## Autistic Community and the Neurodiversity Movement

*Edited by* Steven K. Kapp Stories from the Frontline

## Autistic Community and the Neurodiversity Movement

## Steven K. Kapp Editor Autistic Community and the Neurodiversity Movement

Stories from the Frontline

*Editor* Steven K. Kapp College of Social Sciences and International Studies University of Exeter Exeter, UK

Department of Psychology University of Portsmouth Portsmouth, UK

ISBN 978-981-13-8436-3 ISBN 978-981-13-8437-0 (eBook) https://doi.org/10.1007/978-981-13-8437-0

© Te Editor(s) (if applicable) and Te Author(s) 2020. Tis book is an open access publication. **Open Access** Tis book is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license and indicate if changes were made.

Te images or other third party material in this book are included in the book's Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the book's Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

Te use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specifc statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use.

Te publisher, the authors and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. Te publisher remains neutral with regard to jurisdictional claims in published maps and institutional afliations.

Cover image: Ryan Smoluk

Tis Palgrave Macmillan imprint is published by the registered company Springer Nature Singapore Pte Ltd. Te registered company address is: 152 Beach Road, #21-01/04 Gateway East, Singapore 189721, Singapore

## **Foreword**

Tis book describes some of the key actions that have defned the autism rights branch of the neurodiversity movement since it organized into a unique community over 20 years ago. Te actions covered are legendary in the autism community and range from "Te Autistic Genocide Clock" through to the "Institute for the Study of the Neurologically Typical", and famous pieces of work like "Don't Mourn for Us".

Tese acts have forged new thinking on autism and established the neurodiversity movement as a key force in promoting social change for autistic people. It is primarily autistic activists who have been at the vanguard of the neurodiversity movement. All but two of the 21 contributors to this volume identify as autistic. Te collection describes the biographies and rationale of key activists **in their own words**, thus the motto of disability rights activism "nothing about us without us" is a guiding tenet for the book. Te phrase (and this volume) are rooted in the concept of *standpoint epistemology*. A standpoint position claims that authority over knowledge is created through direct experience of a condition or situation. Standpoint epistemology is related to the idea of lay expertise, which is discussed extensively in the sociological literature. So, the book values the experience of autistic people as a source of knowledge about their own plight. Te volume acknowledges that individual contributions are shaped by contributors' political and social experience as well as their lived understanding of autism. Standpoint theory suggests inequalities foster particular standpoints, and that the perspectives of marginalized and oppressed groups can generate a fairer account of the world. Individuals from such groups are in a distinctive position to call out forms of behavior and practices of the dominant group, hopefully leading to social change. Tis collection illustrates the perspective of each contributor's unique voice. But together, the chapters powerfully illustrate the sense of a group with a shared point of view, united in a common movement.

Enormous credit goes to the Editor, Steven K. Kapp, who bought this volume together and was able to simultaneously command the trust of the autism activist community and the respect of the academic community—not an easy balance to get right!

Te hope is this book will provide a reference text for readers interested in the history and ideas of the neurodiversity movement and how these ideas have shaped production of expert and especially lay knowledge about autism. However, the neurodiversity movement has been problematized by both parents and academics for being unrepresentative and divisive, and the book also addresses some of these critiques.

Te target academic audience is primarily undergraduates and scholars in sociology, history of medicine, and psychiatry. Tis collection of activists' stories should act as a reference text useful as a source for further academic debate and analysis. Another important set of readers are parents wishing to learn more, and of course autistic persons themselves. Our generous funder, the UK's Wellcome Trust, has supported the publication of this volume on an open access platform to make it available for free online.

Te book is not a complex analysis or a "celebratory" piece; instead it ofers raw frst-person accounts, relating how and why activists have contributed. It aims to preserve and document the stories of some of the original activists whose voices helped shape and inspire the fedgling neurodiversity movement.

Enjoy!

Exeter, UK Ginny Russell

## **Preface**

Tis book has emerged from a postdoctoral research fellowship within sociology in the U.K. as part of the Wellcome Trust-funded project *Exploring Diagnosis: Autism and the Neurodiversity Movement*, which includes academic engagement with the movement as well as critical analysis of its position. Te following chapters provide an overview of the neurodiversity movement, describing the key actions of autistic activists in the movement between 1992 and the present day, in their own words. Although previous books have provided coverage of the history of autism inclusive of the neurodiversity movement as narrated by a journalist or researcher [10, 12] or featured anthologies of contributors from autistic people published within the movement [1, 3, 9], this edited collection provides the frst history of the movement from frsthand accounts of members of the autistic community and both autistic and non-autistic parent movement activists. Following my introduction to the movement and contributions, the book contains 19 chapters by 21 authors organized into parts about the forming of the autistic community and neurodiversity movement, progress in their infuence on the broader autism community and feld, and their possible threshold of the advocacy establishment. Tis is followed by a description of some critiques of the movement, and I follow with the conclusion.

Te *Exploring Diagnosis* project research inquires into how diagnosis catalyzes mobilization, focusing on autistic adults and the neurodiversity movement (NDM). Te project aimed to assess what the understandings of neurodiversity are among autistic adults. Ginny Russell, the project lead, and I conducted a thematic analysis [2] of autistic adults' responses to the question "What is neurodiversity in your own words" from a study I co-led with Kristen Gillespie Lynch et al. [4]. Russell and I found that the data largely mapped onto defnitions autistic adults in the movement have given [5, 11] defning the NDM as encompassing both human biological diferences in cognition, brains, and genes while also serving as an activist tool for change toward acceptance and inclusion of autistic and other *neurodivergent* people. Responses described neurodivergent people as socially oppressed and stigmatized, yet possessing valuable diferences that should not be cured but instead supported with rights and accommodations. Considering that research participants knew of but did not necessarily subscribe to the movement, the consensus that emerged suggested clarity about the meaning of (the) neurodiversity (movement) as understood by aware autistic adults. Indeed, the descriptions of these terms from contributors to this book who chose to put them forward, aligned well with those in both the popular literature and aforementioned analysis.

As contributors (including myself) make clear, we think autism involves strengths and weaknesses that amount to both a diference *and* a disability, and do not consider autism an advantage overall but see autistic people as socially disadvantaged. No one emphasized strengths overall or highlighted particular strengths, but we take a "big-tent" approach to autism that recognizes no one's worth depends on having particular talents or abilities. Te *Exploring Diagnosis* project corroborated this further by interviewing autistic adults in the UK about the strengths participants think autism confers, which almost everyone identifed, and yet they mentioned moderating infuences that could make these traits function as challenges [8].

Conversely, the book most addresses the question of what political activities the NDM has taken part in, and how these have challenged the notions of diagnosis and intervention for autism. Te contributors illustrate notable examples of the manifestos (both ideological and as applied to policy), mailing lists, websites, conferences, issue campaigns, academic projects and journals, books, organizations, and advisory roles to parent- and professional-led bodies that constitute some of the range of the neurodiversity movement's political activities. Tese actions have had widespread impacts toward an emerging view among families, practitioners, researchers, and the public on autism as *both* a diference and disability.

## **Positionality Brought to the Book**

I am both an autism scholar and an autistic neurodiversity activist, so while I seek to maintain high standards of rigor and fairness in editing this collection, it may refect this positionality. In 2007 Scott Robertson, the co-founder and then Vice President of the Autistic Self Advocacy Network, reached out to me privately on Facebook and undertook a mentorship role in which he introduced me to the neurodiversity and disability rights movements. At that time, as an undergraduate, I lived in my hometown of Los Angeles in the world's region (Southern California) most dominated by the mainstream medical and alternative medical autism establishment. Groups like the Center for Autism and Related Disorders (CARD) and the Lovaas Institute anchored the provision of therapy based in applied behavioral analysis designed to "recover" autistic children, alongside the parent-based advocacy organization Cure Autism Now (which the similar organization Autism Speaks absorbed that year). Meanwhile, groups such as Talking About Curing Autism (TACA) and Generation Rescue (both represented around this time by Jenny McCarthy, "Ph.D. in Google Research" [6]) spread potentially deadly disinformation including vaccine skepticism and chelation therapy. Amid this hostile climate, I decided to earn an actual Ph.D. (in educational psychology) at the heart of the medical model of autism research, the University of California Los Angeles, to learn the thinking and language of mainstream science to better critique them. Over this time I observed early autistic leaders (most prominently Jim Sinclair) become much less active, and their products become increasingly difcult to access, such as websites no longer hosted or archived. Leaders of autism's cure movement took down materials as well, but this more often happened to obscure their more outrageous products in response to autistic-led resistance, as they usually have the resources to continue displaying them (see Rosenblatt [7] for examples). Te need to preserve and document the history of the autistic community and neurodiversity movement had become apparent. Like my career, the book merges science and advocacy, intended for both academia and the autism community.

Exeter, UK Steven K. Kapp

## **References**

## **Acknowledgements**

I wish to acknowledge the generous support of the Wellcome Trust, the grant of which (108676/Z/15/Z) funded my time producing the book as part of the project Exploring Diagnosis: Autism and Neurodiversity at the University of Exeter. Tank you also to Dr. Ginny Russell, Daisy Elliott, and Rhianna White of the Exploring Diagnosis project. Ginny's inclusion of me and a book as part of the project made this specifc edited collection possible, and her vision, work with me on the application, supervision of the process, and contributions critically supported the product's scholarship. Daisy's administrative support helped to keep me organized and allowed me to focus on the content. Rhianna's assistance with formatting and proofreading came in timely fashion, helping me to deliver the main manuscript. Also at the University, Professor Brahm Norwich provided invaluable, steady mentorship on editing the book. Too many people have shaped my development and career to acknowledge when thinking beyond the production of the book, but within that domain I would like to thank Josh Pitt of Palgrave Macmillan for commissioning the book and Sophie Li of Springer Nature for assisting the publication process with a positive approach, patience, and fexibility.

Te autistic community members and activists deserve recognition not only for their contributions to the neurodiversity movement, but also thanks for the time and efort in producing heartfelt, well-written chapters. Ari Ne'eman provided input that shaped the direction of the book, most directly through helping with selecting and recruiting authors. Ari and Dr. Scott Michael Robertson created a vehicle for my activism through co-founding the Autistic Self Advocacy Network, and I am indebted to Scott for introducing me to the disability rights and neurodiversity movements and providing patient, knowledgeable mentorship. Nick Chown produced a professional index that beneftted from his insider status as an autistic neurodiversity scholar. Ryan Smoluk created the cover art, "Te Path (Planning Alternative Tomorrows with Hope)", which ofers a brilliant image from a member of the autistic community that resonates with work of the neurodiversity movement and spirit of the book.

## **Contents**

## **List of Figures**

## **1 Introduction**

**Steven K. Kapp**

This book marks the first historical overview of the autistic community and the neurodiversity movement that describes the activities and rationale of key leaders in their own words. All authors of the core chapters consider themselves part of the autistic community or the neurodiversity movement (including a couple among the growing legion of non-autistic parents), or both in most cases. Their first-hand accounts provide coverage from the radical beginnings of autistic culture to the present cross-disability socio-political impacts. These have shifted the landscape toward viewing autism in social terms of human rights and identity to accept, rather than as a medical collection of deficits and symptoms to cure. The exception to personal accounts and part of the impetus for the book, Jim Sinclair, has become inactive since leading the autism rights movement's development

S. K. Kapp (B)

College of Social Sciences and International Studies, University of Exeter, Exeter, UK

e-mail<EMAIL_ADDRESS>
Department of Psychology, University of Portsmouth, Portsmouth, UK

of culture and identity after co-founding its first organization Autism Network International (ANI) in 1992. Yet this book respects the disability rights motto of "Nothing About Us Without Us" by commissioning an autistic historian and chairperson of an organization inspired by ANI's historic autistic community retreat to analyze the context and impact of Sinclair's legendary work. Similarly, I am an autistic neurodiversity activist (a role that precedes my career as an autism researcher), but I endeavor to apply robust scholarly standards to editing this collection (see the Preface).

