Autism rights movement

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Autism rights movement

Issues

Karen McCarron

Judge Rotenberg Educational Center

Organizations

Aspies For Freedom

Autism Network International

Events

Autistic Pride Day · Autreat

Philosophy

Sociological and cultural aspects

Neurodiversity · Neurotypical

People

Michelle Dawson · Temple Grandin

Amanda Baggs · Jim Sinclair

Donna Williams

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The autism rights movement (ARM) 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. The ARM advocate a greater tolerance of autistic behaviors, teaching autistic individuals skills that allow them to better cope with the non-autistic world rather than forcing them to behave like their neurotypical peers, and objects to treatment goals like extinguishing harmless stimming, forcing eye contact and breaking routines.

The ARM is controversial among those whose lives are affected by autism. Objections to the movement include a belief that the benefits claimed to accompany autism are overstated, and that the movement's activities may reduce funding for autism research and treatment. Parents of children with autism state that behavioral interventions used to treat autism help them care for children with aggressive or dangerous behaviors, and that autism exacts a toll on the entire family. Some critics have argued that the movement does not represent autistic people of all functioning levels.

The use of the Internet has made it possible for autistics to present their perspective when they do not have the communication skills to do so offline. These individuals do not believe autism can, or should be cured, instead believing that they deserve the opportunity to use their strengths to cope with difficulties presented by autism.

Contents 1 Anti-cure perspective 2 People in the movement 2.1 Organized groups 2.2 Individuals 2.3 "Neurotypical" supporters 2.4 Critics 3 History 4 Issues 4.1 Autism treatment 4.2 Elimination of autism 4.3 Perception of autism 4.4 Autistic traits 4.5 Functioning labels 4.6 Status as a social minority group 4.7 Diversity in autism 5 Notes 6 External links

[edit] Anti-cure perspective

Curing autism is a controversial and politicized issue. What some call the "autistic community" has splintered into several strands. Some seek a cure for autism—sometimes dubbed as pro-cure. Others view autism as a way of life rather than as a disease, and as such consider a cure unnecessary and resist efforts to find one^[1][2] or view it as unethical.^[3] They are sometimes dubbed anti-cure.

The anti-cure perspective is considered a fundamental value of the movement. It is the view that autism is not a disorder, but an alternate variation in brain wiring with its own benefits and drawbacks.^[1] The anti-cure perspective supports the model of autism that says that autism is an integral part of the autistic person's personality,^[1] and that autism is something that cannot be separated from the person. For this reason, some anti-cure autistics, such as Jim Sinclair and Michelle Dawson, reject person-first terminology and prefer to be referred to as "autistics" or "autistic people" instead of "people with autism" or "people who have autism", because "person with autism" implies that autism is something that can be removed from the person.^[4][1]

Jim Sinclair says that curing an autistic person is equivalent to causing the autistic person to cease to exist and be replaced with a different (non-autistic) person.^[5] Anti-cure autistics believe quirks and uniqueness of autistic individuals should be tolerated as the differences of any minority group should be tolerated.^[6] Autistics.org has responded to Kit Weintraub's wish to remove her son's autistic symptoms so that he will make friends by saying that when someone is bullied or ostracized for a quality, it is because of people who are intolerant and not the fault of people who are different.^[6] Anti-cure autistics view talk about visions for a future where autism has been eradicated as a wish for the end of their culture and way of being.^[5]

Some people within the autistic community hold the view that autism, as a valid and unique way of being, should be embraced and appreciated, not shunned or cured.^[1][7] They say they feel threatened by the growing search for a cure, as if society has little use for autistics. They argue that autism is a normal part of the diverse human condition and say the focus on a cure amounts to treating them as a medical problem.^[8] The autism rights movement says that efforts to cure autism should not be compared, for example, to curing cancer, rather to the antiquated notion of curing left-handedness.^[1]

When asked if society should change for people with autism or people with autism should change to fit in with society, Simon Baron-Cohen said it's a bit of both: people with autism are trying to fit in, but society should change to some extent. Educating teachers and other children at school could help children who have a hard time at school and are often bullied and teased.^[9] Baron-Cohen said:^[2]

“

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.

