Autistic Adults: Exploring the Forgotten End of the Spectrum
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About this ebook
An accessible and comprehensive look at autistic adults, written with an aim towards understanding and empathy.
Most research and writing about autism is focused on children, although most autistic people are adults. In this book, Daniel Smeenk addresses this gap by looking at how autistic adults present and how they see themselves and offers insights on autistic adults, from an autistic writer. He provides information and practical advice to inspire neurotypicals to a greater empathy and understanding of the autistic adults in their lives.
Unlike most books on autism, Autistic Adults: Exploring the Forgotten End of the Spectrum explores the subject from multiple points of view. Daniel Smeenk examines autism research, self-advocacy communities and the fundamental differences between groups that want to help autistic people but disagree on how to do so. Thoroughly researched yet accessible, Smeenk takes an even- handed approach to current debates such as how funding should be spent and what kind of supports are most beneficial. He also addresses topics such as employment, lack of research on autistic adults and issues with public perception.
Daniel Smeenk
After graduating from the University of Toronto, Daniel Smeenk started his career in journalism working as a copy editor and book reviewer for Brunswick News in Saint John, NB before becoming a reporter for Greatwest Newspapers in northern Alberta. Since 2018, Daniel Smeenk has worked in public relations. He lives in St. Catharines, Ontario.
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Autistic Adults - Daniel Smeenk
Ronsdale Press
Autistic Adults
Copyright © 2023 Daniel Smeenk
All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, without prior written permission of the publisher, or, in Canada, in the case of photocopying or other reprographic copying, a licence from Access Copyright (the Canadian Copyright Licensing Agency).
Ronsdale Press
125A – 1030 Denman Street, Vancouver, B.C. Canada V6G 2M6
www.ronsdalepress.com
Book Design: Derek von Essen
Cover Design: David Lester
Ronsdale Press wishes to thank the following for their support of its publishing program: the Canada Council for the Arts, the Government of Canada, the British Columbia Arts Council, and the Province of British Columbia through the British Columbia Book Publishing Tax Credit program.
Supported by the Canada Council for the ArtsSupported by the Government of Canada
Supported by the Province of British Columbia through the British Columbia Arts CouncilLibrary and Archives Canada Cataloguing in Publication
Title: Autistic adults : exploring the forgotten end of the spectrum / Daniel Smeenk.
Names: Smeenk, Daniel, author.
Description: Includes index.
Identifiers: Canadiana (print) 2023047716X | Canadiana (ebook) 20230477178 | ISBN 9781553806950 (softcover) | ISBN 9781553806974 (PDF) | ISBN 9781553806967 (EPUB)
Subjects: LCSH: Autistic people. | LCSH: Autism.
Classification: LCC RC553.A88 S64 2023 | DDC 616.85/882—dc23
At Ronsdale Press we are committed to protecting the environment. To this end we are working with Canopy and printers to phase out our use of paper produced from ancient forests. This book is one step towards that goal.
Printed in Canada
Dedicated to my uncle, Douglas Gunter
Contents
Acknowledgements
Disclaimer on Quotes and Language
Introduction
Part 1
Chapter 1: A History and Overview of Autism
Chapter 2: Autistic Adults Today
Chapter 3: Social Communication
Chapter 4: Restricted and Repetitive Behaviours
Part 2
Chapter 5: An Issue of Data
Chapter 6: An Issue of Resources and Employment
Chapter 7: An Issue of Public Understanding
Chapter 8: An Issue of Self-Understanding
Conclusion
Notes
Index
Acknowledgements
The heart of this book are the people who agreed to be interviewed, especially the twenty-three autistic adults and four parents of autistic adults who shared their experiences between January and August 2021. They made this book not just possible but meaningful.
The demographics for the autistic interviewees break down like this: eleven people were over forty and twelve people were under forty; there were ten men, twelve women, and one person who identified as non-binary; and there were eight Canadians, eight Americans, three people from the U.K. (two from England and one in Northern Ireland), and one person each from India, New Zealand, Israel, and Belgium.
