Autism rights movement

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The autism rights movement (ARM), also known as the autistic culture movement, is a social movement within the greater neurodiversity movement that encourages autistic people, their caregivers and society to adopt a position of neurodiversity, accepting autism as a variation in functioning rather than a mental disorder to be cured.[1] The ARM advocates a variety of goals including a greater acceptance of autistic behaviors;[2] treatment that teaches autistic individuals coping skills rather than treatment focused on imitating behaviors of neurotypical peers, including extinguishing harmless stimming, forcing eye contact and breaking routines;[3] the creation of social networks and events that allow autistic people to socialize on their own terms;[4] and the recognition of the Autistic community as a minority group.[5]

Autism rights or neurodiversity advocates believe that the autism spectrum is genetic and should be accepted as a natural expression of the human genome. This perspective is distinct from two wings of the autism cure movement: (1) the perspective that autism is caused by a genetic defect and should be addressed by targeting the autism gene(s) and (2) the perspective that autism is caused by environmental factors like vaccines and pollution and could be cured by addressing environmental causes.[1]

The movement is controversial. There are a wide variety of both supportive and critical opinions about the movement among people who are autistic or associated with autistic people.

There are several organizations in the autism rights movement. Some, like the Autistic Self Advocacy Network have non-profit status while others such as Autism Network International do not.

History[edit]

Jim Sinclair was the first individual to communicate the anti-cure or autism rights perspective in the late 1980s.[1] In 1992, Sinclair co-founded the Autism Network International, an organization that publishes newsletters "written by and for autistic people". Other individuals involved in the creation of the ANI were Donna Williams and Kathy Grant, two autistic individuals who knew Sinclair through pen pal lists and autism conferences. The first issue of the newsletter, "Our Voice", was distributed online in November 1992, to an audience of mostly neuro-typical professionals and parents of young children with autism. The number of autistics in the organization grew slowly, over the years, and it eventually became a communication network for like-minded autistics.[6]

In 1996, a yearly retreat known has Autreat was established. Autreat is a United States retreat and conference hosted by the autism rights organization, Autism Network International, specifically for autistic people.[7] As of 2012, Autreat has been held every year, except for 2001.

In 2004, Michelle Dawson challenged applied behavior analysis (ABA), on ethical grounds. She testified in Auton v. British Columbia against the required government funding of ABA.[8] That same year The New York Times covered the autism rights perspective by publishing Amy Harmon's article, "How about not curing us? Some autistics are pleading."[9]

In 2005, Aspies for Freedom founded Autistic Pride Day. Every year on June 18 events are held across the globe.

In 2006, the Autism Acceptance Project was founded by Estée Klar, the mother of a child with autism, with help from an autistic advisory and board.[10]

In 2008, the Autistic Self Advocacy Network (ASAN) succeeded in halting two ad campaigns it stated were demeaning to autistics. The first ads were a series published by the NYU Child Study Center that appeared in the form of ransom notes. One read, "We have your son. We will make sure he will no longer be able to care for himself or interact socially as long as he lives. This is only the beginning", and was signed, "Autism".[1] The second ads were published by PETA and featured a bowl of milk with the left over bits of cereal forming a frowning face. The text read, “Got autism?” and was meant to advertise what PETA claims is a link between autism and the casein in milk. Phone calls, letters and petitions organized by ASAN led to the removal of these ads.[11][12]

In 2011, the first Autism Acceptance Day celebrations were organized by Paula Durbin Westby, as a response to traditional “Autism Awareness” campaigns which the Autistic community found insufficient and/or harmful.[13][14] Autism Acceptance Day is now held every April.[13]

The rise of the Internet has provided more opportunities for autistic individuals to connect and organize. Considering the geographical distance, communication and speech patterns of autistic individuals, and the domination of neurotypical professionals and family members in established autism organizations, the Internet has provided an invaluable space for members of the movement to organize and communicate.[5][6]

The seven-colored heptagon of ASAN
The Autistic Self-Advocacy Network (ASAN) uses a seven-colored heptagonal symbol to represent both the autistic spectrum and the idea of diversity.

