Autism rights movement: Wikis

  
  

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Autism rights movement
Philosophy
Neurodiversity · Neurotypical · Sociological and cultural aspects
Organizations
Aspies For Freedom · Autism National Committee · Autism Network International · Autistic Self Advocacy Network ·
Events
Autistic Pride Day · Autreat
Issues
Judge Rotenberg Educational Center · Karen McCarron

The autism rights movement (ARM) (also neurodiversity movement or anti-cure movement or autistic culture movement) is a social 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 autistics 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 autism spectrum disorders are 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 spectrum disorders are 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 and there are a wide variety of both supportive and critical opinions about the movement among people whose lives are affected by autism.

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

Contents

Anti-cure perspective

Curing autism is a controversial and politicized issue. Doctors and scientists are not clear on 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.[6][7] Some advocates believe that common treatments for the behavioral and speech delays associated with autism, like Applied behavior analysis therapy, are not only misguided but also unethical.[8]

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.[6] 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 cured.[6][9] 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 cure autism should not be compared, for example, to curing cancer but instead to the antiquated notion of curing left-handedness.[6][10]

Variations within the anti-cure movement are diverse. 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.[11] Visions for a future where autism has been eradicated, he believes, is the desire to end the autistic culture.[11] 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.[12][13]

Simon Baron-Cohen, a professor of developmental psychology at Trinity College, Cambridge and an autism researcher, expressed the latter view.[14] Baron-Cohen said:[7]

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.

History

Jim Sinclair was the first individual to communicate the anti-cure or autism rights perspective in the late 1980s.[1] In 1992 he 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 that 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 became a communication network for like-minded autistics.[15]

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.[12] 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."[6]

The rise of the internet provided more opportunities for autistic individuals to connect and organize. Due to geographical distance, communication and speech patterns of autistic individuals and the domination of neurotypical professionals and family members in established autism organizations, the internet provided an invaluable space for members of the movement to organize and communicate.[5][15]

Groups in the movement

Events and activities

  • The ANI annually hosts Autreat, a retreat-style conference developed to allow autistic individuals to meet, socialize and learn advocacy skills in an "autistic-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 found 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.[16][17]
  • 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, NY aims to help autistics cope with a non-autistic world, but stresses that it is acceptable and expected that they "act autistic".[6]

Issues

Autism treatment

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.[10] 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.[6]

Elimination of autism

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.[6] On February 23, 2005 Joseph Buxbaum of the Autism Genome Project at the Mount Sinai School of Medicine said there could be a prenatal test for autism within 10 years.[18] However, the genetics of autism have proven to be extremely complex.[19] In any case, the Autistic Genocide Clock was started in response to this, which counts down to 10 years after Buxbaum made this announcement.[20] 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.[21]

Some people lament that professionals, such as social workers, may discourage autistics from having children.[22] Some are concerned that the "ultimate cure will be a genetic test to prevent autistic children from being born"[6] and that most fetuses with autism would be aborted if prenatal tests for autism are developed.[7]

Perception of autism

The puzzle piece ribbon is used by some autism societies, while others find it to be insulting.

Autism has been compared to a disease, 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.[23] Autistic children have also been described as being held hostage to a psychiatric disorder.[24] Others have used the term "mad child disease" to describe autism,[25] which some autistic individuals and their parents have found highly offensive.[26] 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.[12] 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.[24] Autistic rights activists also reject terming the reported increase in the autistic population as an 'epidemic' since the word implies autism is a disease.[27]

Attempts have also been made to place a figure on the financial 'cost' of autism, addressed to both scholarly[28] and popular audiences.[29] These efforts have been criticized by some autism rights advocates, comparing it to the now-reviled eugenics movement in the early 20th century.[30] Michelle Dawson has pointed out that no effort has been made to examine the cost of 'eliminating the disease' to autistic individuals,[31] and she, as well as others, have also pointed out the valuable contributions autistic individuals can, and have made to society.[31][32]

Autistic traits

Some autistic rights activists believe some characteristics described as being autistic traits are actually misconceptions.[33] Michelle Dawson has disputed the belief that 75% of autistic people have low intelligence.[12] Psychologist 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.[34] 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".[35][36]

Jim Sinclair, who has also been target of similar criticism from very early on, goes into detail about "the politics of opposition to self-advocacy".[37]

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".[6] 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.[38]

Functioning labels

Some autistic activists say it is not easy to distinguish between high and low functioning.[6] 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.[39]

Inclusion in the autism debate

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.[23]

Jim Sinclair notes that autism conferences are traditionally geared toward neurotypical parents and professionals. To an autistic person they may be quite "hostile" in terms of sensory stimulation and rigidity.[15]

