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 disease that must be "treated" or "cured".

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.

The autism rights movement is a subset of the neurodiversity movement and disability rights movement. Unfortunately for the movement however, the popularity of said initiative is mainly limited to Western Europe and North America. In other regions, the ARM issue is not being discussed. If they seek to spread the ideas of their movement, ARM activists would need to actively promote the concept of Autism rights around the world.

Neurodiversity[edit]

The neurodiversity movement is a grassroots political movement that initially arose in the late 1990s. Its proponents challenge what they take to be the default pathologization and undue medicalization of "natural human variants" by institutional psychiatry as well as society more broadly.
—The Bloomsbury Companion to Philosophy of Psychiatry[6]
The neurodiversity symbol

The autism rights movement promotes the concept of "neurodiversity", a diversity of neural patterns, and opposes the more common belief (both within and outside the medical community) that there is a "normal" mental standard and that aberrations from this standard (including autism, dyslexia, ADHD, and others) are illnesses which must be cured, prevented or minimized. 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.[citation needed]

The neurodiversity movement has grown beyond autism rights and been embraced by people with other conditions, including developmental speech disorders, dyslexia, dysgraphia, dyspraxia, dyscalculia, dysnomia, intellectual disability and Tourette syndrome, as well as schizophrenia, bipolar disorder, and some mental health conditions such as schizoaffective disorder, antisocial personality disorder,[7][8] dissociative disorders, and obsessive–compulsive disorder.[9][10] seeking acceptance of these conditions as different rather than dysfunctional ways of being.[11]

One might think that being apart of a movement where some advocates unironically think severe conditions like psychopathy and schizophrenia should be seen as "just a harmless difference" which is a part of the natural human genome of human diversity and therefore should be accepted rather than treated might account at least as associating with those who participate in a form of blatant Mental illness denial and may give future precedence for future activists of to promote the "acceptance" of other mental conditions that are objectively awful for both individuals affected by the condition and those associated with said individuals for the sake of promoting "natural human psychological diversity". However, it should be noted that due to the fact the movement has no official "leader" or goal other than the broad social acceptance of certain mental conditions that are considered to be "disorders", the views of one neurodiversity advocate might be completely different from another.

With regards to autism, neurodiversity proponents[Who?] 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.[citation needed]

Attitudes to classification, treatment and research[edit]

Seeing autism as a disability[edit]

While the view on the condition by Autism rights advocates varies greatly, people identified as apart of the movement generally oppose classifying autism as a disorder or an impairment, point out that it isn't an illness, and instead advocate for calling it a disability under the social model and/or a difference.[12] According to this, autistic people can be seen as not "sick", just different, and in need of extra support and acceptance.

If disability is caused by an inaccessible world, then how do we fix it? By making the world more accessible.

Society wasn't given, fully designed and implemented, to the world from the hand of God. We created it. Disabilities were created when society designed itself to include the majority of people while ignoring the needs of the minority. What is and isn’t a disability could be different in a different society.

And that means we can change society to be more inclusive.
—Luna Rose[13]

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.[14][15] 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, according to this model, 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.[16][17] This however has not been universally accepted in disability circles and has garnered some controversy over the years by the person who made it. One common criticism of the social model is that it underplays the role of impairments and how it actually affects those who are afflicted.[18]

Concerns over quack and cruel treatments[edit]

Members of the autism rights movement oppose some autism treatments, such as therapies that they argue force total compliance, as well as quack therapies, violent/painful therapies, and therapies that teach an autistic person to suppress unusual but harmless behaviors.

Many advocates for autistic people have raised concerns over Applied behavior analysis, abbreviated as ABA.[19][20] There are questions of whether it is humane to train autistic children to suppress their feelings in order to have "good behavior,"[21][22] and concerns over instances of physical and emotional abuse.[23] A self-report online survey suggested a correlation between self-reported ABA therapy and post-traumatic stress symptoms,[24] though the study was heavily criticised by behavioural analysts due to severe methodological flaws.[25] They also protest the Judge Rotenberg Educational Center, which uses ABA principles to torture students with electric shocks.

Advocates are concerned about the many, many quacks who are all too willing to subject autistic persons (especially children) to rather tortuous regimes.[26][note 1] Advocates for autistic people argue against the use of quack medicine like Miracle Mineral Supplement, Chelation therapy, Lupron therapy, and other useless and painful treatments.

