Autism rights movement
|Autism rights movement|
The autism rights movement (ARM), also known as the autistic culture movement, is a social movement within the neurodiversity and disability rights movements 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. The ARM advocates a variety of goals including a greater acceptance of autistic behaviors; therapies that teach autistic individuals coping skills rather than therapies focused on imitating behaviors of neurotypical peers, including extinguishing harmless stimming, forcing eye contact and breaking routines; the creation of social networks and events that allow autistic people to socialize on their own terms; and the recognition of the Autistic community as a minority group.
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 other likewise distinct views: (1) the mainstream 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.
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. A common criticism leveled against Autistic activists is that the majority of them are high-functioning or have Asperger syndrome and do not represent the views of all autistic people. Some prominent figures in the movement such as Amy Sequenzia are nonverbal and have been labeled as low-functioning.
- 1 History
- 2 Groups in the movement
- 3 Events and activities
- 4 Issues
- 5 Criticisms and counter-movements
- 6 See also
- 7 Notes
- 8 External links
Jim Sinclair was the first individual to communicate the anti-cure or autism rights perspective in the late 1980s. 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 ANI newsletter, Our Voice, was distributed online in November 1992, to an audience of mostly neurotypical professionals and parents of young autistic children. The number of autistics in the organization grew slowly, over the years, and it eventually became a communication network for like-minded autistics.
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. 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. 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."
Aspies For Freedom (AFF) was founded in 2004, and established June 18 as Autistic Pride Day starting in 2005. AFF was also instrumental in initiating protests against the National Alliance for Autism Research, Cure Autism Now, and the Judge Rotenberg Center.
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". 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.
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.
Groups in the movement
- Autism National Committee (AutCom) is an advocacy organization founded in 1990, dedicated to "Social Justice for All Citizens with Autism" with a focus on cooperation between Autistic people and their non-autistic allies.
- Autism Network International (ANI) is a self-advocacy organization that was founded in 1992 by Autistic individuals. ANI is the host of the annual Autreat conference.
- 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 Autistic 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 neurodivergent actors.
- Ollibean is an intersectional disability rights organization with a focus on neurodiversity.
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 "autism friendly" environment. It was founded in 1996.
- In 2005, Aspies For Freedom founded Autistic Pride Day, which is now celebrated internationally, every year on June 18.
- In 2010, an initiative by Corina Lynn Becker created Autistics Speaking Day as a response to the then-upcoming first commemoration of Communication Shutdown. The annual Communication Shutdown event encourages non-autistics to refrain from using social networking websites for one day as a perspective-taking exercise, while Autistics Speaking Day encourages Autistic people to become more active on social media and to describe their experiences during a time when there are fewer neurotypical voices in the mix.
- 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. Autism Acceptance Day is now held every April.
- In 2013, Tone It Down Taupe was created as a parody of Light It Up Blue, asking people to "tone down the fear rhetoric [and] alarmism." The campaign has successfully raised funds for multiple iPad giveaways to help autistic adults communicate.
- 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".
- Autism rights activists organize protests against organizations they consider objectionable, most notably Autism Speaks and the Judge Rotenberg Center.
"Curing" 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 Autism Research Institute 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 therapies for the behavioral and language differences associated with autism, like applied behavior analysis, 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. 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. 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. The ARM is a part of the larger disability rights movement, and as such acknowledges the social model of disability. 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. Sinclair says that wishing that an autistic person be cured is equivalent to wishing that they disappear and another completely different person exist in their place. Visions for a future where autism has been eradicated, he believes, is the desire to end the Autistic culture.
Some movement members with Asperger syndrome, who do not have the language differences 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. Simon Baron-Cohen, a professor of developmental psychology at Trinity College, Cambridge and an autism researcher, expressed the latter view. Baron-Cohen said:
|“||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.||”|
Aspies For Freedom claimed 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. 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.
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. 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. However, the genetics of autism have proven to be extremely complex. 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. Some are concerned that the "ultimate cure will be a genetic test to prevent autistic children from being born" and that most autistic fetuses would be aborted if prenatal tests for autism are developed.
Perception of autism
Autism is classified by psychologists 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. Autistic children have also been described as being held hostage to a psychiatric disorder. Others have used the term "mad child disease" to describe autism, which some autistic individuals and their parents have found highly offensive. 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. 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. 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 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, 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. 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. 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. Some autistics have claimed that non-autistics are insensitive to their perspectives, and write parodies based on this, addressing what they call allism (a lack of autism) as a mental disorder characterized by lack of "theory of other minds".