Criticisms and counter-movements

Parents with the perspective of autism as a disorder (which is called the pro-cure perspective in the autism rights movement) believe that a cure for autism is in their children's best interests because they see a cure as something that will reduce suffering.[40][41] According to The New York Times, these critics say ABA gives autistic children the best chance of success in adulthood. Some parents believe that intensive behavioral therapy is the only way to "rescue" autistic children.[6] Some critics also fear that the movement will prevent other autistic children from receiving treatment. Kit Weintraub has responded to Michelle Dawson's claims that ABA is harmful by saying that it is harmful to deny medically necessary and appropriate treatment to autistic children who need it. Weintraub said she does not want ideology to triumph over the welfare of autistic children.[42]

The movement has been criticized for its own failure to incorporate diversity, include certain subgroups within the autistic community and that some in the movement are insulting to neurotypical individuals.[43]

There is also controversy about how well autistic people of different functioning levels are represented in the movement. Critics of the movement argue that the autistic spectrum people opposed to a cure are high functioning autistic or have Asperger syndrome[6] and that they have the ability to communicate. Sue Rubin, an adult with autism who was the subject of the Oscar-nominated documentary Autism Is A World, is an example of an adult aligned with the cure group who says that the divide in the autism community is between high-functioning and low-functioning people; she says people with Asperger syndrome can communicate well and "pass for normal", while low-functioning people have severe disabilities. She says "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."[39][39] Lenny Schafer argues that if one would change every use of autism to read Asperger syndrome the movement might "make sense".[6]

A common complaint is that anti-cure advocates are clearly able to articulate complex opinions in writing, which is seen by some critics as inconsistent with a diagnosis of autism.[10] Some autistic authors such as Amanda Baggs have claimed that this is not always the case that anti-cure autistics have mild difficulties.[44] 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 based on having an IQ above 70.[44]