## **Introduction to the Neurodiversity Movement**

Many descriptions arguably misunderstand the concept of *neurodiversity* and the framework and actions of the *neurodiversity movement*, so this chapter seeks to explain them before introducing the core chapters.

The term *neurodiversity* originates from the autism rights movement in 1998 from Judy Singer on Martijn Dekker's mailing list InLv, but as the movement has matured into a more active part of a cross-disability rights coalition, the term has evolved to become more politicized and radical (a change noted by a few contributors, especially Dekker in Chapter 3). *Neurodiversity* has come to mean "variation in neurocognitive functioning" (p. 3) [1], a broad concept that includes everyone: both *neurodivergent* people (those with a condition that renders their neurocognitive functioning significantly different from a "normal" range) and *neurotypical* people (those within that socially acceptable range). The *neurodiversity movement* advocates for the rights of neurodivergent people, applying a framework or approach that values the full spectra of differences and rights such as inclusion and autonomy. The movement arguably adopts a spectrum or dimensional concept to neurodiversity, in which people's neurocognitive differences largely have no natural boundaries. While the extension from this concept to group-based identity politics that distinguish between the neurodivergent and neurotypical may at first seem contradictory, the neurodiversity framework draws from reactions to *existing* stigma- and mistreatment-inducing medical categories *imposed* on people that they *reclaim* by negotiating their meaning into an affirmative construct. People who are not discriminated against on the basis of their perceived or actual neurodivergences arguably benefit from neurotypical privilege [2], so they do not need corresponding legal protections and access to services. I have observed little serious aggrandizement of neurodivergent people or denigration of neurotypical people, but satire has been misinterpreted (Tisoncik, Chapter 5) or rhetoric misunderstood due to disability-related communication or class differences.

#### **The Diversity in** *Neurodiversity*

Although the people for whom the neurodiversity movement advocates far exceed autistic people, they also fall outside the main scope of the book. Some contributors' topics do include campaigns directly affecting people with other disabilities, such as that to close the tortuous Judge Rotenberg Center in the U.S. (Neumeier and Brown, Chapter 14) and to pass the Autism/Neurodiversity Manifesto in the U.K. (Craine, Chapter 19), yet the movement remains led by autistic people. Mainly though, the scope of the movement remains unclear; at a disability studies conference I asked participants how they felt about minimum criteria for eligibility within it, but they felt uncomfortable posing limits [3]. A woman suggested her multiple sclerosis should qualify; indeed, coverage of people with not only chronic illnesses but also primary sensory disabilities like blindness and psychiatric conditions like schizophrenia remain unclear [4]. One issue may be the importance of the cure issue to the movement; for example, an autistic neurodiversity activist advocates for acceptance for autism but a cure for epilepsy (which she sees as separate from her sense of self and understands as potentially fatal). Such neurological conditions fall within the broader disability rights movement and deserve basic rights accommodated, such as, arguably, policy to ban flash photography in public places that could trigger seizures in people with photosensitive epilepsy [5]. The primacy of biology to the movement seems clear due to the *neuro*- in *neurodiversity*, and debates as to whether relevant neurodivergences must be neurodevelopmental or can be acquired environmentally or in adulthood have taken place in the U.K. [6]. Conditions such as schizophrenia fall within another identity-based socio-political movement (the mad pride movement, and while the neurodiversity movement may help provide a bridge to the disability rights movement, many adherents do not view themselves as disabled [7]. More importantly and practically, campaigns to attribute these conditions to the brain have backfired, likely because the public often associates them with violence and thinks brain-based conditions are more difficult to treat [8, 9]. Ultimately, book contributors did not exclude any particular conditions from the domain of the movement, and the right to self-determination offers the opportunity for other people to identify and organize within the movement.

While some activists say *neurodiversity* refers simply to a biological fact of this variance as opposed to the movement [10, 11], contributors to this volume—as aware autistics do generally: see Preface—suggest the term implicitly refers to a tenet of inclusion based on universal rights principles, with an emphasis on those with neurological disabilities. This includes aspirations of full inclusion in education, employment, and housing; freedom from abuse (e.g. abolition of seclusion and both chemical—that is, overmedication to control behavior—and physical restraint); and the right to make one's own decisions with support as needed. Contributors evoke "the compassionate, inclusive flavor of the word" (Seidel, Chapter 7) and "human rights concept" (Greenberg, Chapter 12): "the specific premise of neurodiversity is full and equal inclusion…Neurodiversity is for everyone" (daVanport, Chapter 11). Buckle (Chapter 8) clarifies that this inclusion involves interaction between diverse groups even in settings prioritized around the needs of a particular group: neurodiversity "means having NTs [neurotypicals] in autistic space as much as it does autistics in NT space". Raymaker (Chapter 10) explains both parts of the compound word: "Neurodiversity, to me, means both a fabulous celebration of all kinds of individual minds, and a serious, holistic acknowledgement of the necessity of diversity in order for society to survive, thrive, and innovate", which as Garcia (Chapter 17) states requires that society "welcome neurodivergent people and give them the tools necessary to live a life of dignity". Inspired by the principles of other social justice movements, the neuro*diversity* movement recognizes intersectionality (how neurodivergent people's disadvantages are compounded by other types of social oppression) beyond cross-disability solidarity, such as race (see Giwa Onaiwu, Chapter 18), gender including gender identity (see daVanport, Chapter 11), and class (such as the call by Woods [2017] for universal basic income).

Like the far-reaching concept of *diversity*, the neurodiversity movement as applied to autism functions inclusively, in that activists include nonautistic people as allies, and it accepts and fights for the full developmental spectrum of autistic people (including those with intellectual disability and no or minimal language). Marginalization of non-autistic people by nonautistic relative-led autism organizations catalyzed the movement (Pripas-Kapit, Chapter 2; [12]). Thus it seeks to help families with advocacy for acceptance, understanding, and support that can positively impact people across the autism spectrum and their parents [13]. Celebratory acts for parents toward autistic children such as learning to speak their child's language and even accepting autism as part of their child's identity, and ameliorative acts like parents teaching their child adaptive skills to cope in wider society, both show nearly universal support among the autism community—including "pro-cure" parents and "pro-acceptance" autistic people [14], yet many of the more powerful parental organizations have behaved in dehumanizing and polarizing ways toward autistic people, such as using fear and pity as fundraising strategies and seeking an end to all autistic people regardless of their preferences (daVanport, Chapter 11). They have appropriated self-advocacy by using language such as "families with autism" (whereas if anyone "has" autism, autistic people do). They have also claimed autistic people cannot advocate for public policy affecting their children (even though some autistic activists themselves have intellectual disability, language impairment or no speech, epilepsy, gastrointestinal disorders, self-care needs such as toileting or daily living, meltdowns, etc., or their children do: [15, 16].

#### **The** *Neuro*- **in** *Neurodiversity*

While the neurodiversity movement generally views autism as natural and essentially innate, despite the inability of clinicians to identify itfrom birth, this viewpoint transcends politics despite its utility in activism. Autistic people tend to view autism as arising entirely from biological causes, with no evident influence from the movement [14]. This may occur both

because autistic people likely cannot remember their life before autism becomes diagnosable, and because autistic people more often conceive of and describe autism from the inside, referring to internal processes such as thoughts, emotions, and sensations rather than behavior [17]. This conception of autism privileges lived experience, and complements autistic activists' arguments that underlying differences and difficulties persist despite coping mechanisms that may behaviorally "mask" autism, which have support from neuroscientific and other research [18]. Such a phenomenon helps autistic people counter the attack "You're not like my child" from parents; see the group blog We Are Like Your Child (http://wearelikeyourchild.blogspot.com/). It also facilitates a neurological kinship of sorts with fellow autistic people, helping us to emphasize within-group commonalities to develop a sense of community despite variability in how our behaviors present, and to argue for our rights based on what Silverman [19] calls "biological citizenship". An inside-out viewpoint of autism also helps advocates of neurodiversity explain adaptive reasons *why* autistic people engage in atypical behaviors, such as "stimming" (e.g. body rocking and hand flapping: Kapp et al. [20]; Schaber [21].

Importantly, brain-based explanations facilitate the movement's compatibility with alliances with non-autistic parents. They reject a role in caregiving for causing autism, absolving parents of the responsibility scientists and clinicians assign(ed) to them when Freudian psychogenic theories have dominated (as they still do in France and to a lesser extent in countries such as Brazil). This may reduce parents' aversion toward listening to neurodiversity advocates describe helpful parenting practices. Many of the more successful "therapeutic" approaches involve educating others to respectfully understand autistic people's differences, such as teaching *responsive* caregiving tactics to parents that require them to "learn to speak their child's language" and communicate on their terms [13]. Researchers developed these techniques based on successful positive parenting practices in general [22]. A model that allows more for environmental contributions to autism's causation might look like parent-blaming, sparking resistance, and stifling progress. Moreover, biological explanations argue against environmental toxins as a risk factor for autism, helping to direct parents away from cottage industries based on rejected and unproven theories that offer dangerous "treatments" like heavy metal-injecting chelation therapy, chemical castration (Lupron therapy) bleach enemas, and vaccine avoidance (amid other expensive or at least ill-conceived "interventions"). Instead, biological explanations led by the neurodiversity movement help to raise ethical concerns about the basic scientific research that dominate autism research (such as the possibility of eugenics; see Evans, Chapter 9).

#### **Interaction with the Medical Model**

Although many claim that the neurodiversity movement simply supports the social model of disability and opposes the medical model, neurodiversity activists instead acknowledge the transaction between inherent weaknesses and the social environment [23, 24]. The social model of disability distinguishes between the core*impairments* inherent to medicalized conditions and *disability* caused by societal barriers (e.g. lack of assistive technology and physical infrastructure to enable someone with a mobility disability to move where they want to go), which for autism especially include social norms that result in misunderstandings and mistreatment [25]. One of the social model originators Mike Oliver [26] explained that he never advocated it as all-encompassing or intended it to *replace* the individual (medical) model, but to serve as an academic-political tool to help empower disabled people by emphasizing attention to the social obstacles that unite us; that it has certainly done. Yet the impairment that the model separates from disability may certainly add to any individuals' struggles. In practice this means that the neurodiversity movement begins with its goal of quality of life, which includes but surpasses adaptive functioning (e.g. self-determination and rights, well-being, social relationships and inclusion, and personal development: Robertson [27]; see also Tsatsanis et al. [28]), and works backward from there to address the individual *and* social factors that *interact* to produce disability. In contrast, a "pure" medical model approach would assume an individual's "symptoms" (behaviors or traits) directly and specifically cause dysfunction or disability, and work to disrupt this linear relationship by preventing or curing the condition. Yet the disability rights movement has already helped enshrine access (e.g. reasonable accommodations) and non-discrimination into law, and medical practices have gradually changed to allow more patient and client autonomy [29]. Indeed, social and medical models have moved toward one another over time [24].

The neurodiversity movement's opposition to "curing" autism has produced misunderstandings, such as mistaken assumptions that it attributes all challenges to social injustices and rejects interventions to mitigate them. While the movement disagrees with certain principles, means, and goals of interventions, with those caveats, it does support therapies to help build useful skills such as language and flexibility. It opposes framing these matters in unnecessarily medical or clinical ways; arguably all interventions that have a scientific evidence base for truly helping autistic people's core functioning involve active learning (by the autistic person or others), and therefore one might describe them as "educational". It recognizes that some behaviors associated with neurodivergences like autism can serve as strengths (such as interests), as coping mechanisms for underlying differences that can prove challenging at times (such as forms of stimming like hand flapping and body rocking, which help to self-regulate and communicate overpowering emotions, among other functions: Kapp et al. [20]; Bascom [30]), or as inherently neutral differences (such as an apparently monotone voice or a preference for solitude: Winter [31].