Groups in the movement[edit]

  • Autism Network International (ANI) is a self-advocacy organization that was founded in 1992 by autistic individuals.
  • Autistic Self Advocacy Network (ASAN) is a self-advocacy organization founded by Ari Ne'eman to represent the autistic community and further the autism rights movement.
  • Autism Women's Network (AWN) is a self-advocacy organization founded by several Autistic women and focused on the intersection of the autism rights movement with feminism.
  • Aspies For Freedom (AFF) was a web-based organization for the autism community that had more than 20,000 members. Aspies For Freedom no longer exists, but some of its former members have reorganized at the online communities of Autism Friends Network and ASDCommunity.
  • Don't Play Me, Pay Me is a UK campaign, focusing on Asperger syndrome, encouraging and supporting actors with neurological conditions

Events and activities[edit]

  • The ANI annually hosts Autreat, a retreat-style conference developed to allow autistic individuals to meet, socialize and learn advocacy skills in an "autism friendly" environment. It was founded in 1996.[4]
  • In 2005, Aspies for Freedom founded Autistic Pride Day. Every year on June 18 events are held across the globe.
  • In 2008, the Autistic Self Advocacy Network (ASAN) succeeded in halting two ad campaigns it stated were demeaning to autistics. The first ads were a series published by the NYU Child Study Center that appeared in the form of ransom notes. One read, "We have your son. We will make sure he will no longer be able to care for himself or interact socially as long as he lives. This is only the beginning", and was signed, "Autism".[1] The second ads were published by PETA and featured a bowl of milk with the left over bits of cereal forming a frowning face. The text read, “Got autism?” and was meant to advertise what PETA claims is a link between autism and the casein in milk. Phone calls, letters and petitions organized by ASAN resulted in the removal of these ads.[11][12]
  • In 2011, the first Autism Acceptance Day celebrations were organized by Paula Durbin Westby as a response to traditional “Autism Awareness” campaigns which the Autistic community found harmful and insufficient.[13][14] Autism Acceptance Day is now held every April.[13]
  • Advocates have implemented several experimental programs for alternative education for individuals on the spectrum. For instance, the School of ASPIE (Autistic Strength, Purpose and Independence in Education) in Boiceville, New York aims to help autistics cope with a non-autistic world, but stresses that it is acceptable and expected that they "act autistic".[9]

Issues[edit]

Anti-cure perspective[edit]

"Curing" and/or "treating" autism is a controversial and politicized issue. Doctors and scientists are not sure of the cause(s) of autism yet many organizations like Defeat Autism Now! and Autism Speaks advocate researching a cure. Members of the various autism rights organizations view autism as a way of life rather than as a disease and thus advocate acceptance over a search for a cure.[9][15] Some advocates believe that common treatments for the behavioral and language delays associated with autism, like applied behavior analysis therapy, are not only misguided but also unethical.[16]

The "anti-cure perspective" endorsed by the movement is a view that autism is not a disorder, but a normal occurrence—an alternate variation in brain wiring or a less common expression of the human genome.[9] Advocates of this perspective believe that autism is a unique way of being that should be validated, supported and appreciated rather than shunned, discriminated against or eliminated.[9][17] They believe quirks and uniqueness of autistic individuals should be tolerated as the differences of any minority group should be tolerated and that efforts to eliminate autism should not be compared, for example, to curing cancer but instead to the antiquated notion of curing left-handedness.[9][18] The ARM is a part of the larger disability rights movement, and as such acknowledges the social model of disability.[19] Within the model, struggles faced by autistic people are viewed as discrimination rather than deficiencies.

