Autistic Community and the Neurodiversity Movement

1. Front Matter

   Pages i-xix

   PDF

2. Introduction

   • Steven K. Kapp

   Pages 1-19Open Access

3. Gaining Community

   1. Front Matter

      Pages 21-21

      PDF

   2. Historicizing Jim Sinclair’s “Don’t Mourn for Us”: A Cultural and Intellectual History of Neurodiversity’s First Manifesto

      • Sarah Pripas-Kapit

      Pages 23-39Open Access

   3. From Exclusion to Acceptance: Independent Living on the Autistic Spectrum

      • Martijn Dekker

      Pages 41-49Open Access

   4. Autistic People Against Neuroleptic Abuse

      • Dinah Murray

      Pages 51-63Open Access

   5. Autistics.Org and Finding Our Voices as an Activist Movement

      • Laura A. Tisoncik

      Pages 65-76Open Access

   6. Losing

      • Mel Baggs

      Pages 77-86Open Access

4. Getting Heard

   1. Front Matter

      Pages 87-87

      PDF

   2. Neurodiversity.Com: A Decade of Advocacy

      • Kathleen Seidel

      Pages 89-107Open Access

   3. Autscape

      • Karen Leneh Buckle

      Pages 109-122Open Access

   4. The Autistic Genocide Clock

      • Meg Evans

      Pages 123-132Open Access

   5. Shifting the System: AASPIRE and the Loom of Science and Activism

      • Dora M. Raymaker

      Pages 133-145Open Access

   6. Out of Searching Comes New Vibrance

      • Sharon daVanport

      Pages 147-154Open Access

   7. Two Winding Parent Paths to Neurodiversity Advocacy

      • Carol Greenburg, Shannon Des Roches Rosa

      Pages 155-166Open Access

   8. Lobbying Autism’s Diagnostic Revision in the DSM-5

      • Steven K. Kapp, Ari Ne’eman

      Pages 167-194Open Access

   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

   10. Autonomy, the Critical Journal of Interdisciplinary Autism Studies

       • Larry Arnold

       Pages 211-220Open Access

   11. My Time with Autism Speaks

       • John Elder Robison

       Pages 221-232Open Access

   12. Covering the Politics of Neurodiversity: And Myself

       • Eric M. Garcia

       Pages 233-241Open Access

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.

• autism
• neuropsychological disorders
• atypical neurological development
• disability rights activism
• neurodiversity
• Neurocentricism
• Autism Network International
• Living on the Autistic Spectrum
• Autistic People Against Neuroleptic Abuse
• autistic people as a minority group
• neurodivergent
• Open Access
• disability studies

“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)

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

  Steven K. Kapp

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.