Autistic Community and the Neurodiversity Movement Stories from the Frontline Edited by Steven K. Kapp 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. 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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 legend- ary 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 neu- rodiversity 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 experi- ence of autistic people as a source of knowledge about their own plight. v vi Foreword Te volume acknowledges that individual contributions are shaped by contributors’ political and social experience as well as their lived under- standing of autism. Standpoint theory suggests inequalities foster particu- lar 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 prac- tices of the dominant group, hopefully leading to social change. Tis col- lection 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 inter- ested in the history and ideas of the neurodiversity movement and how these ideas have shaped production of expert and especially lay knowl- edge about autism. However, the neurodiversity movement has been problematized by both parents and academics for being unrepresenta- tive and divisive, and the book also addresses some of these critiques. Te target academic audience is primarily undergraduates and schol- ars 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 them- selves. 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 criti- cal 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 his- tory of autism inclusive of the neurodiversity movement as narrated by a journalist or researcher [10, 12] or featured anthologies of contribu- tors from autistic people published within the movement [1, 3, 9], this edited collection provides the frst history of the movement from frst- hand 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 com- munity and neurodiversity movement, progress in their infuence on the broader autism community and feld, and their possible threshold of the vii viii Preface advocacy establishment. Tis is followed by a description of some cri- tiques 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 neurodiver- sity movement (NDM). Te project aimed to assess what the under- standings 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 inclu- sion of autistic and other neurodivergent people. Responses described neurodivergent people as socially oppressed and stigmatized, yet pos- sessing valuable diferences that should not be cured but instead sup- ported 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 corrobo- rated 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