Notes

  1. ^ a b c d Solomon, Andrew (2008-05-25). "The autism rights movement". New York. http://nymag.com/news/features/47225/. 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 PRWeb, Press Release Newswire (2004-11-18). "Declaration From the Autism Community That They Are a Minority Group". Press release. http://www.prweb.com/releases/2004/11/prweb179444.htm. Retrieved 2007-11-07. 
  6. ^ 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. http://www.nytimes.com/2004/12/20/health/20autism.html. Retrieved 2007-11-07. 
  7. ^ a b c Saner E (2007-08-07). "It is not a disease, it is a way of life". The Guardian. http://society.guardian.co.uk/health/story/0,,2143123,00.html. Retrieved 2007-08-07. 
  8. ^ Dawson, Michelle. The Misbehaviour of Behaviourists. (2004-01-18). Retrieved on 2007-01-23.
  9. ^ Gal L (2007-06-28). "Who says autism's a disease?". Haaretz. http://www.haaretz.com/hasen/spages/876283.html. Retrieved 2007-07-16. 
  10. ^ a b c "In Support of Michelle Dawson and Her Work". Autistics.org. http://www.autistics.org/library/dawson.html. Retrieved 2007-11-07. 
  11. ^ a b Sinclair, Jim (1993). "Don't mourn for us". The Edmonds Institute. http://www.edmonds-institute.org/dontmour.html. Retrieved 2007-11-07. 
  12. ^ a b c d Collier, Roger. "Autism". The Ottawa Citizen (2007-12-01). Retrieved on 2008-02-17.
  13. ^ 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.
  14. ^ Else L (2001). "In a different world". New Scientist (2286): 42. 
  15. ^ a b c Sinclair, Jim. History of ANI. Retrieved November 12, 2005.
  16. ^ Got Autism? Learn About the Links Between Dairy Products and the Disease. PETA. Retrieved on 2008-11-24.
  17. ^ Ne'eman, Ari. (October 2008) PETA Billboard Removal. The Autistic Self Advocacy Network.
  18. ^ Herrera, Sue (2005-02-23). "Autism research focuses on early intervention: Genetic clues sought in fight against disorder". MSNBC. http://www.msnbc.msn.com/id/7013251. Retrieved 2007-11-07. 
  19. ^ 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. http://www.nature.com/mp/journal/v12/n1/full/4001896a.html. 
  20. ^ "The Autistic Genocide Clock". Ventura33 FanFiction. http://www.ventura33.com/clock/. Retrieved 2007-11-07. 
  21. ^ Caplan, Arthur (2005-05-31). "Would you have allowed Bill Gates to be born? Advances in prenatal genetic testing pose tough questions". MSNBC. http://www.msnbc.msn.com/id/7899821/. Retrieved 2007-11-07. 
  22. ^ Trivedi B (2005). "Autistic and proud of it". New Scientist (2504): 36. 
  23. ^ a b Dawson, Michelle (2003-09-09). "Bettelheim's Worst Crime: Autism and the Epidemic of Irresponsibility". Michelle Dawson's No Autistics Allowed. http://www.sentex.net/~nexus23/md_01.html. Retrieved 2007-11-07. 
  24. ^ 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.
  25. ^ Glueck, MA; Cihak, RJ (2004-09-13). "Mad Child Disease". Newsmax.com. http://archive.newsmax.com/archives/articles/2004/9/13/112130.shtml. Retrieved 2007-01-04. 
  26. ^ "Petition to Defend the Dignity of Autistic Citizens". neurodiversity.com. July 2005. http://www.neurodiversity.com/mothers_for_dignity.html. Retrieved 2007-11-07. 
  27. ^ "The "Autism Epidemic" & Real Epidemics". neurodiversity.com. 2005-03-25. http://www.neurodiversity.com/mind_epidemic.html. Retrieved 2008-01-04. 
  28. ^ John L R Rubenstein; Moldin, Steven O. (2006). Understanding autism: from basic neuroscience to treatment. Boca Raton: Taylor & Frances. ISBN 0849327326. 
  29. ^ "Autism Clock". fightingautism.org. http://www.fightingautism.org/clock/index.php. Retrieved 2008-01-04. 
  30. ^ "Then and Now: 1926, The Bad Old Days". autistics.org. http://www.autistics.org/library/thenandnow.html. Retrieved 2008-01-04. 
  31. ^ a b Dawson, Michelle (2007-04-03). "The autistic person's burden". http://autismcrisis.blogspot.com/2007/04/autistic-persons-burden.html. Retrieved 2008-01-04. 
  32. ^ Gernsbacher, MA (2007-04-01). "The True Meaning of Research Participation". Association for Psychological Science. http://www.psychologicalscience.org/observer/getArticle.cfm?id=2147. Retrieved 2008-01-04. 
  33. ^ "What is NT?". Institute for the Study of the Neurologically Typical. 2002-03-18. http://isnt.autistics.org/. Retrieved 2007-11-07. 
  34. ^ Bower, Bruce (2007-07-07, Vol. 172, No. 1, p. 4). "Hidden Smarts: Abstract thought trumps IQ scores in autism". Science News Online. http://www.sciencenews.org/articles/20070707/fob4.asp. Retrieved 2007-11-08. 
  35. ^ "The Sal and Anne Test: Implications, and Theory of Mind". Institute for the Study of the Neurologically Typical. 1998-09-26. http://isnt.autistics.org/salanne.html. Retrieved 2007-11-07. 
  36. ^ "NT Theory of Mind". Institute for the Study of the Neurologically Typical. http://isnt.autistics.org/theory_of_mind.html. Retrieved 2007-11-07. 
  37. ^ Sinclair, Jim (January 2005). "Autism Network International: The Developnment of a Community and its Culture". Jim Sinclair's personal website. http://web.archive.org/web/20070826110842/http://web.syr.edu/~jisincla/History_of_ANI.html. Retrieved 2007-11-07. 
  38. ^ Schafer, Lenny. "Response to Letters: Somewhere Over the Spectrum, Part 3." Volume 9 Number 5. (January 2005). Retrieved on 2008-01-04.
  39. ^ a b c Rubin, Sue. Acceptance versus Cure. CNN Programs - Presents. Retrieved on 2008-02-17.
  40. ^ "On "curing" autism". wampum.wabanaki.net. 2005-01-15. http://wampum.wabanaki.net/archives/001574.html. Retrieved 2007-11-07. 
  41. ^ Weintraub, Kit. "Letter to the NY Times from Kit Weintraub". The Schafer Autism Report. http://www.sarnet.org/ltr/weintraub1-05.htm. Retrieved 2007-11-07. 
  42. ^ Weintraub, Kit. A Mother's Perspective. Retrieved on 2007-01-24.
  43. ^ Smith, Joel (2005-06-18). "Autistic Pride Day: Do We Celebrate It Right?". autistics.org. http://web.archive.org/web/20051027204905/http://www.autistics.us/library/autpride2005.html. Retrieved 2007-11-08.  (wayback machine version)
  44. ^ a b Baggs, AM (2005). "To the Kit Weintraubs of the World". autistics.org. http://www.autistics.org/library/ambweintraub.html. Retrieved 2007-11-07. 

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