In the interest of full disclosure, Todd Simkover, Noam Grossman, and Thomas Yackimec were friends before I started on this book. Jacob Dean is a second cousin. Everyone else came forward through requests made to non-profit organizations, particularly Autism Canada, Action for Autism, which is based in India, and the Asperger/Autism Network (AANE).
Three of the autistic people I interviewed requested anonymity. It has been given to them.
I also found people willing to be interviewed on the Facebook groups Autistic Not Weird and Autistic Researchers Researching Autism. I am very thankful to these groups and their members who agreed to be interviewed.
Among the people I interviewed, three are self-diagnosed. To not single them out, I haven’t named them in this book. I mention this because self-diagnosis is a controversial topic. People in the autistic self-advocacy community tend to accept self-diagnosis, while those outside of it tend to be more skeptical.
To receive services, I think people need an official diagnosis from a qualified professional, and I believe there is no substitute for one. I highly recommend anyone who may be autistic to seek a diagnosis. As a matter of personal identity, which was what interested me for this book, I accept self-diagnosis because there is typically no advantage to it, especially given the stigma that still exists with autism. It’s also often the first step on an important journey.
An assessment can involve a long waiting list and a lot of money, which is why people are sometimes slow to get one. They can quite reasonably believe they are autistic, however, especially if they have realized this as an adult. I believe everyone I interviewed for the book is autistic. You can decide whether you want to believe that everyone, including self-diagnosed people, are autistic.
There were also ten other on-the-record interviews represent a wide swath of the autism community, from professionals to academics to non-profit workers. They all represented different points of view, which were equally valuable for my own understanding of the world of autism.
I also had many off-the-record conversations with professionals and researchers who really helped me understand these issues better. Some of these conversations were made after reaching out through email, and some came from connections made at conferences.
I am thankful to the professionals at the National Autism Conference at Penn State who helped me understand behaviourism better. I am also thankful to the autistic people at the Aucademy Autistic Mental Health and Well-Being conference and the Participatory Autism Research Collective’s Critical Autism Studies conference for better-understanding autism as seen by other autistic people.
I am also hugely thankful to Martin Wightman and Judith Brand for editing this book, as well as Dr. Jason Travers at Temple University for providing a very needed expert opinion. I would also like to thank Bruce Petherick for giving me an interview, and for providing a well-informed autistic perspective that gave me insight into the entire book.
Of course, I would also like to thank Ronsdale Press for publishing this book. I did not write this book with the expectation that a publisher would agree to publish it. You have helped spread this message more than I could have ever reasonably hoped to.
I’m also grateful for the numerous friends and family who read drafts and gave me feedback. Apart from their wise and trusted advice, they also reflect the people I am writing this book for in many ways, so their advice was particularly appreciated.
Disclaimer on Quotes and Language
The quotes from the autistic adults and parents of autistic adults were approved before publication by those who said them.
This is not a typical practice of journalistic writing. I do not usually condone this practice, as you can sometimes end up being a mouthpiece for the source and lose your independence and objectivity. I felt in this case, however, that the benefits outweighed the drawbacks.
These are not people who have something to gain through giving interviews. They are sharing deeply personal stories. The risk of making an error and publicly misrepresenting them outweighed the perceived loss of independence on my part. I also do not believe in this case that the message or the material would be fundamentally changed by their approval or disapproval. Nevertheless, this fact should be understood by the audience before reading this book.
I did not offer the same privilege to people who were interviewed for their expertise. I am deeply grateful for their participation, and I hope and believe that I will represent them and their work accurately. But the stakes are different. They are not pouring out sensitive details of their lives.
I also want to make some notes on language. This is one of the most contentious issues in the world of autism. The difference between language in and out of the autistic community is stark and often not used without meaningful consequences. Using some language will offend the autistic community; using other language can be confusing and jargony for people outside the community.