While all social movements have more radical left wings, arguably the organized, politically mobilized autism rights branch of the neurodiversity movement largely practices critical yet reformist pragmatism rather than revolution. The movement in some ways supports a Western biomedical model more than autism's medical establishment and certainly more than autism's organized cure movement. For example, the neurodiversity movement's framework conceptualizes autism itself as purely biological, as opposed to resulting from dynamic genetic-environmental interplay (as the mainstream autism field believes and as most research suggests) or at least in part from toxins in the physical environment (as many "procure" parents and their advocacy organizations have believed). Neurodiversity activists support traditional medicine for preventing and treating ill health, such as vaccines to prevent infectious diseases and (with the individual's consent) psychotropic medication to treat anxiety and depression (see Murray, Chapter 4), whereas beliefs in the likes of false and discredited vaccine-autism links have energized radical pro-cure activists, pseudoscience, and fringe medicine.

Neurodiversity supporters cling essentially to autism's diagnostic criteria when challenging even mainstream critics, as we support acceptance of official autism domains of atypical communication, intense and "special" interests, a need for familiarity or predictability, and atypical sensory processing, yet distinguish between those core traits and co-occurring conditions we would be happy to cure such as anxiety, gastrointestinal disorders, sleep disorders, and epilepsy. We, as do all of the authors for this book and the latest revisions of autism's official diagnoses ([32]; https://icd. who.int/), generally support a unified conception of the autism spectrum. Understanding and production of structural language now fall outside of autism's criteria (as a separate communication diagnosis), and neurodiversity activists have likewise supported efforts to expand access to language and communication but do not regard this as making someone "less autistic", unlike arguably most autism advocates. Autistic neurodiversity activists have defined critical autism studies not in terms of being critical of autism's existence (unlike many non-autistic thinkers outside the movement), but of the power dynamics that marginalize autistic scholars, pathologize autism, and overlook social factors that contribute to disability in autistic people [33].While we support moving to an alternative identification system that recognizes autism's nuances ([34]; Kapp and Ne'eman, Chapter 13), such as strengths that can aide or add difficulties to autistic people's lives depending on myriad factors [35], the often fractious autism community united around the need to protect autistic people's access to diagnosis because of the practical services and supports medical classification can provide. While the psychiatric and clinical establishment sharply criticized the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM) for *adding* and *expanding* most diagnoses (increasing medicalization of everyday problems) in its latest revision (DSM-5) or for lacking validity [36], the neurodiversity movement's leading organization the Autistic Self Advocacy Network (ASAN) worked more closely with the DSM-5 than any other in the autism community to protect access to diagnosis (Kapp and Ne'eman, Chapter 13).

#### **Self-Advocacy**

The neurodiversity movement's approach holds autistic and neurodivergent people responsible not for the origin of our problems (social barriers exacerbating biological challenges), but for leading the effort to solve them. This position—responsibility for the "offset" but not "onset" of problems—aligns with the compensatory model of helping and coping according to an analysis [37] of a classic theoretical paper [38]. Other identity-based social justice movements such as the civil rights movement share this approach, which Brickman and colleagues viewed as arguably superior because it encourages people to seek help (because it does not blame people for problems), yet actively exert control over their lives. Yet while they say on page 372 that the model "allows help recipients to command the maximum possible respect from the social environment" and enables mobilization, people oriented this way put enormous pressure on themselves to solve problems they did not create, risking distressing strain. Indeed, campaigners in this book noted the financial and sometimes emotional sacrifices made for their activism (Murray, Chapter 4; Seidel, Chapter 7; see also Pripas-Kapit, Chapter 2).  In contrast, the medical model holds people responsible for *neither* the causation of *nor* the solution(s) to their problems, making them dependent [38], albeit medical and clinical clients in general have become increasingly empowered in practice [29].

### **History and Introduction to Contributors**

I commissioned contributors who have made significant achievements to the development or maturation of the autistic community or the neurodiversity movement. I posed the same questions to all contributors for them to consider: why and how they got involved, how they carried out their contribution, whether it has accomplished what they intended, etc. Contributors took different approaches to addressing these questions, and while I suggested a topic (originally limited to a particular action) and length, they negotiated their preferences and needs with me. I chose to prioritize content rather than style in my editing, giving substantive feedback on drafts but deemphasizing grammar and structure, especially considering contributors' wide-ranging educational and cultural backgrounds as well as communication abilities, to preserve the voices of the activists (see also Giwa Onaiwu, Chapter 18).

The chapters follow a chronological order that reveals patterns in the growth of the neurodiversity movement over time, a historical orientation that emphasizes where the movement and autism field have been most active: the U.S. and U.K. (the home of all contributors except Dekker, who lives in the Netherlands but also spends significant time in the U.K.). These countries have had exceptional roles in pioneering mother-blaming psychoanalytic child psychology that have unjustly blamed parents and sometimes removed autistic children from them, giving rise to the first autism advocacy organizations [40, 41]. Those parent-led organizations empowered both world-leading scientific research and pseudoscience to establish autism as a treatable developmental disability [42]. Yet these nations also arguably hosted the birth of the disability rights movement (in the U.S.), the social model of disability (the U.K.), and disability studies (arguably both countries; see Waltz, 2013). Hence autistic adults had more to resist and resources at their service in these contexts, with similarities in various other anglophone countries and nations with high English fluency. Furthermore, most activities of the neurodiversity movement have taken place online, where people can participate internationally. This organizational approach to the book not only reflects not wishing to oversimplify other national and cultural contexts (e.g. Germany or Israel) with single chapters, but also the limitations of where I have lived and my social networks.

#### **Part I: Gaining Community**

At a time when non-autistic parents dominated autism advocacy in the early 1990s, Sinclair (Chapter 2) led the launch of the movement and delivered its pro-acceptance manifesto mainly intended for parents, "Don't Mourn for Us", helping autistic people gain an identity and communicate in cyberspace (ANI-L) and in person (Autreat). In 1996, Martijn Dekker's e-mail list InLv provided an inclusive, autistic-hosted space that helped spawn new ideas such as the term *neurodiversity* (Chapter 3). By 1998 Autistic activists demonstrated their ability to partner and ally with parents and non-autistic professionals on early campaigns they led, such as Dinah Murray's "Autistic People Against Neuroleptic Abuse" (Chapter 4). Laura Tisoncik's autistics.org website launched that year and gave voice to injustices such as through satire like the Institute for the Study of the Neurologically Typical (Chapter 5), yet now "neurotypical" has become a common descriptor for people without neurological disabilities in medical studies. Protest campaigns in response to specific events and initiatives have mounted, such as Mel Bagg's Getting the Truth Out website created in 2005 in response to the Autism Society of America's fear-mongering Getting the Word Out (Chapter 6), along with ongoing efforts like Autistics Speaking Day in response to Communication Shutdown and Autism Acceptance Day and Month in response to their Autism Awareness counterparts. The movement has grown to create annual events by autistic activists not in specific response to those by non-autistic people, including Autistic Pride Day launched by Amy and Gareth Nelson in 2005 and the Disability Community Day of Mourning, begun by Zoe Gross in 2012 to remember those people with disabilities murdered by family members and try to prevent future filicide.

### **Part II: Getting Heard**

These activities have helped raise consciousness that the neurodiversity movement, while arising to counter the exclusion and pathologization autistic adults felt by organizations and conferences run mainly by nonautistic parents, serves to create a world where autistic and other disabled people are free to be themselves in a respectful and inclusive society. Indeed, Kathleen Seidel (Chapter 7) has hosted neurodiversity.com as a non-autistic parent, without significant protests that an autistic does not own the domain name (Chapter 7). The historic archives, posts by autistic and non-autistic guests on debates or issues, and Seidel's counters to disinformation like false, dangerous treatments for and beliefs of causes of autism have demonstrated the movement's alliance with like-minded parents and impactful commitment to science.

Inspired by Sinclair's Autreat, Autscape (Buckle, Chapter 8) provides the longest-running ongoing example of physical "autistic space": an annual conference mostly by and for autistic people, which has demonstrated the possibilities and limits of inclusion. Beginning at a similar time, the Autistic Genocide Clock webpage publicized autistic people's fears of eugenics to prevent autism through the development of a genetic test for selective abortion, and its creator Meg Evans (Chapter 9) took it down early mainly because of the progress of the neurodiversity movement in changing attitudes toward acceptance. During the time span between the autism genocide clock being created (2005) and taken down (2011), ASAN led the movement's maturation from a sociocultural to a sociopolitical movement actively part of the disability rights coalition, organizing a protest against a cross-disability campaign that united autistic people with parents of autistic individuals and disability rights activists alike [43].

The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) project has demonstrated the expertise of even lay autistic people as the leading provider of participatory autism research (Raymaker, Chapter 10), illustrating the growing reach of the neurodiversity movement, as have other developments. The Autistic Women and Non-Binary Network (AWN) has provided powerful advocacy for intersectional feminism, as exemplified by its recent selection by the U.S. Library of Congress for preservation of its website, giving access to archives for current and future generations of advocates (daVanport, Chapter 11).

The Thinking Person's Guide to Autism provides a network of proneurodiversity and pro-science information hosted by autistic and nonautistic parents, providing the neurodiversity movement with an influential alliance that helps to reach the critical demographic of non-autistic parents (Greenburg and Rosa, Chapter 12). ASAN consulted on the revision of autism's diagnosis in the DSM-5, marking a historic collaboration that substantially affecting the core criteria and accompanying text to help maintain access to autism diagnoses and therefore needed supports (Kapp and Ne'eman, Chapter 13).

Shain Neumeier and Lydia Brown (Chapter 14) have taken leading roles in activism to stop the electric use of shocks as "treatment", raising the profile of the issue and providing strong legal and ethical arguments that have assisted progress toward banning the tortuous practice.

Larry Arnold (Chapter 15) edits *Autonomy, the Critical Journal of Interdisciplinary Autism Studies*, a journal that not only advances the cause of autistic people as editors and authors of new academic studies, but also preserves key texts of the neurodiversity movement.

John Elder Robison (Chapter 16) served as the only autistic advisor to Autism Speaks, the world's most powerful autism organization and the main enemy of the movement, and his resignation from his attempts to serve as a moderating influence contributed to reforms that have begun to soften its most contentious practices [44].

A journalist based in Washington, DC has found that a story in which he "outed" and explained himself as a member of the autistic community has led to opportunities to explain autism and disability politics in neurodiversity-affirming ways, a warm reception that demonstrates the growing public interest in autism rights and acceptance (Garcia, Chapter 17).

Morénike Giwa Onaiwu (Chapter 18) describes the principles of and her experience in editing the first anthology of autistic people of color, which in part through its publication by AWN further demonstrates the neurodiversity movement's intersectional autism advocacy [45], amid the broader autism community and media that often implicitly associate autism with whiteness [46].

#### **Part III: Entering the Establishment?**

At the present time in which autism acceptance continues to reach new heights, the neurodiversity movement has edged closer to the autism establishment, although the current status looks uncertain. A couple of current examples from the U.K. illustrate this point. In Chapter 19, Craine tells the story of how, following endorsement of the Autism/Neurodiversity Manifesto by the Labour Party's finance minister, Neurodiversity Labour was launched in February 2019. This organization, led by people with neurodivergences such as autism, ADHD, dyslexia, and dyspraxia, fights discrimination against neurodivergent people within the Labour Party and society. In addition, the National Autistic Taskforce (Murray, Chapter 20) seeks to help implement the U.K.'s principled but hardly enforced legislation such as the Autism Act 2009, which has provisions for the needs of autistic adults. This autistic-led taskforce prioritizes minimally verbal autistic people with high support needs. It grew out of the National Autism Project, which provides access to government consultations and contacts that could help achieve its aims. If the broader autism community, public, and levers of power attain a critical mass of understanding and support for the neurodiversity framework and movement, autistic people will lead advocacy for control of our own affairs.

## **References**

**Open Access** This chapter is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/ 4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license and indicate if changes were made.