”

Parents with the perspective of autism as a disorder (which is sometimes 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.^[10][11] People with the pro-cure perspective have been disdainfully labeled "curebies."^[1]

[edit] People in the movement

[edit] Organized groups

Organized groups of the autism rights movement include the Autism Network International (ANI)—a self-advocacy organization founded in 1992 run for and by autistic people and which hosts an annual conference called Autreat—and Aspies For Freedom—an activist group founded by Amy and Gareth Nelson in 2004 which started Autistic Pride Day and protested against the Judge Rotenberg Educational Center.

Prominent websites include neurodiversity.com.^[1]

[edit] Individuals

• Amanda Baggs has written for Autistics.org, an anti-cure autism website. She was featured in an article on CNN in February 2007.^[12]
• Harvey Blume coined the term neurodiversity.^[13]
• Michelle Dawson is an autistic person and autism researcher who has challenged the ethics and science of applied behavior analysis and what she considers to be exclusion of autistic adults in the Autism Society of Canada.
• Ari Ne'eman founded the Autistic Self Advocacy Network and spearheaded a protest against an autism ad campaign by the NYU Child Study Center.^[14]
• Jim Sinclair is a co-founder of Autism Network International and author of the essay "Don't Mourn for Us," an anti-cure essay.^[5]

The essays of some individuals in the movement, including Amanda Baggs and Jim Sinclair, have been used as reading assignments in a class at the University of Wisconsin-Madison.^[15]

[edit] "Neurotypical" supporters

Although this movement is sometimes considered to consist only of autistic people,^{[citation needed]} there are some parents involved in the movement.^[6] Morton Ann Gernsbacher, who is a parent of an autistic child and a professor of psychology, said that autistics need acceptance and not a cure and has expressed opposition to the view of autism as a disorder.^[16] Estee Klar-Wolfond, the mother of an autistic son, founded The Autism Acceptance Project in support of autistic people.^[17] Autistics.org claims that parents can be the movement's strongest allies.^[6][18] In addition, some autistic people involved in the movement are also parents.^[19] Autism professionals Tony Attwood and Simon Baron-Cohen have sent supportive messages to the Aspies for Freedom organization.^[20][21]

[edit] Critics

Some of the most critical pro-cure advocates are non-autistic relatives of autistics, e.g. those represented by FAAAS, Families of Adults Affected by Asperger Syndrome.^[22]

[edit] History

Autism Network International was founded in 1992. Later in the mid-1990s the world wide web began to emerge and websites increased awareness about the neurodiversity perspective of autism.^[23] Autistics.org was founded in 1998 and started Internet campaigns in 2000.

Michelle Dawson's ethical challenges to ABA and the founding of Aspies for Freedom both occurred in 2004. In December 2004, Amy Harmon published an article in the New York Times titled "How about not curing us? Some autistics are pleading" which covered the anti-cure perspective.^[1]

[edit] Issues

The movement embraces a number of issues and goals that range from challenging the way autistic people are treated by others to challenging the way autism is portrayed. Not all supporters of the movement have the same opinions about the issues and there is controversy about the issues from within the movement.

[edit] Autism treatment

Further information: Autism therapies

A controversial public conflict occurred between parents of children with autism and autistic adults when the Supreme Court of Canada ruled against families asking the government to pay for their children's applied behavior analysis (ABA) as a medical necessity. Michelle Dawson, a Canadian autistic, had submitted testimony questioning the ethics of ABA. Her position angered many parents fighting to get government and insurance company benefits for their children.^[1][7]

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.^[1]

Michelle Dawson testified in Auton v. British Columbia and was cited in the Supreme Court of Canada's ruling in the case.^[1] Michelle Dawson has received heated criticism from some parents of autistic children because of her criticism of applied behavior analysis and her involvement in Auton v. British Columbia.^[24][23] These critics^[clarify] say ABA has been scientifically proven to be effective and 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.^[1] 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.^[25]

Bobby Newman said in an issue of the Schafer Autism Report that he believes that those without basic skills of self-care would not want those who are capable of communication to speak on their behalf.^[26] Baggs, who has been published at Autistics.org, responded to Bobby Newman's argument by saying that she was once in the situation Newman describes and would have wanted activists to stop her from receiving treatment she felt was harmful.^[27] A parent named Estee Klar-Wolfond has expressed concern that her son will be forced into ABA programs where he will not benefit.^[24]

