Beyond the unobtrusive observer: Reflections on
researcher–informant relationships in urban ethnography. American Journal of
Occupational Therapy, 55(2), 147-154.
Lawlor, M. C., & Solomon, O. (2017). A phenomenological approach to the cultivation of
expertise: Emergent understandings of autism. Journal of the Society for Psychological
Anthropology, 45(2), 232-249. https://doi.org/10.1111/etho.12162

190

Lawlor, M., & Solomon, O. (2016). Methodological Challenges in Examining Family and Child
Perspectives on Lived Experiences of Disability in Daily Life. American Journal of
Occupational Therapy, 70(4_Supplement_1), 7011505083p1-7011505083p1.
Lawrence, J. (2000). The Indian health service and the sterilization of Native American women.
American Indian Quarterly, 24(3), 400-419.
Laxman, D. J., Taylor, J. L., DaWalt, L. S., Greenberg, J. S., & Mailick, M. R. (2019). Loss in
services precedes high school exit for teens with autism spectrum disorder: A
longitudinal study. Autism Research, 12(6), 911-921.
Leaf, J. B., Leaf, R., McEachin, J., Taubman, M., Smith, T., Harris, S. L., ... & Waks, A. (2017).
Concerns about the Registered Behavior Technician™ in relation to effective autism
intervention. Behavior analysis in practice, 10(2), 154-163.
Leekam, S. R., Nieto, C., Libby, S. J., Wing, L., & Gould, J. (2007). Describing the sensory
abnormalities of children and adults with autism. Journal of Autism and Developmental
Disorders, 37(5), 894-910. doi: 10.1007/s10803-006-0218-7. PMID: 17016677
Levy, A., & Perry, A. (2011). Outcomes in adolescents and adults with autism: A review of the
literature. Research in Autism Spectrum Disorders, 5(4), 1271-1282. doi:
10.1016/j.rasd.2011.01.023
Lichterman, P. (2017). Interpretive reflexivity in ethnography. Ethnography, 18(1), 35–45.
https://doi.org/10.1177/1466138115592418
Liew, H. P. (2018). Healthcare satisfaction among older adults. American journal of health
behavior, 42(1), 99-108.
Lilienfeld, S. O., Marshall, J., Todd, J. T., & Shane, H. C. (2014). The persistence of fad
interventions in the face of negative scientific evidence: Facilitated communication for
autism as a case example. Evidence-Based Communication Assessment and Intervention,
8(2), 62-101.
Little, L. M., Dean, E., Tomchek, S., & Dunn, W. (2018). Sensory processing patterns in autism,
attention deficit hyperactivity disorder, and typical development. Physical &
occupational therapy in pediatrics, 38(3), 243-254.
Lloyd-Williams, R. (2018, February 15). If the world was built for me. Autism and Expectations.
https://autistrhi.com/2016/05/15/if-the-world-was-built-for-me/.
Locke, J., Ishijima, E. H., Kasari, C., & London, N. (2010). Loneliness, friendship quality and the
social networks of adolescents with high-functioning autism in an inclusive school
setting. Journal of Research in Special Educational Needs, 10(2), 74-81.
Logan, K., Iacono, T., & Trembath, D. (2017). A systematic review of research into aided AAC
to increase social-communication functions in children with autism spectrum disorder.
Augmentative and Alternative Communication, 33(1), 51-64.

191

Lotter, V. (1966). Epidemiology of autistic conditions in young children. Social psychiatry, 1(3),
124-135.
Love, A. M., Railey, K. S., Phelps, M., Campbell, J. M., Cooley-Cook, H. A., & Taylor, R. L.
(2020). Preliminary evidence for a training improving first responder knowledge and
confidence to work with individuals with Autism. Journal of Intellectual Disabilities and
Offending Behaviour.
Ludmerer, K. M. (2011). Abraham Flexner and medical education. Perspectives in biology and
medicine, 54(1), 8-16.
Lyons, J. D. (1999). Descartes and modern imagination. Philosophy and Literature, 23(2), 302-
312.
Macrae, C. N., Milne, A. B., & Bodenhausen, G. V. (1994). Stereotypes as energy-saving
devices: A peek inside the cognitive toolbox. Journal of Personality and Social
Psychology, 66(1), 37–47. https://doi.org/10.1037/0022-3514.66.1.37
Maenner, M. J., Shaw, K. A.,... & Baio, J. (2020). Prevalence of autism spectrum disorder
among children aged 8 years—autism and developmental disabilities monitoring
network, 11 sites, United States, 2016. MMWR Surveillance Summaries, 69(4), 1.
Maenner, M.J., Shaw, K.A., Baio, J., Washington, A., Patrick, M, DiRienzo, M...Dietz, P..
(2020). Prevalence of autism spectrum disorder among children aged 8 years—autism
and developmental disabilities monitoring network, 11 sites, United States, 2016. MMWR
Surveillance Summaries, 69(4), 1.
Mahner, M. (2012). The role of metaphysical naturalism in science. Science & Education,
21(10), 1437-1459.
Major, B., & O'brien, L. T. (2005). The social psychology of stigma. Annu. Rev. Psychol., 56,
393-421.
Marble, J. (2018, May 12). Let's be blunt. the priorities of nt people in autism research and
autism organizations have fucked up an entire generation of autistic people. that's shitty
science and shitty ethics. it's time to stop. #insar2018. Retrieved May 04, 2021, from
https://twitter.com/JHMarble/status/995335443309740032
Marrs, J. (2011). The trillion-dollar conspiracy: How the new world order, man-made diseases,
and zombie banks are destroying America. New York, NY: Harper.
Mason, D., Mackintosh, J., McConachie, H., Rodgers, J., Finch, T., & Parr, J. R. (2019). Quality
of life for older autistic people: The impact of mental health difficulties. Research in
Autism Spectrum Disorders, 63, 13-22.
Mason, J., & Conneeley, L. (2012). The meaning of participation in an allotment project for
fathers of preschool children. British Journal of Occupational Therapy, 75(5), 230-236.
Matson, J. L., & Kozlowski, A. M. (2011). The increasing prevalence of autism spectrum
disorders. Research in Autism Spectrum Disorders, 5(1), 418-425.