In general, I will use the terms that are preferred by the autistic self-advocacy community. I will say autistic people
rather than person with autism.
I will say someone is autistic
rather than has autism.
I will refer to autism spectrum condition
or on the autism spectrum,
and not autism spectrum disorder
except in explicit references to the Diagnostic and Statistical Manual (DSM) or in quotes.
I will refer to support needs rather than functioning labels (low support needs
rather than high functioning
) if I must refer to an autistic person’s support needs at all. I will refer to traits
and not symptoms.
I will say non-speaking
rather than non-verbal.
Similarly, I will be more likely to use words like more obvious
rather than severe
to describe an autistic person’s outward presentation. This one might be a little controversial, but I feel that distinguishing between autistic people who present differently is a must, and this was the clearest and least offensive term I could come up with.
While there may be similar challenges at some level, my life and the life of an autistic person who does not speak are quite different in meaningful ways.
I also usually say that an autistic person can
have a particular trait, rather than autistic people do
have a trait. Autistic people are significantly different from each other. It rarely makes sense to say that autistic people are all one way or another. This book will look at trends, not absolutes. When the topic is autism, absolute statements are often impossible to make.
Most importantly, I will use neurotypical
rather than normal.
Neurotypical simply refers to people who are non-autistic, but in neurodiversity circles, it can also mean people who do not have other developmental or learning conditions, such as attention deficit hyperactivity disorder (ADHD) or dyslexia. For those unfamiliar with neurodiversity circles, neurotypical is a neutral descriptive term. It’s not a bad thing to be neurotypical.
Referring to neurotypicals as normal,
which has been standard for a lot of the history of autism, implies autistic people are abnormal. This makes many people feel stigmatized. I have no desire to offend or provoke discomfort.
I have stronger personal feelings about some of these terms than others, but the autistic community is understandably sensitive about this in a way that is not equivalent among researchers, professionals, or even family members. I also do not believe using these terms takes away from any truth I wish to present in this book.
There are some language practices of the self-advocacy community I will not use. Some members of the community capitalize Autism and Autistic, as a way of signifying they are talking about an identity rather than an adjective for a person. I feel that this is too jarring and esoteric for a broader audience and is much more entrenched within the autistic community than outside. I will use the lower case autism
or autistic.
I have also italicized sections of the book that contain practical advice for neurotypical people. I am grateful to my editor and others who read the book in advance for emphasizing a need to stress practical advice in this book. This gives a purpose to the theoretical discussion essential to setting up the foundation for this advice.
I hope the reader will examine the context as well, as it is essential to understanding why the practical advice matters. I hope this format makes the take-aways clear.
Introduction
My mom has told me this story since I was young.
When I was two years old, myself, my parents, and my then-in-utero sister were in Indonesia because of my father’s work at an American engineering firm.
My father, who is a Dutch-descended Canadian, played soccer on a team of Dutch internationals in a local recreational soccer league. This brought me to soccer games played against other teams of other inter-national residents.
At the time, and sometimes still today, I was often noticing less of the game and more of the small details of interest to me. On this day, I was particularly interested in the numbers on the players’ backs. By this age, I had already started to read in English and could sound out words in both English and Bahasa Indonesian.¹
I looked at one of the players’ backs, where I saw their jersey number was nineteen, and I said out loud, Nineteen,
and then, sembilan belas,
which is the same number in Indonesian. Overhearing this, a woman came over to my mom and asked her how old I was. When my mom replied, the woman remarked how unusual it was for someone my age to know a number that high in two different languages.
This was an aha moment for my mom. I was different. Noticing these sorts of small details is a classic sign of a way of thinking called autism.