Jim Sinclair, a leader in the movement, argues that autism is essential to a person, not a disease secondary to the person. He says that wishing that an autistic person be cured is equivalent to wishing that he disappear and another completely different person exist in his place.[20] Visions for a future where autism has been eradicated, he believes, is the desire to end the autistic culture.[20]

Some movement members with Asperger syndrome, who do not have the language delays typical of autistic individuals, believe their way of life should be respected and they should be left alone completely. Other members agree that autistics should not be made to act exactly like everyone else, but that they should receive therapy to help them learn to communicate in innovative ways or regulate emotions.[8][21]

Simon Baron-Cohen, a professor of developmental psychology at Trinity College, Cambridge and an autism researcher, expressed the latter view.[22] Baron-Cohen said:[15]

I do think there is a benefit in trying to help people with autism-spectrum conditions with areas of difficulty such as emotion recognition. Nobody would dispute the place for interventions that alleviate areas of difficulty, while leaving the areas of strength untouched. But to talk about a 'cure for autism' is a sledge-hammer approach and the fear would be that in the process of alleviating the areas of difficulty, the qualities that are special - such as the remarkable attention to detail, and the ability to concentrate for long periods on a small topic in depth - would be lost. Autism is both a disability and a difference. We need to find ways of alleviating the disability while respecting and valuing the difference.

Autism treatment[edit]

Further information: Autism therapies

Aspies For Freedom claims that the most common therapies for autism are unethical. They argue that ABA therapy and restriction of stimming "and other autistic coping mechanisms" are mentally harmful, that aversion therapy and the use of restraints are physically harmful, and that alternative treatments like chelation are dangerous.[3] Michelle Dawson, a Canadian autism self-advocate, testified in court against government funding of ABA therapy.[18] An autistic person named Jane Meyerding criticized therapy which attempts to remove autistic behaviors because she says that the behaviors that the therapy tries to remove are attempts to communicate.[9]

Elimination of autism[edit]

Since those in the autism rights movement see autism as a natural human variation and not a disorder, they are opposed to attempts to eliminate autism. In particular, there is opposition to prenatal genetic testing of autism in unborn fetuses, which some believe might be possible in the future (see Heritability of autism). Some worry that this can prevent autistic people from being born.[9] On February 23, 2005 Joseph Buxbaum of the Autism Genome Project at the Icahn School of Medicine at Mount Sinai said there could be a prenatal test for autism within 10 years.[23] However, the genetics of autism have proven to be extremely complex.[24] In any case, the Autistic Genocide Clock was started in response to this, which counts down to 10 years after Buxbaum made this announcement.[25] The public has started to debate the ethics involved in the possible elimination of a genotype that has liabilities and advantages, which may be seen as tampering with natural selection.[26]

Some people lament that professionals, such as social workers, may discourage autistics from having children.[27] Some are concerned that the "ultimate cure will be a genetic test to prevent autistic children from being born"[9] and that most fetuses with autism would be aborted if prenatal tests for autism are developed.[15]

Perception of autism[edit]

The puzzle piece ribbon is used by some autism societies, though it also represents controversy.[citation needed]

Autism is classified as a disorder, rather than the variation in functioning preferred by supporters of neurodiversity, with an attendant focus on the burden placed on society in caring for autistic individuals. Caring for individuals with autism has been compared to treating a patient with cancer, though extended over the duration of a normal lifespan.[28] Autistic children have also been described as being held hostage to a psychiatric disorder.[29] Others have used the term "mad child disease" to describe autism,[30] which some autistic individuals and their parents have found highly offensive.[31] Margaret Somerville, founding director of the McGill Centre for Medicine, Ethics and Law, said that with activism there is a direct goal and it is sometimes necessary to sacrifice complexity and nuance to make a point, but some autistic activists don't believe desperation justifies the rhetoric.[8] Bennett L. Leventhal said he understands concern about comparing autistic children to victims of hostage but thinks the campaigns make the point that these are real diseases that will consume children if untreated.[29] Autistic rights activists also reject terming the reported increase in the autistic population as an 'epidemic' since the word implies autism is a disease.[32]

Attempts have also been made to place a figure on the financial cost of autism, addressed to both scholarly[33] and popular audiences.[34] These efforts have been criticized by some autism rights advocates, who compare them to similar calculations about “persons with bad heredity” made by the eugenics movement in the early 20th century—a movement currently in disrepute.[35] Michelle Dawson has pointed out that no effort has been made to examine the cost of 'eliminating the disease' to autistic individuals,[36] and she, as well as others, have also pointed out the valuable contributions autistic individuals can, and have made to society.[36][37]

