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Autistic Community and the Neurodiversity Movement

Stories from the Frontline

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  • Open Access
  • © 2020

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Overview

Editors:
  1. Steven K. Kapp

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

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  • The first book to bring together a large collection of neurodiverse contributors to talk about events that shaped the movement, and which they themselves were involved with

  • Focuses on activists’ direct experience effecting change for people who identify as autistic rather than abstract accounts that reflect on autism’s social construction or essence

  • Provides a one-stop shop 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

  • Gathers a collective of autistic activist/academic voices and engages in current theoretical debates around knowledge production and epistemic authority within (critical) research on autism

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Table of contents (22 chapters)

  1. Front Matter

    Pages i-xix
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  2. Introduction

    • Steven K. Kapp
    Pages 1-19Open Access
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  4. Getting Heard

    1. Front Matter

      Pages 87-87
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    2. Neurodiversity.Com: A Decade of Advocacy

      • Kathleen Seidel
      Pages 89-107Open Access
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    3. Autscape

      • Karen Leneh Buckle
      Pages 109-122Open Access
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    4. The Autistic Genocide Clock

      • Meg Evans
      Pages 123-132Open Access
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    5. Shifting the System: AASPIRE and the Loom of Science and Activism

      • Dora M. Raymaker
      Pages 133-145Open Access
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    6. Out of Searching Comes New Vibrance

      • Sharon daVanport
      Pages 147-154Open Access
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    7. Two Winding Parent Paths to Neurodiversity Advocacy

      • Carol Greenburg, Shannon Des Roches Rosa
      Pages 155-166Open Access
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    8. Lobbying Autism’s Diagnostic Revision in the DSM-5

      • Steven K. Kapp, Ari Ne’eman
      Pages 167-194Open Access
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    9. Torture in the Name of Treatment: The Mission to Stop the Shocks in the Age of Deinstitutionalization

      • Shain M. Neumeier, Lydia X. Z. Brown
      Pages 195-210Open Access
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    10. Autonomy, the Critical Journal of Interdisciplinary Autism Studies

      • Larry Arnold
      Pages 211-220Open Access
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    11. My Time with Autism Speaks

      • John Elder Robison
      Pages 221-232Open Access
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    12. Covering the Politics of Neurodiversity: And Myself

      • Eric M. Garcia
      Pages 233-241Open Access
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Keywords

About this book

This open access book marks the first historical overview of the autism rights branch of the neurodiversity movement, describing the activities and rationales of key leaders in their own words since it organized into a unique community in 1992. Sandwiched by editorial chapters that include critical analysis, the book contains 19 chapters by 21 authors about the forming of the autistic community and neurodiversity movement, progress in their influence on the broader autism community and field, and their possible threshold of the advocacy establishment. The actions covered are legendary in the autistic community, including manifestos such as “Don’t Mourn for Us”, mailing lists, websites or webpages, conferences, issue campaigns, academic project and journal, a book, and advisory roles. These actions 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.

Reviews

“This book is a landmark, foundational text chronicling the birth and evolution of a new civil rights movement in the thoughts and words of the folks who made it happen. It should immediately be taught in any courses that touch upon autism, neurodiversity, and the history of the disability rights movement, and is destined to be regarded as a classic description of oppressed and marginalized people fighting their way toward autonomy and self-determination.” (Steve Silberman, author of NeuroTribes: The Legacy of Autism and the Future of Neurodiversity)

“This volume will be essential reading for anyone seeking to understand the seismic shift in thinking about autism brought about by the neurodiversity movement. Embodying the disability rights motto, ‘nothing about us without us’, this collection of 19 chapters by autistic activists charts the formation, growth and influence of autistic self-advocacy and the neurodiversity movement. Steven Kapp has brilliantly edited and crafted a volume that challenges, informs and enlightens, while not shying away from controversies and debates.” (Professor Francesca Happé FBA FMedSci, Professor of Cognitive Neuroscience, King's College London, Past-President of International Society for Autism Research)

“Autistic advocates and the neurodiversity movement have radically changed understandings of autism across the world. In this outstanding collection, Steven Kapp brings together a collection of some of the most powerful campaigners to describe how they have achieved so much. Their accounts provide a vital reminder of the fundamental importance of their work and of the struggles that continue to this day. Everyone with an interest in autism and in justice should read it.” (Professor Liz Pellicano, Department of Educational Studies, Macquarie University, Australia)

Editors and Affiliations

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

    Steven K. Kapp

About the editor

Steven K. Kapp is a Research Fellow in Sociology at the University of Exeter, UK, working on the Wellcome Trust-funded project Exploring Diagnosis: Autism and Neurodiversity. With backgrounds in public policy, education, psychology, and disability studies, he researches the lived experiences, support needs, and quality of life of autistic people.

Bibliographic Information

  • Book Title: Autistic Community and the Neurodiversity Movement

  • Book Subtitle: Stories from the Frontline

  • Editors: Steven K. Kapp

  • DOI: https://doi.org/10.1007/978-981-13-8437-0

  • Publisher: Palgrave Macmillan Singapore

  • eBook Packages: Social Sciences, Social Sciences (R0)

  • Copyright Information: The Editor(s) (if applicable) and The Author(s) 2020

  • License: CC BY

  • Hardcover ISBN: 978-981-13-8436-3Published: 19 November 2019

  • Softcover ISBN: 978-981-13-8439-4Published: 11 September 2020

  • eBook ISBN: 978-981-13-8437-0Published: 07 November 2019

  • Edition Number: 1

  • Number of Pages: XIX, 330

  • Number of Illustrations: 1 b/w illustrations, 6 illustrations in colour

  • Topics: Disability Studies, Child and Adolescent Psychiatry, Social Work, Theory of Medicine/Bioethics

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