|March 26, 2016|
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.
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.
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.
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. 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.
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.
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.
Simon Baron-Cohen, a professor of developmental psychology at Trinity College, Cambridge and an autism researcher, expressed the latter view. Baron-Cohen said:
Jim Sinclair was the first individual to communicate the anti-cure or autism rights perspective in the late 1980s. 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.
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.
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.
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. Michelle Dawson, a Canadian autism self advocate, testified in court against government funding of ABA therapy.
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. In any case, the Autistic Genocide Clock was started in response to this, which counts down to 10 years after Buxbaum made this announcement. 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.
Some people lament that professionals, such as social workers, may discourage autistics from having children.
Perception of autism
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. 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. Autistic rights activists also reject terming the reported increase in the autistic population as an ' epidemic' since the word implies autism is a disease.
Attempts have also been made to place a figure on the financial 'cost' of autism, addressed to both scholarly and popular audiences. These efforts have been criticized by some autism rights advocates, comparing it to the now-reviled eugenics movement in the early 20th century. Michelle Dawson has pointed out that no effort has been made to examine the cost of 'eliminating the disease' to autistic individuals, and she, as well as others, have also pointed out the valuable contributions autistic individuals can, and have made to society.
Some autistic rights activists believe some characteristics described as being autistic traits are actually misconceptions. Michelle Dawson has disputed the belief that 75% of autistic people have low intelligence. 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".
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".
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". 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.
Some autistic activists say it is not easy to distinguish between high and low functioning.
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.
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.
The movement has been criticized for its alleged failure to incorporate diversity and include certain subgroups within the autistic community. It has also been criticized because some of its members write material which is insulting to neurotypical individuals.
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. 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.
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, 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 .
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.".
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 -- 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.
GNU Free Documentation License. It uses material from the Wikipedia article "autism rights movement".
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