Within a year of this conversation at the soccer game, I got a diagnosis of pervasive developmental disorder — not otherwise specified (PDD-NOS), a now-defunct diagnosis that was incorporated into a broad autism spectrum disorder in 2013. This PDD-NOS diagnosis was later changed to Asperger’s syndrome when I was eleven, another autism-related diagnosis absorbed under the broad autism umbrella.
This diagnosis, and the traits it describes, has affected my life, my identity, and my outlook on the world.
These diagnoses were reflective not just of odd skills like being able to count high but also of more irritating traits to others. I was an abnormally picky eater, who at the age of three would only eat white-coloured foods like potatoes and meats. Even to this day, certain foods, like most fruits and especially bananas, can be deeply unsettling to even smell, never mind eat.
Once I started school, my attention and hyperactivity became an issue and a distraction, and I was even put on Ritalin (which didn’t work). I was a nice kid whom teachers liked, but I had difficulty making friends my own age. On one day, I could recite dozens of statistics from memory to the astonishment of my classmates and adults; another day, I was sitting alone at recess or being teased for jumping up and down and flapping my arms repeatedly, one of my stims
displayed during my excited periods.
Due to the attentiveness and proactiveness of my parents, however, there was not a time in my life that I did not know that I was autistic and, therefore, why all this was happening. This part of my identity predates almost everything else about me, from my strong interests in music, history, and politics to a consciousness of my moodiness and chatty nature, especially when comfortable and on a topic of interest.
Autism likely influenced all of this. It is the oldest and most constant part of my identity.
There is a lot of literature about people like my three- or even ten-year-old self, but these young, different children eventually grow up, like anyone else — and they’re still autistic. This part of autism — the adult part — has seldom been written about, especially in a comprehensive and systematic way for a general audience.
That’s where this book comes in.
In part 1, I will talk about the history and basic traits of autistic adults. I will look at autism’s two core diagnostic criteria from the perspective of clinicians, parents of autistic adults, and autistic adults themselves. You will, I hope, start to get to know autistic adults and understand their lives after finishing this section.
In part 2, I look at four personal and societal challenges that autistic adults face. These are issues with lack of data, lack of resources and employment, lack of understanding from society, and lack of understanding of themselves, especially given the messages autistic people often get from others within neurotypical society.
This book may be of interest to autistic people, researchers, and professionals. Much of the information in this book will be less likely to be new for these groups, but its comprehensiveness means even they may learn something.
Mainly, this book is written for neurotypicals — those who are not autistic. This is the most important group in autistic adults’ day-to-day lives. They are who autistic people are most likely to interact with in their families, at the grocery store, or in their jobs. This is the group that needs to hear their stories the most, because they often have the most impact on an autistic person’s well-being.
The person I imagine may get something out of this book is the person who knows an autistic adult in their life. Maybe they work with autistic colleagues or they manage autistic people, and they hope to get them more involved in social activities or help them be less anxious at work. Maybe they are interested in policy and hope to learn something about broad issues surrounding autistic adults because of the implications on their work.
A person coming in with these kinds of motivations will get something out of this book.
I hope this book is accessible to everyone, while also reflecting the current state of the scholarly literature. Because I know a lot of different kinds of people may read this book, it cannot be assumed they know about the autism community. There are some important things to know about it.
Autism is a fractious field with many controversies. There are many different people with different interests. They do not just have different opinions about particulars, but different worldviews about what autism is and means.
One of the autistic people I interviewed told me that there was a major divergence between the autism community
and the autistic community.
This is a commonly understood dynamic within the autism world that is essential to understanding the rest of this book.
By autism community,
what’s generally included in this group are neurotypical parents of autistic people and certain academics and researchers, especially those who are not autistic themselves and who follow a more classic understanding of autism. Long-established organizations like the Autism Society of America, the many parents who volunteer with groups like Autism Speaks, and some mainstream child psychologists are generally seen as subscribing to this kind of view, even if they wouldn’t describe themselves this way.