However, this does not mean that all apart of the autism rights movement opposes all forms of treatment. Some advocates among the movement have expressed support therapies that they see as empowering autistic people to gain new skills and feel more comfortable. And they see that the therapy helps the autistic person lead a better life rather to making their behavior more "convenient" for other people, then any reasonable person will support it.[citation needed]

Fears about a cure[edit]

Can we all be honest, and acknowledge that when they say "fetal genetic testing," we all know what the likely outcome will be the second a nervous parent is given the results of a genetic test that says "your child has an increased risk of developing autism"?
—Deanna Fisher, mother of two autistic children[27]

The notion of treating autism or a "cure" is relatively controversial and divisive in the autism community with many being highly opinionated on both sides, (as some with the condition have openly supported being "treated" or even go as far as to be cured), while in many advocacy circles the idea is strongly disliked in many ARM and Neurodiversity groups. Although serious questions can be brought up on the efficacy of treatment or a "cure", or the morality on if, how and/or when such treatments should be used (if at all as argued by some ARM and ND activists), and if such treatments were to become widely accepted, could potentially lead to societal normalization for doctors to promote or force ALL people with the condition to be "treated", to "remove the autism from the individual" as to "save them", whether or not an affected person would ever wish for such a life changing treatment. Looking to what evidence there is on what a potential treatment would look like, current scientific research shows that at least in theory, use of Crispr therapy can be used to remove certain traits of autism in animals. Although much research is still needed to see how this would work on humans, it at least shows that in theory "treating" or reversing certain aspects of autism in the human brain is possible despite previous concerns by neurodiversity activists who doubted the possibility of such.[28][29] However, at least for the near term, a "cure" would most likely mean preventing autistic children from being born, similarly to how fetuses with Down syndrome are often aborted.[30][31]

Awareness and Acceptance Months[edit]

An autistic artist's depiction of awareness versus acceptance
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[32]

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 often carries a more negative tone, considering autism to be a growing 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.[33]

Many awareness campaigns include very negative messages, such as claims that autism causes divorce and heartbreak.[34][35] One survey of autistic adults suggests that negative messages from autism awareness events harm many autistic people's self image and mental health.[36] It's so bad that autistic people are passing around detailed coping advice for the month of April.[37]

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[38]

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.[39]

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 technically incorrect, because not all non-autistic people are neurotypical. For example, a non-autistic person with dyslexia or schizophrenia would not be considered neurotypical. The opposite of neurotypical is "neurodivergent."[40]

"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".[41] 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:[41]

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 ironic 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".[42]

Some autistic people dislike the term "allistic," because it enforces the idea that autistic people are self-centered while non-autistic people are not.[43] 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]

People opposed to the autism rights movement include:[44]

Some of these people and groups have a very large financial interest in ensuring that people continue to view autism as a horrible disease in urgent need of elimination. After all, if people start thinking that autism isn't the end of the world, then they might stop throwing money at pseudoscientific cures, allowing their children to be subjected to rigid punishment-and-reward regimes, or overlooking the horrible things some organizations say about or do to autistic people.

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.[47] Lenny Schafer argues that if every use of autism were changed to read Asperger syndrome, then the movement might make sense,[47] 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 often referring to autism as a disability.[48]

However, many people with Asperger syndrome 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.[49][50][51][52][53][54] 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.[55] This is why the latest edition of the DSM classifies severity by "support needs" rather than functioning labels.[56]

Anti-vaccination and crank groups such as Age of Autism despise neurodiversity in general.

Notes[edit]

  1. I mean, why put up with your kid's peculiar behaviour compared to every other upper-middle classman's when you can just bleach them to fucking death?
  2. This is a mostly French debate. In the early-to-mid 2010's, French autism rights activists teamed up with many of the aforementioned groups (or counterparts thereof) against psychoanalysts, because those were seen as a greater threat, due to the sheer level of bullshit they continue to promote within the French health and educational systems. Since psychoanalysis is slowly declining even in France, in part because of this political pressure (and since French autistics that are well-functioning enough tend now to have more pressing concerns than psychoanalysis), this alliance proved somewhat short-lived, and French autism rights advocates are no more afraid to take jabs at Vaincre l'Autisme (the French counterpart to Autism Speaks, with arguably even worse rhetoric). Another factor is that most of their allies back then leant towards the right, something that made many French autistics uncomfortable, due to the long history of intolerance that is part of the French right, in matters related to immigration or LGBTQ rights, for example. Another example of this evolution is how they perceive people like Michel Onfray (an atheist philosopher that was once considered as a socialist/hedonist left-libertarian, but would be probably best described as contrarian/populist nowadays): he was once lauded in 2010 for his book against Freud, now he's despised for his comments about Greta Thunberg (among other things). Some psychoanalysts have since opportunistically tried to claim to share common goals with the neurodiversity movement, though most psychoanalysts, for ideological reasons, are still unable to accept that autism has a mostly biological basis (a necessity when you have to treat autism as a disability), as they reject the modern scientific consensus, often still advocating pseudo-therapies instead. For historical reasons, psychoanalysis has been associated with the French left, despite the personal reactionary leanings of many prominent French psychoanalysts. Historically, the French left has also been very reluctant to attribute any mental condition to biology (as far as it could), though thankfully this line of thought is slowly dying out, with newer generations having a less dogmatic mindset.