192

Mattingly, C. (1998). Healing dramas and clinical plots: The narrative structure of experience
(Vol. 7). Cambridge University Press.
Mattingly, C. (2010). The paradox of hope: Journeys through a clinical borderland. Berkeley,
CA: University of California Press.
Mattingly, C. (2017). Autism and the ethics of care: A phenomenological investigation into the
contagion of nothing. Ethos, 45(2), 250-270.
Mattingly, C. F. (2007). Acted narratives. Handbook of narrative inquiry: Mapping a
methodology, 405.
Mattingly, C., & Garro, L. C. (Eds.). (2000). Narrative and the cultural construction of illness
and healing. Univ of California Press.
Mattingly, C., & Lawlor, M. (2001). The fragility of healing. Ethos, 29(1), 30-57.
Mattingly, C., Lawlor, M., & Jacobs-Huey, L. (2002). Narrating September 11: Race, gender,
and the play of cultural identities. American Anthropologist, 104(3), 743-753.
Mattingly, C., Lutkehaus, N. C., & Throop, C. J. (2008). Bruner's search for meaning: A
conversation between psychology and anthropology. Ethos, 36(1), 1-28.
May, K. (2018, August 22). The autistic view of the world is not the neurotypical cliché –
Katherine May: Aeon Essays. Aeon. https://aeon.co/essays/the-autistic-view-of-the-
world-is-not-the-neurotypical-cliche.
Mayes, S. D., Gorman, A. A., Hillwig-Garcia, J., & Syed, E. (2013). Suicide ideation and
attempts in children with autism. Research in Autism Spectrum Disorders, 7(1), 109-119.
Mazurek, M. O., Kanne, S. M., & Wodka, E. L. (2013). Physical aggression in children and
adolescents with autism spectrum disorders. Research in Autism Spectrum
Disorders, 7(3), 455-465.
Mbiti, J. S. (1969). African religions & philosophy. Heinemann.
McGovern, C. W., & Sigman, M. (2005). Continuity and change from early childhood to
adolescence in autism. Journal of Child Psychology and Psychiatry, 46(4), 401-408.
McMillan, D. W., & Chavis, D. M. (1986). Sense of community: A definition and theory. Journal
of community psychology, 14(1), 6-23.
Mead, G. (2021, April 27). As a late diagnosed autistic person, the high volume of peer
reviewed research papers that can only be properly described as utter nonsense, has
been something of a revelation. Twitter.
https://twitter.com/twillierod/status/1386968909425827840.
Memon, M. A., Salleh, R., & Baharom, M. N. R. (2017). The mediating role of work
engagement between pay satisfaction and turnover intention. International Journal of
Economics, Management and Accounting, 25(1), 43-69.

193

Metrejean, E., & Metrejean, C. (2009). Death Taxes in the United States: A Brief History.
Journal of Business & Economics Research (JBER), 7(1).
Meyer, A. (1922). The philosophy of occupation therapy. American Journal of Physical
Medicine & Rehabilitation, 1(1), 1-10.
Miles, M. B., & Huberman, A. M. (1994). Qualitative data analysis: An expanded sourcebook.
Sage.
Milton, D. (2020). From tokenism to full participation: Autistic involvement in research and the
delivery of services. In The Routledge Handbook of Service User Involvement in Human
Services Research and Education (pp. 440-445). Routledge.
Milton, D. E. (2012). On the ontological status of autism: the ‘double empathy problem’.
Disability & Society, 27(6), 883-887.
Milton, D., & Bracher, M. (2013). Autistics speak but are they heard? Medical Sociology
Online, 7(2): 61-69. Retrieved from
http://www.medicalsociologyonline.org/resources/Vol7Iss2/MSo_7.2_Autistics-speak-
but-are-they-heard_Milton-and-Bracher.pdf
Mitka, M. (2010). The Flexner report at the century mark. JAMA, 303(15), 1465-1466.
Moon, M. R. (2009). The History and Role of Institutional Review Boards: A Useful Tension.
AMA Journal of Ethics, 11(4), 311-316.
Moran, D. (2008). Husserl’s transcendental philosophy and the critique of naturalism.
Continental Philosophy Review, 41(4), 401-425.
Morin, A. (2021, April 2). The difference between tantrums and meltdowns. Understood.
https://www.understood.org/en/learning-thinking-differences/child-learning-
disabilities/sensory-processing-issues/the-difference-between-tantrums-and-meltdowns.
Morse, J. M., Barrett, M., Mayan, M., Olson, K., & Spiers, J. (2002). Verification strategies for
establishing reliability and validity in qualitative research. International journal of
qualitative methods, 1(2), 13-22.
Morville, A. L., & Erlandsson, L. K. (2013). The experience of occupational deprivation in an
asylum centre: The narratives of three men. Journal of Occupational Science, 20(3), 212-
223.
Moseley, R. L., & Sui, J. (2019). The loneliness of me: The assumption of social disinterest and
its worrying consequences in autism. Behavioral and Brain Sciences, 42.
Mostert, M. P. (2001). Facilitated communication since 1995: A review of published studies.
Journal of autism and developmental disorders, 31(3), 287-313.
Mostert, M. P. (2010). Facilitated communication and its legitimacy—twenty-first century
developments. Exceptionality, 18(1), 31-41.