Autistic traits[edit]

Some autistic rights activists believe some characteristics described as being autistic traits are actually misconceptions.[38] Michelle Dawson has disputed the belief that 75% of autistic people have low intelligence.[8] Psychiatrist Laurent Mottron of Hôpital Rivière-des-Prairies in Montreal says that autistic people often score much higher on a nonverbal test of abstract reasoning than on a standard IQ test.[39] Some autistics have claimed that non-autistics are insensitive to their perspectives, and write parodies based on this, addressing non-autism as a mental disorder characterized by lack of "theory of other minds".[40][41]

Jim Sinclair, who has also been a target of similar criticism from very early on, goes into detail about "the politics of opposition to self-advocacy".[42]

The controversy has erupted on autism e-mail lists, where some parents are "derided" as "curebies" and "portrayed as slaves to conformity, so anxious for their children to appear normal that they cannot respect their way of communicating".[9] These parents respond that this attitude shows "a typical autistic lack of empathy by suggesting that they should not try to help their children". Lenny Schafer said that the autism-like lack of empathy of anti-cure activists prevent them from seeing what is in the hearts of pro-cure advocates.[43]

Functioning labels[edit]

Some autistic activists say it is not easy to distinguish between high and low functioning.[9] Some autistic individuals, in contrast, are supportive of the distinction between the low and high functioning labels as well as autism and Asperger syndrome, and believe it is important in helping individuals get proper consultation and treatment.[44]

Inclusion in the autism debate[edit]

A common theme expressed among autism rights activists and neurodiversity groups is that they are different from parent- and professional- led organizations and conferences that dominate the autism scene. Michelle Dawson criticizes the norm of allowing parents to speak on behalf of their autistic children at conferences to the exclusion of autistics. "With the happy and proud collaboration of governments, courts, researchers, service providers, and funding bodies," she says, "parents have succeeded in removing autistics from the vicinity of any important discussions or decisions." This exclusion results in policy and treatment decisions being made solely by individuals who do not directly experience autism.[28]

Jim Sinclair states that autism conferences are traditionally geared toward neurotypical parents and professionals, and that to an autistic person they may be quite "hostile" in terms of sensory stimulation and rigidity.[6]

Criticisms and counter-movements[edit]

Parents with the perspective of autism as a disorder (which is called the "pro-cure perspective" in the autism rights movement) believe that therapy with the intent of extinguishing stereotypically autistic behavior is in their children's best interests; they see this as a "cure" that will reduce their children's suffering.[45][46] These critics say ABA gives autistic children the best chance of success in adulthood, as they either do not believe it is possible that adult society could accommodate autistic people (who have not been trained by ABA to exhibit neurotypical behavior at all times) or they do not believe it is desirable to do so.

Some parents believe that intensive behavioral therapy is the only way to "rescue" autistic children.[9] Some critics also fear that the movement will prevent other autistic children from receiving treatment. Neurotypical mother Kit Weintraub has responded to Michelle Dawson's claims that ABA is harmful by insisting that it is medically necessary and appropriate treatment, and that it is harmful to deny it to autistic children who need it.[47]

There are also accusations about how well autistic people of different functioning levels are represented in the movement. Critics of the movement argue that anyone on the autism spectrum who is able to express their desire not to be cured must be high functioning autistic or have Asperger syndrome,[9] despite the existence of low-functioning autism rights advocates such as Amanda Baggs. Lenny Schafer argues that if one would change every use of autism to read Asperger syndrome the movement might "make sense",[9] although the upcoming incorporation of Asperger syndrome into the autism diagnosis in the DSM-V has been used as a counterargument by the autism rights movement.[48]

Sue Rubin, the subject of the Oscar-nominated documentary Autism Is A World, is an example of an adult with autism 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.".[44]