The images or other third party material in this chapter are included in the chapter's Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the chapter's Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

## **Part I Gaining Community**

## **2**

## **Historicizing Jim Sinclair's "Don't Mourn for Us": A Cultural and Intellectual History of Neurodiversity's First Manifesto**

**Sarah Pripas-Kapit**

In reviewing the intellectual history of neurodiversity, Jim Sinclair's 1993 essay "Don't Mourn for Us" stands out as almost singularly influential [1]. The essay was first published in the third-ever issue of *Our Voice*, the newsletter of Autism Network International (ANI). Sinclair, an ANI co-founder, based the essay on a presentation xe delivered at the 1993 International Conference on Autism in Toronto. The essay implored parents not to mourn for their autistic child's disability, but rather to embrace their child's differences and work to meet their needs.

Even nearly thirty years after its original publication, "Don't Mourn for Us" remains a touchstone for the neurodiversity movement, cited in both casual conversations on social media as well as more academic pieces offering cultural commentary and criticism.

The essay has served as a springboard for conversations about parental expectations in the context of an autism diagnosis. Many autistic people and parents cite the piece as leading them toward a path of self-acceptance

S. Pripas-Kapit (B)

Bellevue, WA, USA

[2, 3]. A few activists have critiqued Sinclair for not going far enough [4]. Conversely, some parents have criticized Sinclair for an alleged failure to understand their perspective [5, 6].

As a historian, I am less interested in arguing about the correctness of Sinclair's views here—although as an autistic person and advocate for neurodiversity, I agree with them. Rather, I'd like to illuminate the historical context of "Don't Mourn for Us." This piece will explore how Sinclair's work fits into the broader history of autistic people's advocacy and public speech.

In the interest of full disclosure, I don't just come at this from the perspective of a historian. I attended the event Sinclair founded, Autreat (ANI) in 2008 and 2010. While in attendance, I briefly met Sinclair. Currently, I am the chairperson of the Association for Autistic Community (AAC). We sponsor an autistic community retreat, Autspace, that continues many of the same traditions of Autreat (which met for the last time in 2013). These experiences have undoubtedly shaped my perspective on "Don't Mourn for Us" and Sinclair's place in the neurodiversity movement, though this piece is primarily intended as a historicization of Sinclair's body of work.

To historicize "Don't Mourn for Us," I will begin by looking at Sinclair's contemporaries. The mid-1980s and early 1990s saw some of the first published writings by autistic people in the English-speaking world, including the works of Temple Grandin and Donna Williams. By looking at Grandin's and Williams' writings, we can better understand the radicalism of "Don't Mourn for Us."

Within this context, I will then analyze Sinclair's intellectual evolution as seen through xyr public writings. Finally, I will suggest how Sinclair and "Don't Mourn for Us" have shaped the neurodiversity movement since 1993—and how the movement has developed since.

## **Autistic Writings and the Neurotypical Audience**

The first autistic people to write for a wide English-speaking audience were Temple Grandin and Donna Williams. Grandin's autobiography, *Emergence: Labeled Autistic* was first published in 1986 by Arena Press, and Williams' *Nobody, Nowhere*, was first published in Great Britain in 1991 and in the U.S. in 1992. *Nobody, Nowhere* became an international bestseller.

Both memoirs were radical in the sense that they introduced neurotypical audiences to the idea that autistic people could narrate their own experiences and had rich internal lives. Yet they were written for a neurotypical audience, and that shaped numerous aspects of the books' publication and content.

Grandin, who was born in the U.S. in 1947 and raised in an affluent white family, enjoyed several privileges that many autistic people of her generation lacked. She was not, however, diagnosed as autistic until she was a teenager. Her initial diagnosis was "brain damage," which likely saved her from being institutionalized as a child (Silberman [7]). However, Grandin was somewhat elusive on this point in the book's narrative. As the title suggests, *Emergence* presents the narrative that Grandin was able to "emerge" (or recover) from autism.

Although this is not made explicit in the book's text, Margaret M. Scariano was listed as a co-author of *Emergence: Labeled Autistic*. Scariano's role in shaping the book is unclear, although Grandin has since authored many published works as sole author. I have not been able to find much information about Scariano, although one 2013 obituary states that she wrote or co-wrote a number of books, including both fiction and nonfiction [8]. But while the circumstances behind Scariano's contributions remain ambiguous, the book's promotion of a "recovery" narrative is clear. In my analysis of *Emergence*, I have chosen to focus on this issue rather than the complexities of the book's authorship.

This emphasis on recovery is made explicit in the book's introduction, written by noted autism scientist Bernard Rimland (Rimland became famous for debunking the refrigerator theory of autism causation). In the introduction, Rimland recounts his acquaintance with Grandin, reassuring readers that she was "really" autistic—or, in his terms, "a recovered autistic individual" (Grandin & Scariano [9]). Rimland, who later became an advocate of dubious biomedical "treatments" for autism, gushed about Grandin's ongoing recovery in the introduction. The memoir's framing hence implicitly became something of a how-to guide for autism recovery.

In addition to Rimland's introduction, the book also includes a preface from William Carlock, who taught Grandin at a private school as an adolescent. These two introductory pieces served the function of "proving" Grandin's autistic status to a skeptical audience, while simultaneously suggesting that recovery from autism was both possible and desirable.

Grandin herself suggested this narrative in the text. *Emergence* is rife with descriptions of her autistic differences, including sensory sensitivities, communication differences, and other autistic traits. Grandin, a successful animal behavior scientist, used scientific terminology to explain autistic differences. But one cannot help but be left with the impression that autism is a tragedy. She described her alleged regression into autism at the age of six months:

Mother, who was only nineteen when I was born, said she remembers me as a normal, healthy newborn with big blue eyes, a mass of downy brown hair, and a dimple in my chine. A quiet, 'good' baby girl named Temple.

If I could remember those first days and weeks of life, would I have known I was on a fast slide slipping into an abyss of aloneness? Cut off by overreactions or inconsistent reactions from my five senses?Would I have sensed the alienation I would experience because of brain damage suffered as an unborn child—the brain damage that would become apparent in life when that part of the damaged brain matured? (Grandin 2005)

Significantly, Grandin did not actually remember any of the events recounted here, since they purportedly occurred when she was a mere six months old. Rather, she created this narrative using her mother's memories and a paradigm of autism in which autism entraps autistic people into a world of isolation and misery.

Although Grandin did not take a firm stance on the always-contentious issue of autism causation, she was quite unequivocal in suggesting that autism was a tragedy not just for her, but for her entire family. The very first line of Grandin's own text stated, "I remember the day I almost killed my mother and younger sister, Jean" (p. 21)[9].

Yet the actual incident Grandin referenced was decidedly more prosaic than this dramatic opening suggests. Grandin went on to describe how, as a child, she threw an uncomfortable hat out of an open window in her mother's car. This caused her mother to lose control of the vehicle certainly dangerous, but hardly the dramatic tragedy first implied. From the very beginning of the text, the tone is set. Autism is dangerous, even when manifested in seemingly trivial things such as disliking an itchy hat.

*Nobody, Nowhere* is superficially quite different from *Emergence*. It reveals the perspective of a decidedly less privileged autistic woman. Williams, who was Australian, was not diagnosed with autism as a child. Like many other autistic people who grew up in the 1960s and 1970s, she received alternative diagnoses, including psychosis. Williams discovered that she was autistic as an adult, after going through many years of familial abuse, homelessness, and domestic abuse in relationships with men. Her lyrical prose gives the book a very different reading experience than *Emergence*.

Yet despite these important differences, there are several similarities between the works. *Nobody, Nowhere* also began with a forward from Bernard Rimland, which echoed many of the same themes as the *Emergence* introduction. Rimland praised the book for providing inside insights into autism, which he valued as a researcher and as a parent. He explained, "Much of what Donna Williams has written about the experience of autism was already familiar to me—at an intellectual level. But *Nobody, Nowhere* provides a heretofore unavailable—and alarming—highly subjective appreciation of what it's like to be autistic" [10]. According to such non-autistic "experts," autistic people's internal experiences were inherently alarming.

A second introduction, written by Australian psychologist Lawrence Bartak, also appeared in *Nobody, Nowhere*. Bartak discussed autism from a clinical perspective at length. As with *Emergence*, the multiple introductions essentially suggested that autistic people can't be fully trusted to narrate autism. Their words must first be contextualized by non-autistic "experts" who can attest to the narrative's authenticity.

This is not to say, however, that autism is presented identically in the two narratives. While *Emergence* suggested that autism trapped Grandin in an unpleasant world of isolation, Williams admitted that she enjoyed being "in her own world" at times.

Although many autistic people have since come to interrogate the notion of autistic people as being trapped in their own worlds, at the time of *Nobody, Nowhere*'s publication it remained a dominant paradigm. Williams utilizes the paradigm in many interesting ways, writing:

Everything I did, from holding two fingers together to scrunching up my toes, had a meaning, usually to do with reassuring myself that I was in control and no one could reach me, wherever the hell I was. Sometimes it had to do with telling people how I felt, but it was so subtle it was often unnoticed or simply taken to be some new quirk that 'mad Donna' had thought up. [10]

Hence,Williams showed that her autistic chances—even ones that were thought of as "mad Donna"—served a meaningful purpose for her. In this way she anticipated many of the ideas of the neurodiversity movement, including the popular notion that "behavior is communication."

However, *Nobody, Nowhere* hardly rejected the autism-as-tragedy paradigm in its entirety. Williams explained how she found the world as so hostile as a child that she created two personas to help her, Carole and Willie. She explained:

I had created an ego detached from the self, which was still trapped by crippled emotions. It became more than an act. It became my life, and as I had to reject all acknowledgment of an emotional self, I had to reject all acknowledgment of Donna. I eventually lost Donna and became trapped in a new way. [10]

Although Williams acknowledged that her response was in large part shaped by the abuse and rejection she suffered, the narrative as a whole suggested that entrapment—either in her one world or in a fictional persona of her own creation—was the inevitable result of autism. She frequently referred to herself and other autistic people as "trapped and frightened" [10]. Like Grandin in *Emergence*, Williams expressed the hope that her account would help others.

*Emergence: Labeled Autistic* and *Nobody, Nowhere* were not specifically written for a parent audience. Yet in an era where first-person accounts of autism were so scarce, it is highly likely that they played an important role in the then-small autism parent community—the intended audience for "Don't Mourn for Us."

Given the centrality of parents in "Don't Mourn for Us," it is worth examining how parents are discussed in Grandin and Williams' earlier works. For Grandin, her mother, referred to simply as "Mother" in the text, was a near saint-like figure. Excerpts from Eustacia Cutler Grandin's journal are presented at several points in the book, along with several letters to teachers and medical professionals. Even today, the two women frequently make public appearances together. Grandin has often credited her mother's decisions for her own success. (Her father appeared much less frequently in the text, reflecting the 1950s gender roles that shaped Grandin's upbringing.)

Today many autistic activists would criticize Eustacia Cutler's parenting methods, which included admonishing her young daughter for a failure to make eye contact. But Grandin herself never wavered in her admiration, presenting Cutler as a loving, no-nonsense mother who provided sage advice to Grandin throughout her life while also advocating for her needs. Indeed, many people who have heard Grandin speak in recent years myself among them—have noted Grandin's tendency to present a nostalgic view of her childhood. This includes her mother's strict style of parenting, which is particularly jarring to twenty-first-century audiences.

In strong contrast to Grandin, Williams criticized her family in *Nobody, Nowhere*.  I threw 'mentals' and couldn't act normal. 'Look at her, look at her,' they would say about a child who, to them, was either a 'retard' when I was in my own world or a 'nut' when I was in theirs. I couldn't win" [10].

However, Williams also empathized with her family. She went on to write, "Looking at it from their point of view, I guess they couldn't win, either. My brother had probably woken up to the fact that I hardly acknowledged, let alone accepted, him" [10].