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. 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.
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 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.
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 Amelia Baggs use their own writing and videos to demonstrate that it is possible for severely disabled autistics to be autism rights advocates. 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.
As the most recognized name in autism advocacy worldwide, Autism Speaks is seen as representative of the pro-cure agenda, and is implicated in perpetuating many harmful misconceptions, including inaccurate diagnostic criteria, functioning labels, "person"-first language, the medical model of disability, equation of communication and intelligence, promotion of ABA therapy, comparisons between autism and diseases, the view of rising autism diagnosis rates as an epidemic, the concept of autism as something separable from autistic people, the view of autistic children as trapped or broken, the belief that vaccines cause autism, the belief that married couples with autistic children are more likely to divorce, and the belief that parent-on-child murder is caused by lack of services.
In addition to its cultural impact, Autism Speaks has been criticized for ignoring and excluding autistic people. John Elder Robison was the organization's only autistic board member, until he resigned in 2013, two days after the release of an op-ed by the group's co-founder Suzanne Wright which, according to Robison, "is simply not defensible for someone who feels as I do, and I cannot continue to stand up for the public actions of an organization that makes the same mistakes over and over again by failing to connect to the community it purports to represent." Simone Greggs, a mother of an autistic boy, filed a lawsuit against Autism Speaks for disability discrimination after her job offer was rescinded, alleging that it was due to her asking for an accommodation on behalf of her son.
Autism Speaks has been challenged on financial grounds, citing its poor rating on Charity Navigator as spending less than 65% of its budget on the programs it exists for, therefore being in the bottom 10% of non-profits in terms of efficiency. Further breakdowns reveal that a very small percentage of the money (3-4%) is spent on services for adults and families, while the largest portion goes towards research focused on prevention.
Autism Speaks has produced three major films, each met with strong opposition from the Autistic community. Autism Every Day is a documentary featuring interviews of parents with mostly negative opinions about autism and their situations. It has been criticized due to the parents speaking about their children as if they are not there, and especially for one particular interview, in which former board member Alison Singer talks about contemplating a murder-suicide of her autistic daughter. I Am Autism is a short video that personifies autism as a narrative voice, which compares itself to several diseases and makes the false claim of causing divorce. Sounding the Alarm is a documentary exploring the transition to adulthood and the cost of lifetime care. It was criticized for being "full of dehumanizing rhetoric" and portraying ignorance of nonverbal communication.
Because of the great number of objections to the organization, Autism Speaks fundraising events are frequently the object of organized protest, despite the communicative difficulties and social anxiety common among autistic people. Many of these protests are organized by the Autistic Self Advocacy Network. In 2013, the organization Boycott Autism Speaks published a list of companies that donate money to Autism Speaks along with their contact information, urging those in the Autistic community to pressure those companies into dropping their support via an active boycott, since appealing to Autism Speaks directly has proven ineffective. A month later, ASAN published its 2014 Joint Letter to the Sponsors of Autism Speaks, signed by 26 different disability-related organizations, appealing to the moral responsibility of the sponsors, donors, and other supporters.
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 therapy with the intent of extinguishing stereotypically autistic behavior is in their children's best interests; they see this as a treatment 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 alleviate autistic children's disabilities. Some critics also fear that the movement will prevent autistic children from receiving important therapies. 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.
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, despite the existence of autism rights activists labeled as low-functioning, such as Amelia Baggs. Lenny Schafer argues that if every use of autism were changed to read Asperger syndrome, then the movement might make sense, although the incorporation of Asperger syndrome into the autism diagnosis in the DSM-5 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 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.".
- Autistic culture
- Autistic Self Advocacy Network
- Aspies For Freedom
- Disability rights movement
- Autistic Pride Day
- Mad Pride
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- Autism National Committee Promotes the right to self-determination
- AutisticSociety.org - Autistic Society
- Auties.org - Self-employment and advocacy site for people on the spectrum, founded by Donna Williams
- Autreach - a network of UK Autism disabled people's organisations
- Autistic Self Advocacy Network
- Autism World
- Uncommongenius.org - Civil Rights for Autistics
- The Autistic Rights Movement UK - a not-for-profit voluntary unincorporated association. "The first UK national organisation run entirely by autistic people".]
- Autism Friends Network
- Boycott Autism Speaks