References[edit]

  1. Autism Network International
  2. Autism Self Advocacy Network
  3. Aspies for Freedom
  4. Autism Research Institute
  5. Autism Speaks
  6. Serife Tekin, Robyn Bluhm, ed., The Bloomsbury Companion to Philosophy of Psychiatry. Bloomsbury Academic, 2019. ISBN 9781350024083.
  7. https://www.academia.edu/2034622 - The Virtue of Sociopaths: how to appreciate the neurodiversity of sociopathy (without becoming a victim)
  8. - Ethics and Neurodiversity
  9. http://journalofethics.ama-assn.org/2015/04/msoc1-1504.html - The Myth of the Normal Brain: Embracing Neurodiversity
  10. Bipolar - A Neurodiversity Approach
  11. Kathyrn Boundy, "'Are You Sure, Sweetheart, That You Want to Be Well?': An Exploration Of The Neurodiversity Movement, Radical Psychology, Volume 7, 2008.
  12. Judy Endow: Is Autism a Disability or a Difference? (Spoiler alert: it's both)
  13. Autistic Dreams: Yes, Autism is a Disability!
  14. The social model of disability
  15. The Social Model vs The Medical Model of Disability
  16. Definition: Social Model of Disability
  17. Understanding Disability Models
  18. https://www.tandfonline.com/doi/abs/10.1080/09687599.2013.818773
  19. The Shocking Controversy of ABA Therapy
  20. How to Tell if an Autism Therapy is Harmful on wikiHow, which rounds up perspectives on dangers of compliance therapy
  21. Invisible Abuse: ABA and the things only autistic people can see
  22. Is ABA Really “Dog Training for Children”? A Professional Dog Trainer Weighs In.
  23. Hidden camera reveals ABA therapist interacting 'roughly' with autistic 4-year-old boy
  24. Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis
  25. Evaluating Kupferstein’s claims of the relationship of behavioral intervention to PTSS for individuals with autism
  26. WikiHow: How to Avoid Autism Scams
  27. Parents of autistic children: Prenatal autism test will lead to more abortion
  28. Scientists are thinking the unthinkable: CRISPR might one day reverse devastating brain diseases
  29. https://www.spectrumnews.org/news/crispr-therapy-may-reverse-autism-mutations-effects-well-past-infancy/ - CRISPR therapy may reverse autism mutation’s effects well past infancy.
  30. A Reporter's Guide to the Autism Speaks Debacle
  31. Autism Controversies
  32. Autistic people are not tragedies. My life has value and joy
  33. Autism Speaks: World Autism Awareness Day
  34. The Autism Narrative
  35. Why Autism Speaks Hurts Us
  36. Autistics, Autism Awareness Campaigns, and the Mental Health Care System, transcript of presentation available online
  37. How to Cope with Autism Awareness Month - wikiHow
  38. What is Autism Acceptance Month?
  39. See Autism Acceptance Day blog and Autism Acceptance Month website.
  40. Neurodiversity: Some Basic Terms & Definitions
  41. 41.0 41.1 "Allism: an introduction to a little-known condition", Andrew Main, 2003
  42. Allism Speaks (Tumblr)
  43. "Allistic" discussion on Tumblr
  44. https://theaspergian.com/2019/09/10/behind-the-anti-neurodiversity-articles-an-unholy-alliance-of-usual-suspects/ Behind the Anti-Neurodiversity Articles: An Unholy Alliance of Usual Suspects] - The Aspergian
  45. "The Autism Rights Movement". 
  46. Researchers call for the term 'high functioning autism' to be consigned to history - Medical Xpress
  47. 47.0 47.1 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. Retrieved 2007-11-07. 
  48. The errors — and revelations — in two major new books about autism
  49. "What Is Wrong With Functioning Labels?". Retrieved 13 March 2016. 
  50. "You don't speak for Low-functioning autistics". Retrieved 03 April 2016. 
  51. Barnum, Courtney. "Why I Hate Functioning Labels". Retrieved 13 March 2016. 
  52. "Functioning Labels (Again!)". Retrieved 03 April 2016. 
  53. "Low-Functioning/Severe Autism". Retrieved 03 April 2016. 
  54. "No You Don't". Retrieved 03 April 2016. 
  55. New Study Agrees Harmful Autism 'Functioning' Labels Are Harmful
  56. "Changes to autism and Asper syndrome diagnostic criteria".