In Williams' narrative, the abuse she suffered at the hands of her family becomes understandable, though not quite acceptable. Although she rejected the idea that her mother's coldness had caused her cognitive differences, rejecting the "refrigerator mother" hypothesis, she concluded that her disability likely impacted her mother for the worse.

Williams wrote, "Though [my mother] was probably a social cripple before I was born, I accept my share of the responsibility for making her one, and for robbing both her and my brother of a free, more independent relationship with each other" [10]. In a mere sentence, Williams hence reiterated an incredibly harmful view of her disability that she has internalized—the notion that her own differences caused discord within her family. According to this formulation, she was largely responsible for their problems, which included abuse from both parents and Williams' mother's alcoholism. This abusive home environment would eventually lead Williams to leave her home at the age of fifteen.

*Emergence* and *Nobody, Nowhere* might have challenged the pernicious view that autistic people lacked thoughts and feelings, but the narratives reinforce another idea: that having an autistic child is a tragedy for families.

Both Grandin and Williams offered suggestions for parents, both implicitly and explicitly. *Emergence*, for example, includes a final chapter with a bulleted list of suggestions for helping autistic children. By and large these were practical suggestions involving sensory sensitivity, diet, and related issues. Although a few tips gestured toward the direction of self-acceptance, neither writer suggested that autism was anything other than a disability to be mourned.

Then Jim Sinclair came along.

### **The Radicalism of Sinclair**

"Don't Mourn for Us" came out of the autism culture of the 1980s and early 1990s. In fact, Sinclair was friends with Williams, whom xe met on an early online mailing list for the parents of autistic people. Sinclair, Williams, and Xenia Grant formally founded ANI in February of 1992, when Williams visited the U.S. from Australia to promote *Nobody, Nowhere* [11]. Initially, ANI began as a pen pal program and a newsletter—the same newsletter which published "Don't Mourn for Us" one year later.

It is clear from Sinclair's writings in the early 1990s and later that xe was immersed in the world of autism parents and professionals. Autreat, the retreat Sinclair ran for more than fifteen years, grew out of these experiences. Sinclair, Williams, and other autistic people who attended non-autistic-run conferences found them to be inaccessible, prohibitively expensive, and sometimes downright dehumanizing.

There were a few exceptions. In 1992, Sinclair wrote very positively of a TEACCH conference xe attended in 1989 [12]. It speaks to the paucity of such events at the time that Sinclair drove 1200 miles to attend the conference. The essay, entitled, "Bridging the Gaps: An Inside-Out View of Autism (Or, Do You Know What I Don't Know?)," was published in a TEACCH anthology that also included pieces from non-autistic experts Lorna Wing and Catherine Lord [7, 12].

This 1992 piece—cited much less frequently than "Don't Mourn for Us"—provides interesting glimpses into Sinclair's intellectual evolution. More so than any of Sinclair's subsequent writings, this essay included discussion of Sinclair's personal experiences and autism-related impairments. As the parenthetical part of the title suggests, Sinclair presented the autistic experience largely as an experience of not knowing. This not-knowing experience encompassed both not knowing the norms of the neurotypical world and not knowing about one's own autistic differences.

Sinclair reflected on xyr own experiences as an autistic child who grew up in the 1960s and 1970s. They explained:

I've been living with autism for 27 years. But I'm just beginning to learn about what that means. I grew up hearing the word but never knowing what was behind it. My parents did not attend programs to learn about autism, did not collect literature to educate schools about autism, did not explain, to me or to anyone else, why my world was not the same one that normal people live in. [12]

For Sinclair, thisfeeling of isolation and not-knowing started to dissipate upon attending autism conferences. These conferences included a small number of other autistic adults. Yet at the same time, the autism conference world introduced Sinclair to a new type of isolation: being seen as an Other by non-autistic parents and professionals. To them, autistic people's experiences were something to be studied under a microscope, like an unusual virus. (Indeed, one sees evidence of this attitude in Rimland's introduction to Grandin's and Williams' narratives.) Sinclair did not care for such attitudes.

In the article, Sinclair took care to dispel myths about autistic people. The article's first subheading is "Being Autistic Does Not Mean Being Mentally Retarded," in a point that reads to many contemporary autistic activists as problematic in its failure to extend solidarity toward people with intellectual disabilities. Other subheadings are "Being Autistic Does Not Mean Being Uncaring" and "Being Autistic Will Always Mean Being Different."

But being different was not bad to Sinclair. "Bridging the Gaps" included several hints at the neurodiversity ideology that Sinclair would later articulate more fully. Xe started to articulate the idea that autistic people's impairments largely stemmed from societal factors, not inherent deficits.

Sinclair pointed to non-autistic people's assumptions as a key factor that limited autistic people. Xe criticized the special education field for being particularly unwilling to extend understanding toward autistics. Xe wrote:

Not all the gaps are caused by my failure to share other people's unthinking assumptions. Other people's failure to question their assumptions creates at least as many barriers to understanding. The most damaging assumptions, the causes of the most painful misunderstandings, are the same now as they were when I was a child who couldn't talk, a teenager who couldn't drive, and a college student who couldn't get a job: assumptions that I understand what is expected of me, that I know how to do it, and that I fail to perform as expected out of deliberate spite or unconscious hostility.

Other people's assumptions are usually much more resistant to learning than my ignorance. As a graduate student I encountered these assumptions in employers who had extensive backgrounds in special education. [12]

Sinclair did not specifically reference the social model of disability (which was much less well-known in 1992 than it is today, even in disability circles). However, xe did suggest a view of autism congruent with the social model.

These ideas would take a more fully realized view in "Don't Mourn for Us" one year later. In this piece, which has been referred to as a manifesto for the neurodiversity movement, Sinclair did not blunt xyr criticisms of parents. Xe focused on the parental tendency to "mourn" a child's autistic status. Sinclair stated,

Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child's and family's life cycle.

But this grief does not stem from the child's autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. [1]

With this declaration, Sinclair identified the source of parental grief over having an autistic child. The fundamental cause was not the inherent tragedy of disability, but rather the pernicious cultural assumption that parents ought to have a "normal" child.

Such an assumption, Sinclair wrote, was damaging to both the parent and child. Although xe acknowledged that "Some amount of grief is natural as parents adjust to the fact that an event and a relationship they've been looking forward to isn't going to materialize," Sinclair urged parents to move beyond those feelings. Xe stated simply, "Continuing focus on the child's autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them" [1].

Such sentiments are radical even today. But when we consider the relevant historical context, they become even more so. Prior to Sinclair's declaration, the default mode for autistic people discussing autism was to focus almost exclusively on their personal experiences. Even if they admitted to enjoying parts of the autistic experience (as did Donna Williams), previous autistic writers always made sure to acknowledge the pain and danger that autistic people inflicted upon family members. Sinclair told parents that their feelings of grief, while very real, weren't the result of autism per se.

"Don't Mourn for Us" also dispelled the myth of the autistic person as being in their own world, another trope that appeared prominently in Grandin and Williams' work. Sinclair explained:

You try to relate to your autistic child, and the child doesn't respond. He doesn't see you; you can't reach her; there's no getting through. That's the hardest thing to deal with, isn't it? The only thing is, it isn't true.

Look at it again: You try to relate as parent to child, using your own understanding of normal children, your own feelings about parenthood, your own experiences and intuitions about relationships. And the child doesn't respond in any way you can recognize as being part of that system.

That does not mean the child is incapable of relating at all. It only means you're assuming a shared system, a shared understanding of signals and meanings, that the child in fact does not share. [1]

In rejecting the "own world" paradigm, Sinclair also offered practical advice to struggling parents. But xe asked parents to understand their child's perspective rather than impose their own preferences and perspective on the child.

Although "Don't Mourn for Us" has oftentimes been interpreted as being dismissive of parental perspectives, Sinclair explicitly acknowledged the reality of parental grief, and the array of impairments that autistic people can experience. However, xe strenuously argued that parental grief should not be directed at the child. Xe wrote, "You didn't lose a child to autism.  […] Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you" [1].

The essay also included commentary about how parent-run autism organizations could reorient themselves to better reflect autistic people's needs and priorities. Sinclair went on to suggest, "this is what I think autism societies should be about: not mourning for what never was, but exploration of what is. We need you. We need your help and your understanding. Your world is not very open to us, and we won't make it without your strong support" [1]. Xe hence invited parents to join autistic adults in creating a better world for autistic people—but not by demanding that autistic people "recover." Rather, Sinclair's vision of neurodiversity prioritized the reshaping of social expectations and norms. Non-autistic parents had a place in this movement, but it was primarily as allies to autistic adults (in the parlance of today's social justice vocabulary).

By choosing to take this radical stance, Sinclair sacrificed much. A friend of mine who conversed with xem on the subject said that Sinclair was on track to become a professional autistic speaker akin to Grandin and Stephen Shore. After taking more radical stances on autism and neurodiversity, those opportunities were no longer open. For a time, Sinclair was homeless. Xe never found a full-time job in xyr chosen profession as a rehabilitation counselor despite obvious knowledge and qualifications.

Yet Sinclair's sacrifices have borne considerable fruit. Although much has changed since the essay's original publication, the core idea articulated in "Don'tMournfor Us" has continued to animate neurodiversity activism. Sinclair changed the paradigm with which autistic adults would approach public speech. No longer were autistic people limited to personal narratives that relied heavily on tropes of autism as tragedy or entrapment. Autistic people could—and would—articulate their own views independent of parent and professional validation. That is the legacy of "Don't Mourn for Us."

#### **Sinclair, Autspace, and the Development of Autistic Culture**

Autistic culture as it exists today would be very different if not for the considerable contributions of Jim Sinclair. However, autistic culture and the philosophy of neurodiversity have undergone substantial shifts since 1993.

One of the most notable features of Sinclair's early work is the extent to which it began as a response to autism parent and professional culture. In some ways, this is seen even in Autreat, which Sinclair designed to be an autistic space that prioritized autistic needs [11].

Take, for example, Autreat's famous "Ask a Neurotypical" panel. According to Sinclair's description at one of the Autreats I attended, the idea for the panel originated as a parody of sorts. Sinclair disdained the "ask an autistic" panels frequently found at conferences for parents and participants. Xe had participated in many such panels, in which autistic panelists were asked entirely inappropriate questions such as "do you have sex?"

Xyr idea was to turn the tables. At the "Ask an NT" panel, autistic audience members would ask non-autistic panelists the same sorts of questions. This subversive idea, focused as it was on flipping the script, was fairly characteristic of the approach Sinclair took in "Don't Mourn for Us" and throughout xyr other works.

However, xe ran into a problem when trying to implement this plan. The autistic attendees at Autreat felt that the idea was unethical, premised as it was on asking people invasive questions in public without advance warning. So Sinclair scrapped the idea and the "Ask an NT" panel turned into something very different—an opportunity for autistic adults to learn more about non-autistic perspectives in a non-judgmental environment. (In one example of this dialogue, Sinclair asked panelists why neurotypicals enjoy eating at restaurants. Aside from the obvious pleasures of someone else cooking food for you, Sinclair asked, why bother with it?)

The evolution of the "Ask an NT" panel is in some ways emblematic of autistic culture's historical trajectory. Although it originated as a response to parents and professionals, it has since grown and mutated to develop its own traditions and community norms. Certainly Sinclair played a major role in the development of autistic culture, but always in dialogue with other autistic people.

Sinclair and ANI, the organization xe co-created, did not directly engage in policy advocacy. Yet the philosophy xe established would form the foundations of today's autistic-led policy advocacy work. Ari Ne'eman, cofounder of the Autistic Self-Advocacy Network (ASAN), explained it to me this way: "I never would've founded ASAN if not for Jim. ASAN might have popularized neurodiversity, but Jim Sinclair created it" (personal communication, February 20, 2019).

It is this fundamental idea that is the greatest legacy of "Don't Mourn for Us." Popular autism narratives of the 1980s and early 1990s suggested that autistic people were primarily useful for our ability to provide "inside insights" into the autistic experience. Sinclair transformed the paradigm by suggesting that autistic people could articulate a larger vision for social change. And we could do so without capitulating to the notion that autism was inherently tragic.