194

Mouridsen, S. E., Brønnum-Hansen, H., Rich, B., & Isager, T. (2008). Mortality and causes of
death in autism spectrum disorders: an update. Autism, 12(4), 403-414.
Murray, S. (2008). Representing autism: Culture, narrative, fascination. Oxford University
Press.
Myers, E., Davis, B. E., Stobbe, G., & Bjornson, K. (2015). Community and social participation
among individuals with autism spectrum disorder transitioning to adulthood. Journal of
autism and developmental disorders, 45(8), 2373-2381.
National Autism Association. (2017). Meet the Police: A Guide to Introducing Children &
Adults with ASD to Local Law Enforcement. Portsmouth, RI.
National Autistic Society. (2020, August 14). Meltdowns - a guide for all audiences. Autism
support - leading UK charity - National Autistic Society.
https://www.autism.org.uk/advice-and-guidance/topics/behaviour/meltdowns/all-
audiences#:~:text=Autistic%20people%20can%20find%20it,frustration%2C%20leading
%20to%20a%20meltdown.
National Symposium on Neurodiversity. (2012, March 23). What is Neurodiversity? National
Symposium on Neurodiversity at Syracuse University.
https://neurodiversitysymposium.wordpress.com/what-is-neurodiversity/.
Neff, M. L. (1913). The minimizing of insanity. Journal of the American Medical Association,
61(8), 559-563.
New International Version. (2011). BibleGateway.com. www.biblegateway.com/versions/New-
International-Version-NIV-Bible/#booklist
Newman, C., Cashin, A., & Waters, C. D. (2010). A modified hermeneutic phenomenological
approach toward individuals who have autism. Research in nursing & health, 33(3), 265-
271.
Nichols, C. M., & Unger, N. C. (Eds.). (2017). A companion to the Gilded Age and Progressive
Era. John Wiley & Sons.
NIH NCATS. (2021, April 16). About the Center. National Center for Advancing Translational
Sciences. https://ncats.nih.gov/about/center.
Noble, F. (2016, October 18). Sydney home where a colombian couple 'KILLED themselves and
kids in MURDER-SUICIDE'. Retrieved April 14, 2021, from
https://www.dailymail.co.uk/news/article-3846214/Inside-Sydney-home-Colombian-
couple-killed-kids-murder-suicide.html
North, A. S., Russell, A. J., & Gudjonsson, G. H. (2008). High functioning autism spectrum
disorders: An investigation of psychological vulnerabilities during interrogative
interview. The Journal of Forensic Psychiatry & Psychology, 19(3), 323-334.
North, B. B. (2021). Philosophy and the Ethics of Public Alaskan Indigenous Education: A
Normative Case Study. Journal of School & Society , 7(1), 25–46.

195

Novack, M. N., & Dixon, D. R. (2019). Predictors of burnout, job satisfaction, and turnover in
behavior technicians working with individuals with autism spectrum disorder. Review
Journal of Autism and Developmental Disorders, 1-9.
Nussbaum, D. (1983). Tzedakah, Social Justice, and Human Rights. JJCS, 59, 228-236.
Nyamnjoh, F. B. (2007). From bounded to flexible citizenship: Lessons from Africa. Citizenship
Studies, 11(1), 73-82.
Nylander, L., & Gillberg, C. (2001). Screening for autism spectrum disorders in adult psychiatric
out-patients: a preliminary report. Acta Psychiatrica Scandinavica, 103(6), 428-434.
O'Connor, G. (Director). (2016). The Accountant [Motion picture]. United States: Warner Bros.
Pictures.
Office of Autism Research Coordination, National Institute of Mental Health, on behalf of the
Interagency Autism Coordinating Committee (IACC). 2014-2015 IACC Autism Spectrum
Disorder Research Portfolio Analysis Report. October 2017. Retrieved from the U.S.
Department of Health and Human Services Interagency Autism Coordinating Committee
website: https://iacc.hhs.gov/publications/portfolio-analysis/2015/.
Parham, L. D., & Fazio, L. S. (Eds.). (2008). Play in occupational therapy for children. Mosby.
Park, M. (2008). Making scenes: Imaginative practices of a child with autism in a sensory
integration–based therapy session. Medical anthropology quarterly, 22(3), 234-256.
Park, M., Bonsall, A., & Fogelberg, D. (2021). Everyday Hermeneutics: Understanding (the
meaning of) occupational engagement. In, Taff (Ed.), Philosophy and Occupational
Therapy: Informing Education, Research, and Practice (pp. 267-291). Thorofare, NJ:
SLACK Incorporated.
Patel, J. A., Nielsen, F. B. H., Badiani, A. A., Assi, S., Unadkat, V. A., Patel, B., ... & Wardle, H.
(2020). Poverty, inequality and COVID-19: the forgotten vulnerable. Public health, 183,
110.
PBS Frontline. (nd). The steel business. Retrieved May 10, 2021, from
https://www.pbs.org/wgbh/americanexperience/features/carnegie-steel-business/
Pecora, L. A., Hancock, G. I., Hooley, M., Demmer, D. H., Attwood, T., Mesibov, G. B., &
Stokes, M. A. (2020). Gender identity, sexual orientation and adverse sexual experiences
in autistic females. Molecular Autism, 11(1), 1-16.
Peirce, C. S. (1877). Fixation of Belief. Popular Science Monthly. Retrieved from Oregon State
University. http://oregonstate.edu/instruct/phl201/modules/peirce/peirce_print.pdf.
Pellicano, E., Dinsmore, A., & Charman, T. (2014). What should autism research focus upon?
Community views and priorities from the United Kingdom. Autism, 18(7), 756-770. doi:
10.1177/1362361314529627

