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Autism rights movement

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The autism rights movement is a civil rights movement arguing for greater acceptance of autism as a different but natural way of being, instead of it being viewed as a tragic disease.

Organizations active in the autism rights movement include Autism Network International,[1] the Autistic Self Advocacy Network,[2] and Aspies For Freedom.[3] Autism rights is part of the larger autism advocacy movement, which promotes greater awareness and understanding of autism, but autism rights groups strongly disagree with other autism advocacy and research groups such as the Autism Research Institute[4] and Autism Speaks[5] on issues of prevention and treatment.

Neurodiversity[edit]

The autism rights movement promotes the concept of "neurodiversity", a diversity of neural patterns, and opposes the more common understanding (both within and outside the medical community) that there is a "normal" mental standard and that aberrations from this standard (including autism, Asperger's syndrome, and sometimes also non-autistic neurological conditions) are disorders which must be treated or prevented. Autism rights and neurodiversity advocates see the traditional conception of normal and abnormal conditions as an example of privilege and discrimination, and draw parallels with other movements for greater acceptance of diversity, such as the LGBT rights movement.

The neurodiversity movement has grown beyond autism rights and been embraced by people with other conditions, including ADHD, dyslexia, Tourette's syndrome and bipolar disorder,[6] seeking acceptance of these conditions as normal rather than dysfunctional ways of being.[7]

Neurodiversity proponents acknowledge that many autistic individuals need a lot of support, that autistic people may struggle with everyday tasks, and that autism is a disability. However, they argue that this support should treat autistic people's experiences and self-expression with respect, rejecting interventions that train autistic people to "pass as neurotypical" by suppressing traits that are not actually harmful to themselves or others.

Attitudes to classification, treatment and research[edit]

Autism rights advocates oppose classifying autism as a disease, and instead advocate for calling it a disability. They are deeply concerned about research into causes of autism, fearing that this will lead to prenatal testing and the selective abortion of autistic fetuses, similarly to how fetuses with Down Syndrome are often aborted.[8][9] They feel that money would be better spent on ways to help autistic people who have already been born.

Many autism rights advocates see autism through the social model of disability. This idea holds that disability is a social construct, caused by society's failure to accommodate different abilities.[10][11] For example, a nearsighted person has a vision deficit, but the invention of glasses and contacts allows them to participate fully in everyday activities; a blind person may not be able to do ordinary things like reading restaurant menus or reading certain books because Braille and audiobook equivalents aren't always available. Thus, the disability is caused not by deficiency in a person, but by society's failure to offer options to work around it. Applying the social model of disability to autism would mean viewing autistic people as having unique needs instead of tragic deficits, and focusing on inclusion and accommodation instead of extinction.[12][13]

Members of the autism rights movement oppose some autism treatments, such as therapies that force total compliance, quack therapies, violent/painful therapies, and therapies that teach an autistic person to suppress unusual but harmless behaviors.[14][15] There are a fair bit of quacks out there that are all too willing to subject autistic persons (especially children) to rather tortuous regimes.[16] They advocate for therapies that focus on helping autistic people lead better lives (instead of making autistic people's behavior more "convenient" to others), and respect the dignity and autonomy of autistic people.

When autism researcher Dr Joseph Buxbaum predicted in 2005 that there could be a prenatal test for autism within the next ten years, an autism rights advocate responded by publishing an "Autistic Genocide Clock" on their website, which counted down the "estimated time remaining before prenatal testing and routine abortion".[17] This clock became a popular talking point within the autistic rights community, but has now been removed since the prenatal testing Dr Buxbaum predicted has not yet been achieved.

Awareness and Acceptance Months[edit]

The existence of autistic people like me is not a “tragedy”. Yet many autism awareness narratives insist it is because they prioritize the feelings of neurotypicals (non-autistic people) and dismisses the rest of us as little more than zombies. And when people buy into this idea, it actively hurts autistic people.... We want people to understand that everyone on the spectrum, verbal or otherwise, has value.
—Sarah Kurchak[18]

Another example of the schism between the autism rights movement and other autism advocacy groups is the campaign and counter-campaign to mark April as a day of autism awareness and acceptance.