This group broadly supports behaviourist schools of thought and follows the medical model of disability,
which sees autism as something as much to manage and treat than nurture and embrace.
A practitioner of a behaviourist-based therapy emphasized to me that their approach is not medical, in that they do not see behaviour as part of an illness and also look at their environment. While this is important to keep in mind, members of the autism community are nevertheless often seen as more likely to support both behaviourism and the medical model rather than one or the other.
There can be some nurturing and kindness involved in this approach. Most people in the autism community do not dislike autistic people and hope to retain qualities in them that they believe will not hurt them.
Nevertheless, the belief in helping autistic people to better fit into society is their key focus. They do this by teaching them the skills necessary to avoid stigmatization, such as how to look people in the eye or how to have reciprocal conversation. To the autistic community, they can see at least some autistic traits as something that will hold autistic people back from fulfilling their potential, as well as make them more dependent on others. They believe this is the best way to make autistic people’s lives easier.
The criticism of this approach usually comes from the autistic community.
These are usually autistic adolescents and adults who believe in the idea of neurodiversity, a movement that believes autism is one form of how brains are wired — as valid as a neurotypical brain.
The autistic community also tends to embrace some form or another of what is called the social model of disability,
which refers to the way that society disables people by setting up institutions that don’t fit their needs. A paraplegic is more disabled if they do not have ramps and elevators, for example, and autistic people can be more disadvantaged when there is too much sensory overload somewhere they should be able to access, or social communication demands are too overly complex.
Someone in the autism community might deal with this situation by helping the autistic person find ways to cope, such as bringing noise-cancelling headphones to those sensitive to loud noise. A person in the autistic community is more likely to question why the world is so loud to begin with and more likely to focus on making malls and supermarkets quieter, which they argue would benefit everyone.
Throughout this book, I will also sometimes refer to this community as the self-advocacy community.
This is a way to distinguish between autistic people active in neurodiversity communities and autistic people who are not involved in these communities, whatever their beliefs might be.
Just as not all autistic people think the same, there are also some parents, researchers, and professionals who subscribe to something more like the social model of disability and neurodiversity.
The perspective of both groups is essential to understanding the world of autism. Many parents and clinicians have a perspective of looking after a more obviously autistic person, someone who requires a high amount of attention and care to get through life.
In contrast, the self-advocacy community often brings the perspective of less obviously presenting adults. The autistic community, therefore, tends to look at issues through this experience.
Both the autistic and autism communities’ perspectives make sense given their fundamental assumptions and starting points.
I interviewed people who broadly represent both communities in this book. I read the writings of both and talked to some people who do not cleanly fit either description. I believe the moderate wings of both communities have good intentions and have strengths and weaknesses in their approaches. In many ways, they are also not mutually exclusive. Throughout this book, it will be clear that there are areas that both communities commonly see as meaningful.
However, both communities tend to dislike each other, which can sometimes lead to expectations that a book like this will represent one side or the other. As an autistic person, I see the autistic community perspective more readily, but if anyone from either community is looking for me to be their voice, they are reading the wrong book.
I come to very few absolute conclusions or recommendations in this book, particularly because of the high stakes and the controversial nature of the subject. This is not an advocacy book at its heart. With my background as a non-expert, I feel I would do more harm than good trying to provide too much strong advocacy on policy and autism research especially. I wrote this as a way of presenting the issues to someone who may have never really engaged with them, while not strongly advocating for one side or another.
The recommendations that I do come to in this book are largely to find points of agreement between the autism and autistic communities, as I do believe this will be necessary in the long run for the well-being of everyone in both communities.
I certainly do not recommend any sort of medical treatment in this book.
What I do try to do is to explore these topics, both at a factual and an emotional level. I try to make them understandable to a layperson. If people who subscribe to various perspectives believe I have done them justice, then I feel I have done my job.
A reader may also notice a largely North American bias to this book. This is mainly related to the fact that I’m Canadian, live in Canada, and have direct experience with how autism is treated in North America. I simply understand it the best.