196

Pelto, P. J., & Pelto, G. H. (1978). Anthropological research: The structure of inquiry. Cambridge
University Press.
Pelton, M. K., Crawford, H., Robertson, A. E., Rodgers, J., Baron-Cohen, S., & Cassidy, S.
(2020). Understanding suicide risk in autistic adults: Comparing the Interpersonal Theory
of Suicide in autistic and non-autistic samples. Journal of autism and developmental
disorders, 50(10), 3620-3637.
Pernick, M. S. (1997). Eugenics and public health in American history. American Journal of
Public Health, 87(11), 1767-1772.
Perry, D., & Carter-Long, L. (2016). The Ruderman white paper on media converage of law
enforcement use of force and disability. Boston, MA: Ruderman Foundation.
Pfeffer, R. D. (2016). Childhood victimization in a national sample of youth with autism
spectrum disorders. Journal of Policy and Practice in Intellectual Disabilities, 13(4),
311-319.
Pichora-Fuller, M. K., Kramer, S. E., Eckert, M. A., Edwards, B., Hornsby, B. W., Humes, L. E.,
... & Wingfield, A. (2016). Hearing impairment and cognitive energy: The framework for
understanding effortful listening (FUEL). Ear and hearing, 37, 5S-27S.
Pooremamali, P., Morville, A. L., & Eklund, M. (2017). Barriers to continuity in the pathway
toward occupational engagement among ethnic minorities with mental illness.
Scandinavian journal of occupational therapy, 24(4), 259-268.
Porter, R. (1990). Foucault's great confinement. History of the Human Sciences, 3(1), 47-54.
Potvin, M. C., Snider, L., Prelock, P., Kehayia, E., & Wood-Dauphinee, S. (2013). Recreational
participation of children with high functioning autism. Journal of Autism and
Developmental Disorders, 43(2), 445-457.
Rava, J., Shattuck, P., Rast, J., & Roux, A. (2017). The prevalence and correlates of involvement
in the criminal justice system among youth on the autism spectrum. Journal of Autism
and Developmental Disorders, 47(2), 340-346.
Ream, T. C. (2007). Pragmatism and the unlikely influence of German idealism on the academy
in the United States. Educational Philosophy and Theory, 39(2), 150-167.
Reich, R. (2018). Just giving: Why philanthropy is failing democracy and how it can do better.
Princeton University Press.
Reich, R., Cordelli, C., & Bernholz, L. (Eds.). (2019). Philanthropy in democratic societies:
History, institutions, values. University of Chicago Press.
Reichel, P. L. (1988). Southern slave patrols as a transitional police type. Am. J. Police, 7, 51.
Reilly, M. (1963). The Eleanor Clarke Slagle: Occupational therapy can be one of the great ideas
of 20th century medicine. Canadian Journal of Occupational Therapy, 30(1), 5-19.

197

Richardson, K. (2018). Challenging sociality: An anthropology of robots, autism, and
attachment. Springer.
Ricoeur, P. (1981). Hermeneutics and the human sciences: Essays on language, action and
interpretation. Cambridge university press.
Ringland, K. E., Wolf, C. T., Faucett, H., Dombrowski, L., & Hayes, G. R. (2016, May). " Will I
always be not social?" Re-Conceptualizing Sociality in the Context of a Minecraft
Community for Autism. In Proceedings of the 2016 CHI conference on human factors in
computing systems (pp. 1256-1269).
Rizk, S., Pizur-Barnekow, K., & Darragh, A. R. (2011). Leisure and social participation and
health-related quality of life in caregivers of children with autism. OTJR: Occupation,
Participation and Health, 31(4), 164-171.
Robison, J. E. (2017). Kanner, Asperger, and Frankl: A third man at the genesis of the autism
diagnosis. Autism, 21(7), 862-871.
Roche, L., Adams, D., & Clark, M. (2021). Research priorities of the autism community: A
systematic review of key stakeholder perspectives. Autism, 25(2), 336-348.
Rodden, J., & Saline, S. (2021, January 14). What Is Executive Dysfunction? ADDitude.
https://www.additudemag.com/what-is-executive-function-disorder/.
Roux, A. M., Rast, J. E., Anderson, K. A., & Shattuck, P. T. (2017). National autism indicators
report: Developmental disability services and outcomes in adulthood. Philadelphia, PA:
AJ Drexel Autism Institute, Drexel University.[Google Scholar].
Rovai, A. P. (2002). Building sense of community at a distance. The International Review of
Research in Open and Distributed Learning, 3(1).
Rutecki, G. W. (2011). Forced sterilization of native Americans: Later twentieth century
physician cooperation with national eugenic policies?. Ethics & Medicine, 27(1), 33.
Ryan, J. G. (1977). The Memphis riots of 1866: terror in a black community during
Reconstruction. The Journal of Negro History, 62(3), 243-257.
Rycroft-Malone, J., Seers, K., Titchen, A., Harvey, G., Kitson, A., & McCormack, B. (2004).
What counts as evidence in evidence-based practice?. Journal of advanced nursing,
47(1), 81-90.
Saadi, A., Himmelstein, D. U., Woolhandler, S., & Mejia, N. I. (2017). Racial disparities in
neurologic health care access and utilization in the United States. Neurology, 88(24),
2268-2275.
Sackett, D. L., Rosenberg, W. M., Gray, J. M., Haynes, R. B., & Richardson, W. S. (1996).
Evidence based medicine. BMJ: British Medical Journal, 313(7050), 170.
Sacks, T. K. (2019) The Mississippi Appendectomy: Race and Reproductive Healthcare. In
Invisible Visits (pp. 93-112). Oxford University Press.