In defiance of the common complaint that anti-cure advocates' ability to articulate complex opinions in writing—which some critics see as being impossible for autistic people[18]—autistic adults such as Amanda Baggs use their own writing and videos to demonstrate that it is possible for severely disabled autistics to be autism rights advocates.[49] She says that when the critics assume that intelligent and articulate autistic people do not have difficulties like self-injurious behavior and difficulty with self-care, they affect the opinions of policy makers and make it more difficult for intelligent and articulate autistic people to get services. Baggs cites an example of an autistic person who was denied services when it was discovered that she could type.[50]

Notes[edit]

  1. ^ a b c d e Solomon, Andrew (2008-05-25). "The autism rights movement". New York. Archived from the original on 27 May 2008. Retrieved 2008-05-27. 
  2. ^ Mission Statement. Autism Acceptance Project. Retrieved on 2008-11-24.
  3. ^ a b Mission Statement. Aspies for Freedom. Retrieved on 2008-11-24.
  4. ^ a b Autism Network International presents Autreat. (2008-05-23) AIN.
  5. ^ a b "Declaration From the Autism Community That They Are a Minority Group" (Press release). PRWeb, Press Release Newswire. 2004-11-18. Retrieved 2007-11-07. 
  6. ^ a b c Sinclair, Jim. History of ANI. Retrieved November 12, 2005.
  7. ^ Sinclair, Jim. History of ANI. Retrieved 12 November 2005.
  8. ^ a b c d Collier, Roger. "Autism". The Ottawa Citizen (2007-12-01). Retrieved on 2008-02-17.
  9. ^ a b c d e f g h i j k l m n 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. 
  10. ^ http://www.taaproject.com/
  11. ^ a b Got Autism? Learn About the Links Between Dairy Products and the Disease. PETA. Retrieved on 2008-11-24.
  12. ^ a b Ne'eman, Ari. (October 2008) PETA Billboard Removal. The Autistic Self Advocacy Network.
  13. ^ a b c d http://www.autismacceptancemonth.com/acceptance-month-conclusion/
  14. ^ a b http://www.autismacceptancemonth.com/about/
  15. ^ a b c Saner E (2007-08-07). "It is not a disease, it is a way of life". The Guardian. Archived from the original on 20 August 2007. Retrieved 2007-08-07. 
  16. ^ Dawson, Michelle. The Misbehaviour of Behaviourists. (2004-01-18). Retrieved on 2007-01-23.
  17. ^ Gal L (2007-06-28). "Who says autism's a disease?". Haaretz. Archived from the original on 1 July 2007. Retrieved 2007-07-16. 
  18. ^ a b c "In Support of Michelle Dawson and Her Work". Autistics.org. Retrieved 2012-03-21. 
  19. ^ Waltz, M (2013). Autism: A Social and Medical History. London: Palgrave Macmillan. ISBN 0230527507. 
  20. ^ a b Sinclair, Jim (1993). "Don't mourn for us". The Edmonds Institute. Archived from the original on 20 October 2007. Retrieved 2007-11-07. 
  21. ^ Woodford, Gillian. "'We Don't Need To Be Cured,' Autistics Say." National Review of Medicine. Volume 3 Number 8. 2006-04-30. Retrieved on 2008-02-10.
  22. ^ Else L (2001). "In a different world". New Scientist (2286): 42. 
  23. ^ Herrera, Sue (2005-02-23). "Autism research focuses on early intervention: Genetic clues sought in fight against disorder". MSNBC. Archived from the original on 26 October 2007. Retrieved 2007-11-07. 
  24. ^ Freitag CM (2007). "The genetics of autistic disorders and its clinical relevance: a review of the literature". Mol Psychiatry 12 (1): 2–22. doi:10.1038/sj.mp.4001896. PMID 17033636. 
  25. ^ "The Autistic Genocide Clock". Ventura33 FanFiction. Archived from the original on 15 October 2007. Retrieved 2007-11-07. 