Sinclair's intellectual legacy extends well beyond "Don't Mourn for Us." Xe was likely the first autistic person to reject person-first language, in a 1999 essay "Why I Dislike Person First Language" [13]. Xe also coined the term "self-narrating zoo exhibit," which described the tendency of non-autistic parents and professionals to solicit personal narratives—like Grandin's and Williams'—that treated autistic people as peculiar curiosities. In all of xyr work, Sinclair was uncompromising in xyr willingness to question dominant narratives of autism as created by both non-autistic experts and less radical autistic representatives—the ones who were more likely to get conference invitations and book contracts.

Given Sinclair's emphasis on questioning all received wisdom, there is a certain irony to the now canonical status of "Don't Mourn for Us." The piece is certainly deserving of such status, but I believe Sinclair would be the first to admit that it was by no means intended as the final word on neurodiversity as a philosophy. It's particularly important to note that Sinclair's early work was shaped heavily by parent- and professional-dominated autism culture—a necessary move at the time xe first wrote the essay. Fortunately, we have now reached a point where it is possible to start creating more of our own cultural and intellectual traditions—a process which Sinclair began. Moving forward, I'd propose that future generations of autistics embrace the spirit of Sinclair's work by continuing to question, to challenge, and to move forward with new and innovative ideas.

#### **References**

log post). Retrieved February 21, 2019 from https://thequestioningaspie. wordpress.com/2016/10/31/revisiting-jim-sinclair-dont-mourn-for-usand-some-of-my-thoughts-on-the-language-of-cure.

**Open Access** This chapter is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/ 4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license and indicate if changes were made.

The images or other third party material in this chapter are included in the chapter's Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the chapter's Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

## **3**

## **From Exclusion to Acceptance: Independent Living on the Autistic Spectrum**

**Martijn Dekker**

In 1985, as an oblivious and undiagnosed autistic 11-year-old with no idea who I really was or what my life was for, I was introduced to the amazing and captivating world of programmable home computers, who always mean what they say and say what they mean, and expect nothing less of you. Thus I acquired my most central and enduring identity, that of a computer programmer. It was then that my real social life began.

Though I live in the Netherlands, I lived most of that real social life in plain text, worldwide, in English, over a metered telephone line and a modem, at a nice and safe distance from my daily worries.The Internet was still far from accessible to mere mortals, so I used dial-up hobby computer systems called BBSs, bulletin board systems.These BBSs "echoed" personal and group email to each other by exchanging it nightly over the phone during cheap hours, thus forming a slow-lane network called Fidonet.

M. Dekker (B) Groningen, The Netherlands e-mail<EMAIL_ADDRESS>
Eventually, I became the moderator of two worldwide Fidonet echomail conferences.

While this did gave me a sense of accomplishment, I was living what others call 'real life' without a diagnosis or a clue. As I was growing into a young adult, I deteriorated. Along with depression, I developed what I now know to be catatonia-like difficulties with self-direction, such as taking any sort of initiative [1]. The depression went away later, but that mysterious and near-total inability to "just do it!" never has.

In 1995, as my education and my offline life had fallen apart completely, the Internet became accessible to the common people. On it, my mother and I discovered Asperger's syndrome. Less than a year later, I had a diagnosis of 299.00 Autistic Disorder by DSM-IV (Diagnostic and Statistical Manual of Mental Disorders, [2]) criteria.

With nothing left to lose but my family's love and support, and on a self-discovery high, I went out into the new world of the 'Net. At the time, it was nearly as textual as BBSs, but I was enthralled to find that worldwide communication was instant instead of taking days. I found a few mailing lists (email-based discussion groups) dominated by parents of autistic children and professionals, plus one managed by autistic people: ANI-L, the list run by Autism Network International (ANI), founded in 1994 and hosted by Syracuse University since 1996 [3].

By the time I entered the scene, ANI had developed a vibrant and specific autistic subculture, with verbal stims (in plain text) and various in-jokes involving fipples, llamas, and the like. It was quite wonderful to see this working so well for those who fit in. Here were, after all, people proving for the first time that autistic community is possible! But their ways were not every autistic person's cup of tea, and their community did not seem all that welcoming to those with dissenting opinions. The need for an alternative was somewhat apparent.

But in this pre-social media era, with theWorldWideWeb still a toddler, starting a group of any description on the Internet was non-trivial at best. No services existed that let you do this at the click of a button. It required the use of server software that usually was very expensive and always needed to be managed by an expert. Nor did I have connections to a university or corporation that could host it for me. So, although there was just the one autistic community, the idea of starting my own didn't occur to me.

Then I was contacted, in early 1996, by the American father of an autistic son, who was advocating for another American autistic man who I shall refer to as X. With a decades-long history of trauma, X had serious behavior problems. In part, this was a conscious decision: he was fed up with being mistreated, so, in his words, "no more Mr. Nice Guy". But it was also clearly the effect of a long history of institutionalization.

So he found himself banned from the few autism communities that existed on- and offline, including the only autistic-run one. But some people went much further: they actively spread the image of him as a direct threat, seriously and physically dangerous, apparently to ensure he would never get another chance elsewhere.

To me it was obvious that traumatized autistic people frequently have problems with bad behavior. Surely, effective advocacy would require at least making an effort to include the really difficult ones, too? It physically hurt to see some of my fellow autistic people not only eject, but also go out of their way to further damage someone who was already broken. My reaction, evoked in part by my own traumatic memories of schoolyard violence, peer rejection, and paternal authoritarianism, was visceral. I felt and understood this man's anger and desperation. Empathy! Much as I disapproved of X's methods, this reaction to them seemed so much more harmful that, despite my usual inertia, I found myself spurred into action.

Starting an Internet group seemed impossible without connections to a large organization, so I suggested that X try starting a BBS of his own, of the old-fashioned dial-up variety. He had some relevant experience and I figured that it might help him to bear the responsibility himself, to achieve something that was his own. Aiming it at people who had been "shunned, hated or misunderstood" due to being autistic or otherwise different, he set up forums on various relevant topics, with a definite activist bend. It was not networked, so I dialed in to the USA to participate at considerable expense. The BBS never had more than five users, and after a month or so, even they stopped coming. Whatever else may have contributed to the lack of interest, it was clear that with the Internet growing explosively, BBSs were on their way out.

Then, serendipity intervened. A new kind of Internet provider opened in the Netherlands, a subsidiary of a UK provider oddly named Demon Internet, after the English expression "to work like a demon" with a nod

to "daemons" as in server software on Unix and similar operating systems. They were special in not only technically enabling, but actively encouraging their users to run server software—to become a full-fledged host on the 'Net alongside giants like Syracuse University. Freeware mailing list server software called Macjordomo had also become available. Power to the people! The puzzle pieces fell into place.

I offered X the position of co-moderator, but at this point he had lost interest in taking an active role. So he took a back seat as I started it as my group. As was customary, the BBS had been divided into various topicbased forums; I decided to keep that aspect by creating several mailing lists dedicated to similar topics. I began to operate these mailing lists together as a set, so members could choose their topics of interest in which to participate.

Thus, the first entirely self-run and self-hosted autistic community on the Internet was born in July 1996, called Independent Living (InLv), with the Internet hostname of inlv.demon.nl (later changed to inlv.org). From then on, until cable internet became available in 2000, I had a routine of actively distributing group mail over the Internet through my dial-up line in batches, a few times a day. The communication was slower than ANI-L, but still much faster than Fidonet.

The group grew quickly.While some members were non-autistic friends and sympathizers, often with other neurological conditions, most of us were autistic—some recently diagnosed as adults, others seeking and receiving diagnoses as a result of their membership, still others content with having self-identified. In finding each other, we found ourselves. The collective process of self-rediscovery as autistic people that we went through as members was so intense, I stopped engaging in computer programming altogether for a number of years. I made friends, and more friends through friends, in various countries. Thus, after that of a computer programmer, I acquired my second-most central and enduring identity: that of an autistic person. It was then that I felt truly accepted in a community for the first time.

The text-only email nature of our community, far from being limiting or disabling, was found to be an advantage. We were able to skip all the social rituals and awkwardness and cut right to the chase, undistracted by body language, timing, sensory or eye contact issues, or any of the other autism-related difficulties with socializing. In the words of one member, the Internet was where "people can see the real me, not just how I interact superficially with other people" [4]. This helped us support each other more effectively. Email seemed like a natural communication medium for us autistics, like sign language is for deaf people [5].

The notion that we lack empathy was quickly deconstructed as it became clear that neurologically typical (NT) people had considerably less empathy with us than we had with them. A lot of lifelong pain was shared and empathized with. As part of processing those experiences, we started developing our own theories of neurotypicality—of why these strange people, who form the majority, do what they do. We had a bit of fun with it; tongue-in-cheek terms like "neurotypical syndrome" and "social dependency disorder" were thrown around. Some of us also felt inspired to explain ourselves to the neurotypical population using our newly found collective insight [6]. As we were so used to being misunderstood, patronized, and pathologized, it was a relief to have the shoe on the other foot.

But we also started finding things in common with each other, things that were not part of the diagnostic criteria for autism. For instance, many of us had trouble recognizing faces to various degrees, relying on other features such as voice, gait, and hair and clothing style to recognize a person. One InLv member, Bill Choisser (1947–2016), found an obscure medical term for this condition: prosopagnosia. It was thought to be very rare, but the group's experience clearly suggested otherwise. Bill popularized an easier to use term for it: face blindness. Based in large part on InLv discussions, he wrote the first book about the condition, which he published online [7]. The book gained traction and spread knowledge on the condition, and the term is now widely used.

Meanwhile, as people in and (mostly) out of the Netherlands began to take note of my activities, I began to be invited to autism conferences as a speaker. I would warn the InLv members of the impending silence when I was about to travel, then upon arrival I would find places to plug my laptop into a phone line and distribute the backlogged mail.

The feeling, at once grave and uplifting, of having an entire worldwide human community inside your laptop computer, depending on your own continued action to survive, is hard to describe. Wherever I went, they went with me. As I boarded airplanes, the announcement "in the event of an emergency, you must leave all hand luggage behind" acquired an existential level of fearsomeness.

In July 1997, when InLv was a year old, I met X in person in Minneapolis, Minnesota, USA as the two of us were invited to speak on the new phenomenon of online autistic community and activism at a conference organized by the Society for Disability Studies. In person, he seemed much more timid than intimidating. The conference speech was a success for both of us.

But on InLv, though X continued to prefer his back seat, he was growing increasingly frustrated with the members' self-discovery and mutual support, which he had begun to see as spineless psychologizing. He wanted action. The rest of us were not ready for action. He also became increasingly jealous as I gravitated toward some level of prominence in certain autistic circles. It's understandable: where he had failed, I was succeeding.

Nevertheless, his behavior deteriorated to the point where it became both detrimental to the group and personal to me. Mere weeks after our conference speech in Minneapolis, I had to remove him. He and I both know the exact reasons, and that is enough. I have avoided contact since, but I wish him well. The group had succeeded in including him for a full year. In the process I had learned some hard lessons about both the possibilities and the limits of inclusion, which proved invaluable in later years.

InLv continued without him just as the discussions had begun to gravitate from the purely personal to the more political. A new idea came up in the group, based on the evidence and lived experience that autistic brains are wired differently from the mainstream on a fundamental level. Biological diversity of all kinds is essential to the survival of an ecosystem—so why should neurological diversity, which is one aspect of biological diversity, be any different? The objective fact that neurological diversity exists emerged as a strong argument for the acceptance of autistics and other neurological minorities as distinct classes of people among many, who have something valuable of their own to contribute, and who are as inherently worthy of equal rights as anyone.