198

Safford, K. (1984). La Operación: forced sterilization. Jump Cut, 29, 37-38.
Sanders, B. S. (1964). Measuring community health levels. American Journal of Public Health
and the Nations Health, 54(7), 1063-1070.
Sarris, M. (2020, September 16). Autistic People More Likely to Identify as LGBTQ. SPARK for
Autism. https://sparkforautism.org/discover_article/autism-lgbtq-identity/.
Sartre, J. P. (2001). Being and nothingness: An essay in phenomenological ontology. Citadel
Press.
Sastry, A., & Bates, K. (2017, April 26). When la erupted in anger: A look back at the rodney
king riots. Retrieved April 30, 2021, from
https://www.npr.org/2017/04/26/524744989/when-la-erupted-in-anger-a-look-back-at-
the-rodney-king-riots
Savarese, R. J. (2013). Toward a postcolonial neurology: autism, Tito Mukhopadhyay, and a new
geo-poetics of the body. In Foundations of Disability Studies (pp. 125-143). Palgrave
Macmillan, New York.
Schaaf, R. C., Benevides, T. W., Blanche, E., Brett-Green, B. A., Burke, J., Cohn, E., ... &
Schoen, S. A. (2010). Parasympathetic functions in children with sensory processing
disorder. Frontiers in integrative neuroscience, 4, 4.
Schiappa, E., Gregg, P. B., & Hewes, D. E. (2006). Can one TV show make a difference? A Will
& Grace and the parasocial contact hypothesis. Journal of homosexuality, 51(4), 15-37.
Scholey, A. B., Harper, S., & Kennedy, D. O. (2001). Cognitive demand and blood glucose.
Physiology & behavior, 73(4), 585-592.
Schott, W., Nonnemacher, S., & Shea, L. (2021). Service use and unmet needs among adults
with autism awaiting home-and community-based Medicaid services. Journal of Autism
and Developmental Disorders, 51(4), 1188-1200.
Schultz, G. (2017, September 10). A roundup of posts against autism speaks. Retrieved April 14,
2021, from https://medium.com/@KirstenSchultz/a-roundup-of-posts-against-autism-
speaks-5dbf7f8cfcc6
Scruton, R. (2004). A short history of modern philosophy: From Descartes to Wittgenstein.
Routledge.
Sequenzia, A. (2016). Facebook: Thinking Persons Guide to Autism. Facebook.
https://www.facebook.com/thinkingpersonsguidetoautism/.
Setzer, R. (2020, July 27). Decolonization as a Strategy for Accommodating Disabilities.
Disability Visibility Project.
https://disabilityvisibilityproject.com/2020/07/19/decolonization-as-a-strategy-for-
accommodating-disabilities/.

199

Shakespeare, W., Mowat, B. A., & Werstine, P. (2012). The tragedy of Hamlet, Prince of
Denmark. Simon & Schuster Paperbacks.
Shattuck, P. T., Wagner, M., Narendorf, S., Sterzing, P., & Hensley, M. (2011). Post–high
school service use among young adults with an autism spectrum disorder. Archives of
pediatrics & adolescent medicine, 165(2), 141-146.
Shea, L. L., Verstreate, K., Nonnemacher, S., Song, W., & Salzer, M. S. (2021). Self-reported
community participation experiences and preferences of autistic adults. Autism,
1362361320987682.
Sheffer, E. (2018). Asperger's children: The origins of autism in Nazi Vienna. WW Norton &
Company.
Siegel, B. (1995). Assessing allegations of sexual molestation made through facilitated
communication. Journal of Autism and Developmental Disorders.
Sievers, S. B., Trembath, D., & Westerveld, M. (2018). A systematic review of predictors,
moderators, and mediators of augmentative and alternative communication (AAC)
outcomes for children with autism spectrum disorder. Augmentative and Alternative
Communication, 34(3), 219-229.
Silberman, S. (2015). Neurotribes: The legacy of autism and the future of neurodiversity.
Penguin.
Singer, A. (2013). Giving practices in Islamic societies. Social Research: An International
Quarterly, 80(2), 341-358.
Singer, J. (2017). Neurodiversity: the birth of an idea.
Singh, J. S., & Bunyak, G. (2019). Autism disparities: a systematic review and meta-ethnography
of qualitative research. Qualitative health research, 29(6), 796-808.
Skelton, T., & Valentine, G. (2003). Political participation, political action and political
identities: young D/deaf people's perspectives. Space and Polity, 7(2), 117-134.
Solomon, O. (2012). Doing, being and becoming: The sociality of children with autism in
activities with therapy dogs and other people. The Cambridge Journal of Anthropology,
30(1), 109-126.
Solomon, O., & Bagatell, N. (2010). Introduction: autism: rethinking the possibilities. Ethos,
38(1), 1-7.
Solomon, O., & Lawlor, M. C. (2013). “And I look down and he is gone”: Narrating autism,
elopement and wandering in Los Angeles. Social science & medicine, 94, 106-114.
Solomon, O., & Lawlor, M. C. (2018). Beyond 40:31: Narrative phenomenology of wandering
and dementia. Culture, Medicine & Psychiatry, 42, 206-243. doi: 10.1007/s11013-017-
9562-7. PMID: 29368117 PMCID: PMC5976522

