History of the "autism community," the autistic community, and the idea of autism

• History of the idea of autism
• History of the "autism community" (mostly NT professionals and parents of autistic children)
• History of the autistic adult community

Disclaimers: Sites listed on this page represent a variety of points of view, not necessarily endorsed by the author of this site. And, except in the section on the History of the autistic adult community, most of the sites listed on thie page are not authored by (openly, at least) autistic people.

History of the idea of autism

• The Early History of Autism in America by John Donvan and Caren Zucker, Smithsonian, January 2016. "A surprising new historical analysis suggests that a pioneering doctor was examining people with autism before the Civil War."

• How history forgot the woman who defined autism by Lina Zeldovich, Spectrum News, 7 November 2018. "Grunya Sukhareva characterized autism nearly two decades before Austrian doctors Leo Kanner and Hans Asperger. So why did the latter get all the credit?" (See also Tribute to Grunya Efimovna Sukhareva, the Woman who First Described Infantile Autism, by Annio Posar and Paola Visconti J Pediatr Neurosci. 2017 Jul-Sep; 12(3): 300-301.)

• Leo Kanner's original paper (PDF). For many years, Leo Kanner was mistakenly believed to have discovered the very idea of "autism." (See also the Wikipedia article about Donald Triplett, the first child whom Kanner diagnosed with autism.)

• Wikipedia article on Hans Asperger.

• The History of Autism by Virginia Sole-Smith, Parents, February 23, 2014. (Somewhat outdated; see articles above.)

• How autism became autism by Bonnie Evans, History of the Human Sciences, 2013 Jul; 26(3), with a primary focus on developments in the U.K.

• A History and Timeline of Autism by Vincent Iannelli, MD, verywell health, updated on November 30, 2020.

• DSM-5 Diagnostic Criteria for Autism Spectrum Disorder; compare with the obsolete DSM-IV-TR Diagnostic Criteria for Pervasive Developmental Disorders (another copy here.). But note that the ICD-10 codes for pervasive developmental disorders are still (as of 2023) consistent with the DSM IV, not the DSM 5.

• For some of the input that went into the transition from DSM IV to DSM 5, see: Joint ASAN and Autism Society Statement on DSM-5, January 31, 2012, and Lobbying Autism's Diagnostic Revision in the DSM-5 by Steven K. Kapp and Ari Ne'eman, in Autistic Community and the Neurodiversity Movement, November 2019.

• Autistic While Black: The Erasure of Blacks From Histories of Autism by Kerima, Intersected, Friday, January 22, 2016.

• A timeline of autism classifications, Embrace Autism, Last updated on September 4, 2022

History of the "autism community" (mostly NT professionals and parents of autistic children)

• The (North American) Autism Society's history page.

• The (U.K.-based) National Autistic Society's history of autism page.

• Brief history (via the WayBack machine) of the Asperger Syndrome & High Functioning Autism (AHA) Association, an organization that used to run in-person support groups here in New York City and on Long Island. In 2019, it merged with AANE.

• Autism History Project, University of Oregon: Brief introduction and Timeline

• The errors - and revelations - in two major new books about autism by Ari Ne'eman, Vox, Jan 21, 2016. Review of NeuroTribes by Steve Silberman and In a Different Key by Caren Zucker and John Donvan. See also The man who wants us to embrace autism by Jenny Turner, Guardian (U.K.), Sat 29 Aug 2015, about Steve Silberman.

History of the autistic adult community

• Autistic Archive timeline

• Autism Network International: The Development of a Community and its Culture by Jim Sinclair, January 2005, and Cultural Commentary: Being Autistic Together, by Jim Sinclair, Disability Studies Quarterly, Vol. 30 No. 1 (2010). See also Interview With Jim Sinclair (PDF) by Michael Ellerman, and Autreat 2000 (video).

• Don't Mourn for Us, an outline of the presentation Jim Sinclair gave at the 1993 International Conference on Autism in Toronto. See also Historicizing Jim Sinclair's "Don't Mourn for Us": A Cultural and Intellectual History of Neurodiversity's First Manifesto by Sarah Pripas-Kapit, Autistic Community and the Neurodiversity Movement: Stories from the Frontline, edited by Steven K. Kapp, 08 November 2019.

• About neurodiversity:

  • Neurodiversity: Some Basic Terms and Definitions by Nick Walker, 2014.
  • Meet Judy Singer a NeuroDiversity Pioneer: An Interview with the Australian Sociologist who coined the term 'Neurodiversity', Spectrum Suite.
  • In conversation with Judy Singer..., Autism Awareness Australia, 10 Mar 2020.
  • What is Neurodiversity? by Judy Singer on her blog.

  But see also: Was neurodiversity really Judy Singer's original idea? A little history lesson by Martijn "McDutchie" Dekker, 29th June 2023. Also see Setting the Record Straight on Neurodiversity, Autism Against Fascism Tumblr blog, Saturday, 8 July 2023.

• neurodiversity.net - an archive of the site formarly known as neurodiversity.com. For a history of the site, see Neurodiversity.Com: A Decade of Advocacy by Kathleen Seidel, in Autistic Community and the Neurodiversity Movement, pp 89-107.

• The "Ransom Notes" Affair: When the Neurodiversity Movement Came of Age by Joseph F. Kras, Disability Studies Quarterly, Vol 30, No 1 (2010). (See also Victory! The End of the Ransom Notes Campaign by the Autistic Self Advocacy Network, December 19, 2007.) Note: This success was due mainly to the support of the larger disability rights movement.

• Autistic Self Advocacy Network's history page.

• History of GRASP (Global and Regional Autism Spectrum Parthership, formerly the Global and Regional Asperger Syndrome Partnership).

• Welcome to AFSS: Building a more inclusive community, one person at a time by Stephen Katz, Executive Director, Aspies for Social Success (AFSS), February 19, 2016

• Autistic people have been excluded from advocacy conversations. Julia Bascom is changing that by Sara Luterman, 19th*, April 29, 2022. (quoted in the Wrong Planet thread Autistic Journalist profiles ASAN executive director)

• 3 Ways Disability Culture Has Been Changing by Andrew Pulrang, Forbes, Sep 23, 2021.