This bias, for instance, will mean there is much more attention to the Diagnostic and Statistical Manual rather than the International Classification of Diseases, which is more often used in Europe. Many global studies are cited, but most of the information centres on North American research and institutions. The people I interviewed were also mostly but not solely from North America.
While there are cultural and economic differences that affect autistic people, the autistic experience has similarities everywhere, so I hope people from around the world reading this can find something that is useful to them.
As a note to autistic people, nothing in this book should be taken as meaning something specific to them. A major criticism of current autism research from the self-advocacy community is that it tends to approach autism as a pathology first, without seeing life from an autistic person’s point of view. This is often seen as disrespectful of an autistic person and may make them feel personally attacked, with a common response being something like I’m autistic and I’m not like that.
I understand this criticism on a deeply personal level. I do write about some of the broad downsides of autism in this book because they exist and should be talked about, and some people may take this personally. If they read that something applies to a lot of people but know it does not apply to them, they should trust their own intuition before my words.
If this book helps an autistic person feel better and understand themselves, as I suspect some parts might, that is a welcome by-product. When talking about the tendencies of any group, there will always be exceptions, especially with autistic people.
The story of autistic adults is one that has been seldom told. Autistic adults have created a lively community, which despite serious divisions is a wonderful place overall, and their stories and traits deserve to be understood by the whole society. Growing up as an autistic person brings with it an experience of life as full as anyone else’s — in some ways maybe even just a little bit more.
I hope the reader will get a glimpse of that story in this book.
Part 1
Chapter 1:
A History and Overview of Autism
To understand autistic adults, it’s important to understand autism itself. Autism is best viewed as both a disability community and a culture. Although they should both be equally kept in mind, let’s start with the disability aspect as it provides the basics.
Autism is a genetically based developmental condition that is also influenced by environmental factors. Autism is always present from birth, but a diagnosis can usually be reliably made when the person is around eighteen months old. A diagnosis at two years old is considered very reliable.
¹
What does a developmental condition
mean? This means autism affects how a person’s brain develops throughout the course of their life. The simplest way to explain this is by comparing a neurotypical person’s life to an autistic person’s.
A neurotypical person is more likely to make verbal sounds by twelve to eighteen months old; read and write at age five; make friends in childhood; have a romantic relationship in their teens and get married and have kids in adulthood.² Of course, not everyone follows this path exactly. However, those who don’t do it for reasons other than having a developmental condition. They can do this out of choice, like being in the clergy and taking a vow of celibacy, or they could also do this because of mental or physical trauma, which can affect people’s perceptions and abilities.
For autistic people, if they make these milestones at all, they are more likely to be unconventional in how and when they do meet them. This is because of challenges they have in doing so that are directly related to their neurological development.
Autism is diagnosed by a psychologist through studied observations of behaviour and often other assessments, which can include interviewing family or close friends or hearing tests to rule out deafness as a cause of speech difficulties.³
The psychologist is guided by criteria in the 5th edition of the Diagnostic and Statistical Manual, often shortened to DSM, to make a diagnosis. Two core DSM criteria form autism spectrum disorder,
as the official diagnosis is called: current or past issues with social communication
and restricted and repetitive behaviours.
Social communication
has three subcategories, as quoted in the DSM: difficulty holding a conversation, issues with non-verbal communication, and problems forming and maintaining friendships. Restricted and repetitive behaviours
has four: unusual repeated self-soothing activities, such as rocking back and forth; strict routines; intensely focused topics of interest; and issues with the sensory environment, which include sounds being too loud, sights being too bright, or tastes being too intense.
A person must have both core criteria to be diagnosed as autistic. They also must have all three social communication subcategories and at least two of the four restricted and repetitive behaviours.⁴ After being diagnosed, the person is often assigned at Level 1, 2, or 3. These levels refer to how much external support