200

Solomon, O., & Lawlor, M. C. (2018). Beyond V40. 31: Narrative phenomenology of wandering
in autism and dementia. Culture, Medicine, and Psychiatry, 42(2), 206-243.
Solomon, O., Angell, A. M., Yin, L., & Lawlor, M. C. (2015). “You Can Turn off the Light If You'd
Like”: Pediatric Health Care Visits for Children with Autism Spectrum Disorder as an
Interactional Achievement. Medical anthropology quarterly, 29(4), 531-555.
Somers, S. (2020, December 3). The world was not built for autistic people, but there are simple
ways you can help people like me. ABC News. https://www.abc.net.au/news/2020-12-
02/tips-for-better-communication-from-an-autistic-person/12894868.
Song, W., Shea, L., Nonnemacher, S. L., Brusilovskiy, E., Townley, G., & Salzer, M. M. (2021).
Community Participation Comparison Between Adults on the Autism Spectrum and
Adults in the General Population. Journal of Autism and Developmental Disorders, 1-12.
Spencer, L., Lyketsos, C. G., Samstad, E., Dokey, A., Rostov, D., & Chisolm, M. S. (2011). A
suicidal adult in crisis: an unexpected diagnosis of autism spectrum disorder. American
Journal of Psychiatry, 168(9), 890-892.
Srikanth, A. (2021, March 17). National database on police Killings Tracked 1,127 deaths last
year. Retrieved April 30, 2021, from https://thehill.com/changing-
america/respect/equality/543712-national-database-on-police-killings-tracked-1127-
police
Stack, A., & Lucyshyn, J. (2019). Autism spectrum disorder and the experience of traumatic
events: review of the current literature to inform modifications to a treatment model for
children with autism. Journal of autism and developmental disorders, 49(4), 1613-1625.
Stake, R. E. (1994). Case study: Composition and performance. Bulletin of the Council for
Research in Music Education, 31-44.
Starr, P. (1977). Medicine, economy and society in nineteenth-century America. Journal of
Social History, 10(4), 588-607.
Starr, P. (2008). The social transformation of American medicine: The rise of a sovereign
profession and the making of a vast industry. Basic books.
Stebleton, M. J., Soria, K. M., & Huesman Jr, R. L. (2014). First-generation students' sense of
belonging, mental health, and use of counseling services at public research universities.
Journal of College Counseling, 17(1), 6-20.
Stephens, N. M., Townsend, S. S., Markus, H. R., & Phillips, L. T. (2012). A cultural mismatch:
Independent cultural norms produce greater increases in cortisol and more negative
emotions among first-generation college students. Journal of Experimental Social
Psychology, 48(6), 1389-1393.
Stevenson, B. (2015). Just Mercy. Spiegel & Grau.

201

Stewart, R. E., Marcus, S. C., Hadley, T. R., Hepburn, B. M., & Mandell, D. S. (2018). State
adoption of incentives to promote evidence-based practices in behavioral health systems.
Psychiatric Services, 69(6), 685-688.
Stieg, C. (2016, March 21). Toys R Us Offers Quiet Shopping Hours for Kids With Autism. Good
Housekeeping. https://www.goodhousekeeping.com/life/parenting/news/a41150/toys-r-
us-offering-quiet-shopping-hours-for-kids-with-autism/.
Strauss, C. L. (1962). Savage mind. Chicago, IL: University of Chicago.
Summers, J. (2021, April 2). As Private Equity Comes to Dominate Autism Services... The
Nation. https://www.thenation.com/article/society/private-equity-autism-aba/.
Sweetapple, C. (2020). Forced “Normalcy” as Political Trauma for Students With Disabilities.
Making A Spectacle: Examining Curriculum/Pedagogy as Recovery From Political
Trauma, 179.
Taylor, J. L., & DaWalt, L. S. (2020). Working toward a better understanding of the life
experiences of women on the autism spectrum.
Taylor, J. L., & Seltzer, M. M. (2011). Employment and post-secondary educational activities for
young adults with autism spectrum disorders during the transition to adulthood. Journal
of autism and developmental disorders, 41(5), 566-574.
Taylor, K. Y. (2020). Of course there are protests. The state is failing Black people. New York
Times.
Teagardin, J., Dixon, D. R., Smith, M. N., & Granpeesheh, D. (2012). Randomized trial of law
enforcement training on autism spectrum disorders. Research in Autism Spectrum
Disorders, 6(3), 1113-1118.
Therapist Neurodiversity Collective. (2021, March 22). Self Harm or Aggressive Behavior:
Therapy Neurodiversity Collective. Therapist Neurodiversity Collective.
https://therapistndc.org/therapy/behavior-self-harm-or-aggression/.
Thomas, K. (2017, April 1). From Boys to Men . For Peete's Sake. episode, West Hollywood,
CA; OWN.
Throop, C. J. (2003). Articulating experience. Anthropological theory, 3(2), 219-241.
Tostanoski, A., Lang, R., Raulston, T., Carnett, A., & Davis, T. (2014). Voices from the past:
Comparing the rapid prompting method and facilitated communication. Developmental
Neurorehabilitation, 17(4), 219-223.
Twain, M., & Warner, C. D. (1873/2001). The Gilded Age: a tale of today. Penguin.
Unigwe, S., Buckley, C., Crane, L., Kenny, L., Remington, A., & Pellicano, E. (2017). GPs’
confidence in caring for their patients on the autism spectrum: an online self-report study.
British Journal of General Practice, 67(659), e445-e452.