World Autism Awareness Day, on 2 April, has been observed since 1990 when it was established by a United Nations resolution. World Autism Awareness Day promotes greater education and understanding of autism, but also greater concern about it as a growing world public health crisis. It is supported by groups such as Autism Speaks, who now promote it with the phrase "Light It Up Blue" and have designated April as Autism Awareness Month in the United States.[19] Many awareness campaigns include very negative messages, such as claims that autism causes divorce and heartbreak.[20][21] One survey of autistic adults suggests that negative messages from autism awareness events harm many autistic people's self image and mental health.[22]

In response to autism awareness, some autistic people and their loved ones have started observing autism acceptance instead.

In a nutshell, Autism Acceptance Month is about treating autistic people with respect, listening to what we have to say about ourselves, and making us welcome in the world.
—Autism Acceptance Month website[23]

Autism rights groups such as the Autistic Self Advocacy Network oppose World Autism Awareness Day's focus on autism prevention and cure, and also perceive its messages about autism as patronizing and demeaning to autistic people. Instead they campaign to "take back April" as Autism Acceptance Month, a time to spread hope and acceptance for autistic people and their loved ones.[24]

Neurotypicality and allism[edit]

"Neurotypical" (NT) means people who are "neurologically typical," or lacking any mental disabilities or diagnoses (such as intellectual/developmental disabilities and mental health disorders). While some people use it as the opposite of "autistic," this is incorrect, because not all non-autistic people are neurotypical. For example, a non-autistic person with dyslexia or depression would not be considered neurotypical. The opposite of neurotypical is "neurodivergent."[25]

"Allistic" is a word sometimes used to describe non-autistic people. "Allism" is a term coined in 2003 by Andrew Main, an autistic individual who wrote a parody medical paper identifying allism as "a congenital neurological disorder adversely affecting many areas of brain function".[26] By reversing the accepted views and presenting autism as the norm and allism (i.e. neurotypicality) as the disorder, he challenged the way society views autistic people. Regarding the etymology, he explained:[26]

The word "allism", invented for this article, is intended to precisely complement "autism". It is based on the Greek word "allos", meaning "other", just as "autos" (in "autism") means "self".

The term "allism" has become popular within the autism rights movement, and also caught on elsewhere in the world of identity politics and social justice advocacy, as a nonjudgmental way of defining people's neurological condition. The ironical attitude to the issue which Main promoted is still perpetuated in websites such as Allism Speaks (a parody of Autism Speaks), a blog which sarcastically mocks and patronises allistic people and their "struggles with allism".[27]

Some autistic people dislike the term "allistic," because it enforces the idea that autistic people are self-centered while non-autistic people are not.[28] Some people propose using the simple term "non-autistic" as a replacement, since it lacks this connotation, and is also easy to understand.

Opposition[edit]

Critics of the movement argue that anyone on the autism spectrum who is able to express their desire not to be cured must have Asperger syndrome.[29] Lenny Schafer argues that if every use of autism were changed to read Asperger syndrome, then the movement might make sense,[29] but this ignores the fact that the autism rights movement includes people who are diagnosed with "classic autism" rather than Aspergers, and some of them are unable to speak, walk, date, or do other everyday tasks in life.

Some critics claim that the autism rights movement says that autism is not a disability, despite proponents of the autism rights movement constantly referring to autism as a disability.[30]

Sue Rubin, the subject of the Oscar-nominated documentary Autism Is A World, is an example of an autistic adult who is aligned with the cure group. In her opinion, people with Asperger syndrome can communicate well and "pass for normal", while "low-functioning" people have a severe disability; "low functioning people are just trying to get through the day without hurting, tapping, flailing, biting, screaming, etc. The thought of a gold pot of a potion with a cure really would be wonderful."[31]

However, many people with Asperger's Disorder are severely disabled by their condition and not capable of "passing" due to their obvious autistic traits. Furthermore, the autism rights movement includes people who are described as "low-functioning". The movement generally rejects the "functioning labels" due to their highly inconsistent definitions and inability to usefully communicate the degree of a person's disability.[32][33][34][35][36][37] In a clinical sense, "high-functioning" technically refers to any autistic person with an IQ over 70; falling into this category does not mean that a person is able to "function" in their everyday life. This is why the latest edition of the DSM classifies severity by "support needs" rather than functioning labels.[38]