In 1998, Judy Singer from Australia, who identified as having "AS [Asperger's Syndrome] traits", turned these InLv discussions into an influential sociological thesis [8] and book chapter [9], citing plenty of group members with their permission, and adding the requisite academic language to lend it legitimacy. Thus, she is correctly credited with coining the term 'neurodiversity' [10]. However, it may be argued that the American journalist Harvey Blume, who was also an InLv member and whom Singer cites as a frequent discussion partner, first popularized the term [11].What is certain to me is that InLv, due to the ethos of acceptance, inclusivity, and rejection of social and political conformism that I imparted on it, was able to provide the environment in which the idea could emerge.

It is important to note that InLv's notion of neurodiversity was different from the "neurodiversity paradigm" that many contemporary activists subscribe to. These days it is often held that there is no such thing as a brain that is "less" or "broken" because "all neurologies are valid" [12]. By contrast, neurodiversity as an aspect of biodiversity includes and accepts people with suboptimal neurological configurations.While autistic people who would have preferred to be "cured" if possible were a minority in the InLv community, we never excluded or denounced them.

Meanwhile, the InLv community was joined by the #asperger IRC (Internet Relay Chat) channel for which I took over management in 1998. It had been started in 1997 by a German man nicknamed Nox, who had a diagnosis of schizoid personality disorder. He created the channel to be only for people on the autistic spectrum and related conditions. I disagreed with the exclusion of neurotypical guests and still do, but I did not feel like I could change this after the channel had become established as what it was. In any case it provided a way for autistic people, including many InLv members, to have text-based conversations that are much more direct than email.

Soon, the combination of these two communities started carrying over into the physical world. Many "real-world" relationships resulted, and I would estimate that at least a dozen children were born because of them, including my own three. Amazingly, the #asperger channel survives to this day, though people who join need to be patient as activity is intermittent.

Around the turn of the century, my own catatonia-like inertia problems started affecting my ability to manage the group effectively. As my initial burst of initiative petered out, it became harder and harder for me to manage email requests in a timely manner, and new members had to remind me multiple times and wait months before being added. Some

never received a response, and thinking of that fills me with guilt to this day. Thankfully, as easy-to-use mailing list and forum hosting services became available on the web, other autistic-run communities started popping up. In spite of all this, InLv continued until early 2013. Sixteen years is a good run for any online community.

Probably the most significant real-life outgrowth of InLv and related communities is the yearly Autscape residential conference (see Buckle, Chapter 8), founded after a 2004 InLv discussion on the idea of creating a European equivalent of Autreat. As one of the Autscape organization's directors, it makes me happy to see InLv's spirit of inclusion and acceptance continue there.

## **References**

*on neurological diversity* (Honours dissertation). University of Technology, Sydney. Republished in Singer (2017).

**Open Access** This chapter is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/ 4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license and indicate if changes were made.

The images or other third party material in this chapter are included in the chapter's Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the chapter's Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

## **4**

## **Autistic People Against Neuroleptic Abuse**

**Dinah Murray**

## **Origins**

In the mid-90s I had a job as a support worker for people with severe and multiple learning (intellectual) disabilities including autism, who had been discharged from National Health Service (NHS)-run long-stay hospitals into "the community." Our training for this job was thorough and humane in many ways, but little was said about the stacks of ring-bound blister packs of pills kept under lock and key. A community pharmacist explained to us how to administer the pills in the right order at the right time with proper regard to hygiene and record keeping. Nothing was more important, it seemed.

At first I took it for granted there were good reasons for all the pills: after all, these people had come out of hospitals. However, after a while I noticed that thioridazine was one of the "medications" and it rang a bell as one of the "old, dirty" antipsychotics aka "major tranquilizers"—wellknown to cause severe movement disorders *inter alia*. I started looking up

D. Murray (B) London, UK

the other drugs, then someone left this photocopied article in the office about the use of antipsychotic drugs with adults with learning disabilities and challenging behavior. These disabled people were being deliberately sedated with extremely harmful drugs.

One night the young manager, in tears, told me she'd just discovered that one of our most severely disabled people, who had gone into the old institution when he was 4 or 5 years old, had *ridden his tricycle into the long stay hospital where he had then lived* —*and been drugged with major tranquilizers*—*for 40 years*. We knew him as someone who needed help even to turn over. The period when our people had been hospitalized was a period of excited experimentation with new drugs and the doctors really had no idea what they were doing when they prescribed doses of chlorpromazine (an antipsychotic) to children which would later be regarded as around twelve times the recommended maximum. I was in tears too.

I became obsessed with the medication. It was increasingly clear that we were looking at routine, unquestioned, administration of substances that everybody in the know knew to be dangerous, to people that everybody in the know knew to be powerless: the rage drove work lasting into the twenty-first century.

As I got deeper into the general research I was doing, I became more and more horror-struck by the great range of problematic features of the whole psychotropic prescribing business, which were stripped bare in the power structures in which people with no information and no voice were ultimately vulnerable. I discovered that the drugs had a negative impact on hormones, insulin, dopamine, teeth, all drives including sex drive; I discovered these drugs kill people as well as twisting their limbs; I discovered that there was a long-term cumulative harmful impact and that the movement disorders many develop include a terrible restlessness, emotional and physical, as well as catatonia-like loss of function and uncontrollable tongue and limb movements; that polypharmacy—multiple prescribing was often to counter iatrogenic impacts of other drugs; that it had long been known that previously sane monkeys had gone bonkers after being dosed with a neuroleptic for several months which was suddenly withdrawn, causing not "relapses" but discontinuation syndrome, and gradual withdrawal was strongly recommended but rarely followed; that people were being medicated for distressing events and their signs of misery were seen as challenging instead of them being helped to deal with their understandable grief and upset; that urinary incontinence was a possible adverse effect (with huge social consequences) that was regarded as insignificant; that lactation was sometimes triggered, even in males; that weight gain to the point of obesity was shrugged off in the research but punished in the kitchens by stricter diets and locked cupboards. Worse still, all claims of "successful outcomes" were based on reductions in behavior of various sorts—given the usual sedating effects of the major tranquilizers, their ability to reduce behavior was unimpressive—the sedative effect wears off after 6–8 weeks, few studies at that time lasted longer than 6–8 weeks (see Fig. 4.1).

So I left my regular job and signed on as a relief worker, a casual worker status that meant I could never be asked to distribute medications. This also gave me more time for research and to develop a campaigning website. Thanks to pharmacologist Paul Shattock who told me about it—he was publicly concerned about the use of neuroleptics for behavior control long

**Fig. 4.1** The chart clearly showed that the vast majority of claimed "benefits" of medication in this sphere are about reducing behavior rather than enhancing personal well-being or capacity

before his public support for Andrew Wakefield's dubious research into the MMR vaccine—I went to an Autism Europe Conference in Brussels and heard about their Code of Good Practice on Prevention of Violence against Persons with Autism [1]. Paul also introduced me there to a concerned mother from the UK; meeting her at that conference was the first necessary step toward getting some activists working together in the tiny and unstructured group we called Autistic People Against Neuroleptic Abuse, or APANA for short.

The point of APANA was to be an effective vehicle to raise awareness of the harms being done to vulnerable people in the name of care, and to penetrate some entrenched positions in huge and deep-rooted power structures. For people with access (not the subjects of my case studies!), the Internet proved a rich source of information about both government and NGO thinking on these and related issues: there were consultations, and guidelines, and that was one way to get one's voice heard.

## **Getting to Work and Forming Alliances**

APANA recruited two autistic people: as Chairperson, David Andrews, who was in the process of acquiring several psychology-related qualifications; as Patron, Wendy Lawson (now known as Wenn Lawson), who was well along a similar path. The rest of the team were all parents of adult offspring they had seen damaged by psychiatrictreatment. I was spending more and more time reading research (for example, [2–6]). I discovered that an unexpected result of the hospital closures was that prescriptions of psychotropics had gone *up* as neighbors of the new noisy people in the community complained. When I looked into the old prescription records, I found that this was true for almost everyone in the houses where I most often worked. The institutions had eventually had a policy of reducing medication.

There was one discovery in the files that tipped my concern from a commitment to an out-and-out mission. A service user I'll call Patrick, who was on the highest neuroleptic dose I found in this group, had become borderline catatonic. From the files it was clear that he had once been fairly lively. Then I found a letter, addressed to senior management from the "community" learning disability psychiatrist. She complained in her letter that support workers had questioned her judgment that Patrick's medication should be increased by 30%. Since the rules that govern care providers explicitly require them to follow all medical advice or put their business at risk, this reproach was significant and probably got some caring and conscientious workers into a bit of trouble. Much worse though were the repercussions for Patrick: the psychiatrist had increased his dose by 50% after her authority had been questioned in this outrageous way; without prompting he was no longer able even to complete the action of putting a kettle on to boil. It is ironic that "health and safety" risk aversion in social care settings led to routine, authorized, high-risk behavior by both staff and management toward the people receiving their "care."

I discovered that distinguished psychiatrist Lorna Wing was interested in autism and catatonia, and had expressed concerns that neuroleptic prescribing was sometimes implicated in its onset. So I rang Lorna Wing's Centre, then known as the Centre for Social and Communication Disorders, in the hopes of speaking to her. She was not there that day but Judith Gould came to the phone to deal with this unknown support worker's anxious query. She listened to the problem, immediately said I should ring Lorna Wing herself and gave me her home phone number. So next I picked up the phone and dialed that. The great Wing answered the phone herself and was so interested and open that I trusted her at once and said very soon after our conversation began, that all I had found among her colleagues was "Arrogance, ignorance, and hypocrisy"—to which, taking my breath away, she replied with vigor, "I couldn't agree more!" One couldn't hope for a better ally in this particular battle [7].

#### **Communicating Our Message Across Many Platforms**

I decided to write up case studies of what I'd found in the files in a way that would make the research as effective as possible. I looked at quality of life issues and the impact on those of the ramified adverse effects of the prescribed drugs; I compiled detailed timelines for four service users, three of them autistic, and their life events [8].

Unfortunately, how to carry out quality of life assessments objectively remains a vexed question to this day [9], so instead I took and followed advice on assessing relevant costs, such as travel and staff time, in British pounds and went back through the records adding actual costs or rulegoverned estimates of costs to the timelines.

Our website, run by my friend Sue Craig, had much factual information, including all the illustrations to this chapter, and useful links and ancient advertisements for old drugs and new. Canadian artist Ralph Smith designed an elegant logo for us (Fig. 4.2). This served us well and got the message out that Autistic People Against Neuroleptic Abuse was an active force. Autistic activists in the USA such as A. M. Baggs (now

**Fig. 4.2** Summarized comparisons of restrictive or potentially fatal effects of psychotropic drugs prescribed for autistic adults with learning disabilities and challenging behavior (ca 2001). From left to right, starting with the antipsychotics: phenothiazines (e.g. Chlorpromazine), thioxanthines (e.g. Fluenthixol), Haloperidol, pimozide, risperidone, olanzapine; and then various non-neuroleptic experimental drugs for autism-related perceived problems, viz paroxetine, lithium, carbamazepine, buspirone, naltrexone, and the beta-blocker propranolol

known as Mel Baggs) and Kassiane Sibley (now Kassiane Asasumasu) were supportive and deepened my understanding of what it is like to be on the receiving end of interventions designed solely for the purpose of suppressing behavior which other people condemn.

Being able to brand the work as from "APANA" was I think particularly helpful in being taken seriously rather than assimilated into the *vox populi*. Mencap, the main British learning disabilities charity, agreed to circulate the research to their consortium of service providers in this field.

It also helped that I had some strategically placed friends and allies. David Branford, a senior learning disabilities pharmacist, was sympathetic, and encouraged me to attend a conference he was organizing in Leicester late last century. It was there I first encountered the "psychiatry is to real medicine as astrology is to astronomy" meme, inadvertently shared with me by a psychiatrist who misjudged my status until rather late in our conversation, assuming I was a fellow clinician.