202

USC Chan. (2019, December 18). 30 Years of USC Occupational Science (Long Cut).
YouTube.
https://www.youtube.com/watch?v=wsV5VzlahkA&list=PLYYUCmdmGs9lK5R0iaUpYcT
OmvPwYejg_&index=7.
Van Heijst, B. F., & Geurts, H. M. (2015). Quality of life in autism across the lifespan: A meta-
analysis. Autism, 19(2), 158-167.
Vargas, T. (2020, October 02). Perspective | a young black autistic man was sentenced to 50
years for a car crash. tens of thousands of people are now calling for his freedom.
Retrieved April 30, 2021, from https://www.washingtonpost.com/local/a-young-black-
autistic-man-was-sentenced-to-50-years-for-a-car-crash-tens-of-thousands-of-people-are-
now-calling-for-his-freedom/2020/06/24/fabeda1a-b640-11ea-a8da-
693df3d7674a_story.html
Verhoeff, B. (2013). Autism in flux: a history of the concept from Leo Kanner to DSM-5.
History of psychiatry, 24(4), 442-458.
Vinter, L. P., Dillon, G., & Winder, B. (2020). ‘People don’t like you when you’re different’:
exploring the prison experiences of autistic individuals. Psychology, Crime & Law, 1-20.
von Schelling, F.(1994). On the history of modern philosophy. Cambridge University Press.
Wagmeister, E. (2016, October 17). Netflix greenlights 'atypical' AUTISM family comedy
Starring Jennifer Jason Leigh. Retrieved April 14, 2021, from
https://variety.com/2016/tv/news/atypical-netflix-autism-family-comedy-jennifer-jason-
leigh-1201891303/
Wakefield, A. J., Murch, S. H., Anthony, A., Linnell, J., Casson, D. M., Malik, M., ... &
Valentine, A. (1998). RETRACTED: Ileal-lymphoid-nodular hyperplasia, non-specific
colitis, and pervasive developmental disorder in children.
Walker, N. (2014, September 27). Neurodiversity: Some Basic Terms & Definitions.
NEUROCOSMOPOLITANISM . https://neurocosmopolitanism.com/neurodiversity-
some-basic-terms-definitions/.
Webb, E. J., Campbell, D. T., Schwartz, R. D., & Sechrest, L. (1999). Unobtrusive measures
(Vol. 2). Sage Publications.
Webster M. A. (2012). Evolving concepts of sensory adaptation. F1000 biology reports, 4, 21.
doi:10.3410/B4-21
Weine, S., Kohrt, B. A., Collins, P. Y., Cooper, J., Lewis-Fernandez, R., Okpaku, S., &
Wainberg, M. L. (2020). Justice for George Floyd and a reckoning for global mental
health. Global Mental Health, 7.
Weiss, J. A., & Fardella, M. A. (2018). Victimization and perpetration experiences of adults with
autism. Frontiers in psychiatry, 9, 203.

203

Weitlauf, A. S., Sathe, N., McPheeters, M. L., & Warren, Z. E. (2017). Interventions targeting
sensory challenges in autism spectrum disorder: A systematic review. Pediatrics, 139(6),
e20170347. doi: 10.1542/peds.2017-0347. PMID: 28562287
Whiteford, G. (1997). Occupational deprivation and incarceration. Journal of Occupational
Science, 4(3), 126-130.
Whiteford, G. (2000). Occupational deprivation: Global challenge in the new millennium. British
journal of occupational therapy, 63(5), 200-204.
Whiteford, G. E. (2005). Understanding the occupational deprivation of refugees: A case study
from Kosovo. Canadian Journal of Occupational Therapy, 72(2), 78-88.
Whiteford, M. M. G. E. (2011). Occupational science: Genesis, evolution and future
contribution. Foundations for Practice in Occupational Therapy-E-BOOK, 243.
Wiggins, L. D., Durkin, M., Esler, A., Lee, L. C., Zahorodny, W., Rice, C., ... & Baio, J. (2020).
Disparities in documented diagnoses of autism spectrum disorder based on demographic,
individual, and service factors. Autism Research, 13(3), 464-473.
WikiQuote. (2020, September 17). John D. Rockefeller. Wikiquote.
https://en.wikiquote.org/wiki/John_D._Rockefeller.
Wilcock, A. A. (1999). Reflections on doing, being and becoming. Australian Occupational
Therapy Journal, 46(1), 1-11.
Wilcock, A. A. (2006). An occupational perspective of health. Slack Incorporated.
Williams, A. (2012, July 13). Why Is It Hard to Make Friends Over 30? The New York Times.
https://www.nytimes.com/2012/07/15/fashion/the-challenge-of-making-friends-as-an-
adult.html.
Wilson, J. L. (2019). Democratic equality. Princeton University Press.
Winau, F., Westphal, O., & Winau, R. (2004). Paul Ehrlich—in search of the magic bullet.
Microbes and Infection, 6(8), 786-789.
Woolf, S. H. (2008). The meaning of translational research and why it matters. Jama, 299(2),
211-213.
Wrigley-Field, E. (2020). US racial inequality may be as deadly as COVID-19. Proceedings of
the National Academy of Sciences, 117(36), 21854-21856.
Yerxa, E. J. (1992). Some implications of occupational therapy’s history for its epistemology,
values, and relation to medicine. American Journal of Occupational Therapy, 46(1), 79-
83.
Yerxa, E. J. (1993). Occupational science: A new source of power for participants in
occupational therapy. Journal of occupational science, 1(1), 3-9.