  26. ^ Caplan, Arthur (2005-05-31). "Would you have allowed Bill Gates to be born? Advances in prenatal genetic testing pose tough questions". MSNBC. Archived from the original on 12 November 2007. Retrieved 2007-11-07. 
  27. ^ Trivedi B (2005). "Autistic and proud of it". New Scientist (2504): 36. 
  28. ^ a b Dawson, Michelle (2003-09-09). "Bettelheim's Worst Crime: Autism and the Epidemic of Irresponsibility". Michelle Dawson's No Autistics Allowed. Archived from the original on 31 October 2007. Retrieved 2007-11-07. 
  29. ^ a b Kaufman, Joanne. Campaign on Childhood Mental Illness Succeeds at Being Provocative. The New York Times. 2007-12-14. Retrieved on 2008-02-24.
  30. ^ Glueck, MA; Cihak, RJ (2004-09-13). "Mad Child Disease". Newsmax.com. Retrieved 2007-01-04. 
  31. ^ "Petition to Defend the Dignity of Autistic Citizens". neurodiversity.com. July 2005. Archived from the original on 27 September 2007. Retrieved 2007-11-07. 
  32. ^ "The "Autism Epidemic" & Real Epidemics". neurodiversity.com. 2005-03-25. Retrieved 2008-01-04. 
  33. ^ John L R Rubenstein; Moldin, Steven O. (2006). Understanding autism: from basic neuroscience to treatment. Boca Raton: Taylor & Frances. ISBN 0-8493-2732-6. 
  34. ^ "Autism Clock". fightingautism.org. Archived from the original on 2007-07-21. Retrieved 2008-01-04. 
  35. ^ "Then and Now: 1926, The Bad Old Days". autistics.org. Archived from the original on 2 January 2008. Retrieved 2008-01-04. 
  36. ^ a b Dawson, Michelle (2007-04-03). "The autistic person's burden". Retrieved 2008-01-04. 
  37. ^ Gernsbacher, MA (2007-04-01). "The True Meaning of Research Participation". Association for Psychological Science. Retrieved 2008-01-04. 
  38. ^ "What is NT?". Institute for the Study of the Neurologically Typical. 2002-03-18. Archived from the original on 17 October 2007. Retrieved 2007-11-07. 
  39. ^ Bower, Bruce (2007-07-07, Vol. 172, No. 1, p. 4). "Hidden Smarts: Abstract thought trumps IQ scores in autism". Science News Online. Archived from the original on 2007-10-12. Retrieved 2007-11-08. 
  40. ^ "The Sal and Anne Test: Implications, and Theory of Mind". Institute for the Study of the Neurologically Typical. 1998-09-26. Retrieved 2012-03-21. 
  41. ^ "NT Theory of Mind". Institute for the Study of the Neurologically Typical. Retrieved 2012-11-03. 
  42. ^ Sinclair, Jim (January 2005). "Autism Network International: The Developnment of a Community and its Culture". Jim Sinclair's personal website. Archived from the original on 2007-08-26. Retrieved 2007-11-07. 
  43. ^ Schafer, Lenny. "Response to Letters: Somewhere Over the Spectrum, Part 3." Volume 9 Number 5. (January 2005). Retrieved on 2008-01-04.
  44. ^ a b Rubin, Sue. Acceptance versus Cure. CNN Programs - Presents. Retrieved on 2008-02-17.
  45. ^ "On "curing" autism". wampum.wabanaki.net. 2005-01-15. Retrieved 2007-11-07. [dead link]
  46. ^ Weintraub, Kit. "Letter to the NY Times from Kit Weintraub". The Schafer Autism Report. Archived from the original on 28 September 2007. Retrieved 2007-11-07. 
  47. ^ Weintraub, Kit. A Mother's Perspective. Retrieved on 2007-01-24.
  48. ^ Dawson, Michelle. The Autism Crisis: Proposed new autism criteria: the DSM-V. Retrieved on 2010-05-20.
  49. ^ Wolman, David. The Truth About Autism: Scientists Reconsider What They Think They Know. Retrieved on 2010-05.20.
  50. ^ Baggs, AM (2005). "To the Kit Weintraubs of the World". autistics.org. Archived from the original on 13 October 2007. Retrieved 2007-11-07. 

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