Jonathan Mitchell, an autistic author and blogger who advocates for a cure for autism, has described autism as having "prevented me from making a living or ever having a girlfriend. It's given me bad fine motor coordination problems where I can hardly write. I have an impaired ability to relate to people. I can't concentrate or get things done."[39] He describes neurodiversity as a "tempting escape valve".[40]

Anti-vaccination and crank groups such as Age of Autism despise neurodiversity in general. On the extreme end, people like John Best believe that neurodiversity proponents are teaming up with Congress to poison citizens with brain-damaging vaccines, and Oliver Canby says that neurodiversity proponents should be executed without due process.[41]

References[edit]

  1. Autism Network International
  2. Autism Self Advocacy Network
  3. Aspies for Freedom
  4. Autism Research Institute
  5. Autism Speaks
  6. Bipolar - A Neurodiversity Approach
  7. Kathyrn Boundy, "'Are You Sure, Sweetheart, That You Want to Be Well?': An Exploration Of The Neurodiversity Movement, Radical Psychology, Volume 7, 2008.
  8. A Reporter's Guide to the Autism Speaks Debacle
  9. Autism Controversies
  10. The social model of disability
  11. The Social Model vs The Medical Model of Disability
  12. Definition: Social Model of Disability
  13. Understanding Disability Models
  14. The Shocking Controversy of ABA Therapy
  15. How to Tell if an Autism Therapy is Harmful on wikiHow, which rounds up perspectives on dangers of compliance therapy
  16. I mean, why put up with your kid's peculiar behaviour compared to every other upper-middle classman's when you can just bleach him to fucking death?
  17. The Autistic Genocide Clock, Ventura33, now archived (via Wayback Machine).
  18. Autistic people are not tragedies. My life has value and joy
  19. Autism Speaks: World Autism Awareness Day
  20. The Autism Narrative
  21. Why Autism Speaks Hurts Us
  22. Autistics, Autism Awareness Campaigns, and the Mental Health Care System, transcript of presentation available online
  23. What is Autism Acceptance Month?
  24. See Autism Acceptance Day blog and Autism Acceptance Month website.
  25. Neurodiversity: Some Basic Terms & Definitions
  26. 26.0 26.1 "Allism: an introduction to a little-known condition", Andrew Main, 2003
  27. Allism Speaks (Tumblr)
  28. "Allistic" discussion on Tumblr
  29. 29.0 29.1 Harmon, Amy (2004-12-20). "How About Not 'Curing' Us, Some Autistics Are Pleading". The New York Times. Archived from the original on 16 November 2007. http://www.nytimes.com/2004/12/20/health/20autism.html. Retrieved 2007-11-07. 
  30. The errors — and revelations — in two major new books about autism
  31. Rubin, Sue. Acceptance versus Cure. CNN Programs - Presents. Retrieved on 2008-02-17.
  32. "What Is Wrong With Functioning Labels?". https://autloveaccept.wordpress.com/pacla-resources/what-is-wrong-with-functioning-labels/. Retrieved 13 March 2016. 
  33. "You don't speak for Low-functioning autistics". http://lysikan.tumblr.com/post/106147681470/you-dont-speak-for-low-functioning-autistics. Retrieved 03 April 2016. 
  34. Barnum, Courtney. "Why I Hate Functioning Labels". http://themighty.com/2014/10/why-i-hate-functioning-labels/. Retrieved 13 March 2016. 
  35. "Functioning Labels (Again!)". http://yesthattoo.blogspot.co.uk/2013/03/functioning-labels-again.html. Retrieved 03 April 2016. 
  36. "Low-Functioning/Severe Autism". http://lysikan.tumblr.com/post/123886781020/low-functioningsevere-autism. Retrieved 03 April 2016. 
  37. "No You Don't". https://unstrangemind.wordpress.com/2013/01/27/no-you-dont/. Retrieved 03 April 2016. 
  38. "Changes to autism and Asper syndrome diagnostic criteria". 
  39. Hamilton, Jon. "Shortage of Brain Tissue Hinders Autism Research". http://www.npr.org/blogs/health/2013/02/04/170835708/shortage-of-brain-tissue-sets-autism-research-back. Retrieved 10 May 2015. 
  40. Solomon, Andrew. "The Autism Rights Movement". http://nymag.com/news/features/47225/index4.html. Retrieved 10 May 2015. 
  41. Neurodiversity Amendment, a proposed amendment to the American Constitution to kill people who believe in neurodiversity, because that's definitely not evil.