204

Zanotti, J. M. (2018). Handle with care: Caring for children with autism spectrum disorder in the
ED. The Peer-Reviewed Journal of Clinical Excellence, 48(2), 50-55.
Zener, D. (2019). Journey to diagnosis for women with autism. Advances in autism.
Zerbo, O., Massolo, M. L., Qian, Y., & Croen, L. A. (2015). A study of physician knowledge
and experience with autism in adults in a large integrated healthcare system. Journal of
autism and developmental disorders, 45(12), 4002-4014.
Žmolek, M. A. (2019). “Compelled to Sell All”: Proletarianization, Agrarian Capitalism and the
Industrial Revolution. In Case Studies in the Origins of Capitalism (pp. 63-86). Palgrave
Macmillan, Cham.

Abstract (if available)

Abstract This dissertation explores the experience of autistic young adults and their families. The priorities of autistic people have been largely ignored by researchers and clinicians who serve this population. The data presented here has been drawn from three separate but closely related studies conducted between 2016 and 2021. One project, initially developed for this dissertation, sought autistic adults to share their experiences related to community-based occupations. The other two projects (Adult Collective Narrative and Autism in the Community), sought to enhance understanding of the experience of autistic adolescents and young adults and their families through interviews with a broad range of family, practitioners, and community members of autistic young adults. Participants in all groups reported persistent difficulties and institutional barriers to accessing meaningful services and safe community spaces. A mismatch in priorities between autistic people and the funders of service systems was identified as a primary concern for autistic adults and their family members. Participants fears related to violence at the hands of police are described. Historical analysis of trends in service provision, advocacy, and public policy highlight the systemic nature of the issues that contribute to distress and poor outcomes for autistic people.

Linked assets

University of Southern California Dissertations and Theses

Conceptually similar

PDF

Lived experiences of gay men with HIV; intersections of portraiture, narrative and engagement

PDF

Situated experiences: a qualitative study of day-to-day life and participation of adolescents and young adults with a spinal cord injury and their caregivers

PDF

Unpacking experiences and narratives: life changing, changing life, or merely taking a trip

PDF

Understanding bilingual Latino parents’ experiences of their children’s autism services in Los Angeles: a critical ethnography

PDF

An exploratory study of autistic women’s lived experiences and social connectivity using narrative phenomenology and social network analysis

PDF

Sociodemographic influences on the early caregiving environment and likelihood of autism

PDF

Activity engagement of young adults with autoimmune arthritis: a multi-method approach

PDF

Developmental trajectories of sensory patterns in young children with and without autism spectrum disorder: a longitudinal population-based study from infancy to school age

PDF

Mothers’ perspectives on everyday life with children with autism: Mealtimes explored

PDF

An ethnographic study of men fathering children with disabilities

PDF

Exploring the intersection of occupational engagement and well-being in student musicians: A multi-method study

PDF

Developmental trajectories, maternal-infant transactions, and child outcomes of social-emotional competence and sensory processing

PDF

Diabetes management in the everyday lives of emerging adults

PDF

The intersection of oral care experiences, culture, and autism for Black American families: a mixed-methods study

PDF

Social interaction moderates enjoyment and perception of physical activity during exergame play in young adults with autism spectrum disorders

PDF

Occupation in the lives of adults with schizophrenia: creations of hope

PDF

Optimizing participation of military service members with chronic symptoms after mild traumatic brain injury

PDF

Data mining: gathering data from a pediatric occupational therapy practice

PDF

Core, social and moral disgust processing in youth with autism spectrum disorder (ASD)

PDF

Communication apprehension among autistic employees

Asset Metadata

Creator Turnbull, David (author)

Core Title Of barriers and breach: a narrative phenomenology of autism, community, and occupation

School School of Dentistry

Degree Doctor of Philosophy

Degree Program Occupational Science

Degree Conferral Date 2021-12

Publication Date 11/30/2021

Defense Date 11/29/2021

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

Tag adults,autism,OAI-PMH Harvest,occupation,phenomenology,Police,pragmatism

Format application/pdf (imt)

Language English

Contributor Electronically uploaded by the author (provenance)

Advisor Lawlor, Mary (committee chair), Blanche, Erna (committee member), Mattingly, Cheryl (committee member), Pyatak, Beth (committee member), Sideris, John (committee member)

Creator Email dturnbul@usc.edu,turnbull37@gmail.com

Permanent Link (DOI) https://doi.org/10.25549/usctheses-oUC17789611

Unique identifier UC17789611

Legacy Identifier etd-TurnbullDa-10264

Document Type Dissertation

Format application/pdf (imt)

Rights Turnbull, David

Type texts

Source 20211206-wayne-usctheses-batch-901-nissen (batch), 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 author, as the original true and official version of the work, but does not grant the reader permission to use the work if the desired use is covered by copyright. It is the author, as rights holder, who must provide use permission if such use is covered by copyright. The original signature page accompanying the original submission of the work to the USC Libraries is retained by the USC Libraries and a copy of it may be obtained by authorized requesters contacting the repository e-mail address given.

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

Repository Email cisadmin@lib.usc.edu