Rita Jordan at Birmingham University gave me a platform for the medication issues on one of the Autism Distance Education Course weekends, thus reaching everyone doing the course at that time. Almost all of those were professionals in the field, some in senior positions, including people who worked with adults. Glenys Jones was in the process of setting up a new, practical, autism-relevant journal, *Good Autism Practice*, and she invited me to submit my research for the prototype issue, published in 1999. I also got a poster presentation at the Autism Europe Conference in Glasgow that year and Wen Lawson and/or I were there in person throughout ready to discuss it.

#### **Pressing Parliament and Leaning on the Law**

I undertook a careful analysis of a range of medications proposed at the time for "ameliorating autistic behavior," and I scored adverse effects according to their recognized frequency (using the free Medline database). Risperidone, newly popular with prescribers, was only slightly less harmful than chlorpromazine at the recommended (likefor-like) dose ranges for psychosis (see Fig. 4.3). Wenn Lawson and myself addressed a sub-committee of the All-Party Parliamentary Group

**Fig. 4.3** The APANA logo, designed by Ralph Smith

on Autism about prescribing, illustrated with Fig. 4.1. (One of the people who heard us was Virgina Bovell, a mother of an autistic person with learning disabilities, in whom we found a new ally despite her involvement with behaviorism—I later came to understand that parents may be presented with behavioral approaches as the only alternative to a medicalized attitude and recourse to drugs.)

I got views from as many as possible autistic people with relevant experience and discovered that some, but not all, were saying that at a very low dose, they found risperidone positively helpful; that it improved their mood and could make social encounters less stressful. If someone tells me that they find a drug helpful and their consumption is moderate, I'm going to see that as normal human practice. In the case of risperidone or other antipsychotics, I liken this to accepting that a glass of wine every day may do a lot of good, while a bottle will not. To me it is the absence of choice, the absence of relevant information, and the inability to refuse that need fixing. In the long run, it is worth noting that most of the people I knew who liked risperidone at a low dose eventually developed adverse effects that put them off—they were fortunate to have the capacity to articulate their problems and the autonomy to make this decision.

(Having now, two decades later, read through extensive messages posted in the last few years on mental health forums, it is clear that low dosing with risperidone has become commonplace, especially for anxiety. It is also clear that there is a major division in people's experiences of this drug, with some people greeting its effects with joy and others with real horror. To give something as powerful and unpredictable as this to people who are unable to tell you how they feel, still seems to me the height of irresponsibility. People need to understand the potential risks and freely choose to take them. Clearly that did not apply to the people in my case studies!)

Though our message was being heard in some quarters, the extreme power imbalance sometimes seemed overwhelming. So we decided to keep pushing positive proposals tied to precisely referenced and cited government papers, by addressing civil servants, administrators, and Members of Parliament about the law with some specific suggestions that I set out at length. These are to be found following the main text of my "Potions and Pills" piece [8] in the longer version online.

A related line I decided to follow was to get a proper legal view *pro bono* (for no fee because for the public good) if possible. Somehow I found a deeply committed solicitor, Karen Ashton, and barrister Paul Bowen of the Doughty Street Chambers in London, who were willing to look to assess the legal situation vis-à-vis medical treatment that flouts the Hippocratic Oath, Do No Harm—especially to people deemed to be "mentally incapacitated." They needed someone to gather the evidence together and I gave up my job entirely for three months, during which I created a compendium of abstracts substantiating a great variety of adverse effects and at the same time demonstrating that reduced behavior was the key index of "efficacy" in their use (see Fig. 4.1). This resulted in lawyers Bowen and Ashton producing a discussion paper (available in the online edition of this chapter), which suggested that medical treatment can amount to an assault unless great care is taken regarding consent or "best interests."They proposed that the Human Rights Court "may well be willing to exercise its power in relation to the prescribing of psychotropic drugs, particularly where serious side-effects are well-established." This was circulated widely.

In 2001, Ashcroft and colleagues [10] called for better research into antipsychotic prescribing for "challenging behaviours." They cited Brylewski and Duggan's [11] *Cochrane Review*, as showing "over 500 citations assessing the impact of antipsychotic drugs on challenging behaviour. Of these only three were methodologically sound randomised controlled trials, but even these were unable to show whether antipsychotic drugs were beneficial or not in controlling challenging behaviour" [10].

### **Impact**

Ashcroft and colleagues frame the issues thus: **"**People with learning disability sometimes display challenging behaviour. This can be managed by use of antipsychotic medication or behavioural therapy or both. There is no solid evidence, however, that these therapies are safe and effective." Unfortunately the possibility that behavioral therapy may not be safe was not pursued, nor was the possibility that a focus on behavior control cannot preserve mutuality, create trust, or be authentically "person-centered." This fixation with behavior, along with skillful marketing of "Positive Behaviour Support," has underpinned and undermined a medical campaign against the drugging launched in 2018 (see below).

Consent issues and the best interest concept were soon to be leading themes in the Mental Capacity Act (2007), (a development to which Paul Bowen contributed). That is a very strong piece of rights legislation in principle, though it has thrown up some paradoxes in practice (see, e.g., DoLS discussion at House of Lords 2015, or this Parliamentary video from 2018, https://www.parliamentlive.tv/Event/Index/d47bf41e-72b1- 48d8-afc5-b5727a40f05b). The MCA guidelines draw attention to the possibility that the psychotropic effects of some medications may hinder judgment, and there are widespread guidelines on administering medication to people whose best interests must in law be factored in. In 2006 the University of Birmingham published an attempt to address the consent issues by creating a simplified symbol-based system for describing the medications and their effects [12]. Perhaps our activities contributed to the wider recognition of such needs, but how much long-term impact did we have?

Maybe a bit for a while—however, see this from the Foreword of the Faculty of Learning Disabilities of the Royal College of Psychiatrists [13]:

There is compelling evidence that a significant number of people with intellectual disabilities are prescribed psychotropic medication that, at best, is not helping them. In particular, there is a risk that doctors are prescribing medication to treat behaviour that is an expression of distress or a mode of communication rather than a mental disorder. Some people with intellectual disabilities have difficulty communicating their emotional needs and preferences. Therefore, doctors have a particular responsibility to ensure that they have fully assessed a person's potential to benefit from medication before they prescribe. They must also check that the anticipated benefits have occurred after they have prescribed.

David Branford, whose earlier work [5] influenced mine, co-edited this careful and strongly worded document produced by a team dominated by learning disability specialists.

With two provisos, this specialist report's advice is generally clear and strongly argues its case for greater prescribing caution. One reservation is that the advice lumps in autistic people with all other learning disabilities and generalizes that usual dosing practices will be fine for addressing mental illness when it occurs. Much anecdotal evidence says that autistic people often have atypical reactions including super sensitivity to drugs. As Defilippis and Wagner [14] suggest, "Children and adolescents with autism spectrum disorder appear to be more susceptible to adverse effects with medications; therefore, initiation with low doses and titrating [adjusting the dosage] very slowly is recommended." Also, neither they nor the Care Quality Commission (a public regulator of health and social services in England) note the need for staff medication training. The latter says (2017) "We will not consider it to be unsafe if providers can demonstrate that they have taken all reasonable steps to ensure the health and safety of people using their services and to manage risks that may arise during care and treatment." Since "reasonable steps" will of course include following instructions from doctors, this regulation can only have a protective impact if the doctors are also changing their practices: perhaps the current alliance between the NHS and the behaviourists (the autism and learning disability campaign Stopping Over Medication of People, or STOMP) may have the power to change those.

Sadly, it seems there has been little or no real progress this century—yet the very existence of these reports shows that the zeitgeist may finally have penetrated Bedlam. We may have helped let it in.

## **References**

**Open Access** This chapter is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/ 4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license and indicate if changes were made.

The images or other third party material in this chapter are included in the chapter's Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the chapter's Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

## **5**

## **Autistics.Org and Finding Our Voices as an Activist Movement**

**Laura A. Tisoncik**

## **Deep Origins: Martin Luther King Jr. and the Fair Housing Campaign**

Many have said that the first explicitly political act that emerged from the autistic community was the website autistics.org.

That's not true. While the community, at the time of the founding of autistics.org in 1998, was oriented toward support groups, political activism was in the air. Some persons active at that time, notably Cal Montgomery, had roots in the broader disability rights, psychiatric survivors, and developmental disability movements, and were posting cogent political positions on Listservs, Usenet, and other now almost forgotten corners of the internet before autistics.org was even imagined. Nothing arises from a vacuum, and neither did autistics.org.

L. A. Tisoncik (B) Burlington, VT, USA

But if it is necessary to give credit to just one individual for the founding of autistics.org, I know who that person is.The true founder of autistics.org is Dr. Martin Luther King Jr. and he founded it in Chicago in 1966.

In 1966, Martin Luther King moved to Chicago, to lead a housing desegregation campaign. Dr. King was not then seen as the harmless and mostly fictional figure we venerate today. He was a radical agitator, hated and feared by most white people, and considered a criminal and likely communist by the government. The difference between MLK Jr. and more "radical" figures like Malcolm X and the Black Panthers was one of tactics, never of content, and no one during his lifespan doubted or watered down his militancy.

I was nine years old. The Chicago neighborhood I came from, Marquette Park, and the suburb we'd recently moved to, Evergreen Park, were targeted for desegregation marches that summer. People in the neighborhoods were terrified, and many of them prepared to "defend" the neighborhoods, with rocks, bricks, and baseball bats. When the Archdiocese of Chicago announced (in response to the campaign) that it would begin busing African American students to desegregate my school in the fall, violence and threats of violence against African Americans reached near wartime intensity. A house, a few blocks away, was burned to the ground amid rumors (probably false) that it had been sold to an African American family. And gangs of teens had begun patrolling the local mall with baseball bats, seeking out African Americans who dared to go shopping in a white neighborhood.

It was a time when virtually every family watched the 6 p.m. news together, and so I knew about the civil rights movement and the growing anti-war movement. I had not yet formed an opinion about current events, or even an opinion that I should have an opinion. All of it had seemed like stories of faraway events unrelated to my life, told on a 12- blackand-white cathode ray tube in the kitchen.

But during the tumult of that summer, a pattern was emerging. The same persons who were carrying out acts of violence against African Americans were also the worst of my bullies. The few brave families who dared to volunteer as host families for African American kids about to be bused to my school were also among the few who were kind to me, the weird crazy kid in the neighborhood. I did not yet understand much about these issues, but I knew which side my enemies were choosing. I knew, therefore, which side had to be my side.

I understand racism is not the same as bullying, any more than ableism is bullying. Most of the methods any -ism uses to maintain a power differential between the privileged and the oppressed are subtle, hard to name, and even harder to prove. Many of the methods are baked into the way things are done, so that they can't be uprooted without questioning fundamental assumptions about how the world should work. But in the end every -ism will resort to overt violence, if it must, to maintain itself. The pattern I saw as a kid came about largely because the worst people are inclined to poly-bigotry: they hate everyone not evidently of their own kind.

#### **My Activist Past**

Over the course of the next few years, activism became my perseveration and my social crutch. I was awkward and fearful to the point of panic in most social settings, but as an activist I could talk to anyone, speak to any crowd, and act fearlessly. I organized my high school's underground newspaper. I became involved with the Chicago area working-class youth movement *Rising Up Angry*. I read book after book of left-wing theory, identified as an anarcho-syndicalist,<sup>1</sup> and joined the radical syndicalist union, the Industrial Workers of the World. I protested against military recruiters at my high school, I distributed leafletsfor the defense committee for the imprisoned African-American anarchist activist, Martin Sostre. I picketed for the United Farm workers union, and I sat on the train tracks in Colorado to shut down the Rocky Flats nuclear weapons facility.  When I was engaged in activism, I was almost normal, or at least I was useful enough for the cause that my shortcomings could be overlooked.

<sup>1</sup>A left-wing anarchist who sees revolutionary industrial unionism as the means workers can use to overthrow capitalism.

I was less functional than frantic, less social than busy, and everything I did was as much crushing as it was a social crutch. Sometimes the stress won. Sometimes the weird screwed up everything.