[edit] 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.^[1] 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.^[28] However, the genetics of autism have proven to be extremely complex.^[29] In any case, the Autistic Genocide Clock was started in response to this, which counts down to 10 years after Buxbaum made this announcement.^[30] 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.^[31]

Some people lament that professionals, such as social workers, may discourage autistics from having children.^[8] Some are concerned that the "ultimate cure will be a genetic test to prevent autistic children from being born"^[1] and that most fetuses with autism would be aborted if prenatal tests for autism are developed.^[2]

[edit] 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.^[32] Autistic children have also been described as being held hostage to a psychiatric disorder.^[33] Others have used the term 'mad child disease' to describe autism,^[34][35] which some autistic individuals and their parents have found highly offensive.^[36] 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.^[24] 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.^[33] Autistic rights activists also reject terming the reported increase in the autistic population as an 'epidemic' since the word implies autism is a disease.^[37]

Attempts have also been made to place a figure on the financial 'cost' of autism, addressed to both scholarly^[38] and popular audiences.^[39] These efforts have been criticized by some autism rights advocates, comparing it to the now-reviled eugenics movement in the early 20th century.^[40] Michelle Dawson has pointed out that no effort has been made to examine the cost of 'eliminating the disease' to autistic individuals,^[41] and she, as well as others, have also pointed out the valuable contributions autistic individuals can, and have made to society.^[41][42]

[edit] Autistic traits

Some autistic rights activists believe some characteristics described as being autistic traits are actually misconceptions.^[43] Michelle Dawson has disputed the belief that 75% of autistic people have low intelligence.^[24] 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.^[44] As of 2006, some people have begun to subscribe to the belief that autistic people lack a "theory of mind"; that is, they are unaware that others do not necessarily think or know the same things that they(autistics) do. 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".^[45][46]

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".^[47] He notes, for example, that a common tactic is denying that "the persons mounting the challenge are really members of the group to which they claim membership". Sinclair illustrates the point with an analogy regarding Frederick Douglass, a nineteenth-century African American who became a well-known abolitionist writer and speaker. Douglass was after some time suspected of being an impostor because he was well spoken and educated, so he did not fit the stereotype of black slaves.

The controversy has erupted on autism e-mail lists, where some parents are referred to derogatorily as "curebies" and "portrayed as slaves to conformity, so anxious for their children to appear normal that they cannot respect their way of communicating".^[1] 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.^[48]

[edit] Functioning labels

Some autistic activists say it is not easy to distinguish between high and low functioning.^[1] Some autistic individuals, in contrast, are supportive of the distinction between the low and high functioning labels as well as autism and Asperger's, and believe it is important in helping individuals get proper consultation and treatment.^[49]

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^[1] and that they have the ability to communicate. Lenny Schafer, for example, argues that those in the movement are Asperger autistics, as opposed to Kanner autistics. He says that if they would change every use of autism to read Asperger syndrome the movement might "make sense".^[1] They^[clarify] argue that low functioning autistic people have much less ability to communicate, but that the movement's activists clearly have the ability to write eloquently, and they believe that those who have less ability to communicate are likely to want or need very different things from those who can communicate more readily. This is re-iterated by Sue Rubin, diagnosed with autism, when she states, 'High-functioning people speak and low-functioning people don't...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."^[49]

Most of the autistic individuals in autism rights movements are on the "high-functioning" end of the spectrum;^{[citation needed]} many autistic individuals who have not been treated have low social, verbal, and full-scale IQ's and may be classified as mentally retarded.^{[citation needed]} With early detection and intervention, these low-functioning individuals have a greater chance of social integration.^[50]

One study said that approximately 78% of spectrum sufferers are high functioning.^[51] The research indicated that functional level is not a strong indicator of support services needed—in other words, being high functioning or even very high functioning did not ensure independent living. Two percent of low functioning autistics were found to have stable full-time paid employment, and only 12 percent of high functioning autistics have stable full-time paid employment. Rates of independent living amongst high functioning autistics is only four percent, with a further 13 percent able to live on their own with professional or family support. The impact on caregivers of low functioning autists is enormous, but the impact on caregivers of high functioning autists is, contrary to popular belief, almost as large.

Activists in the movement have responded to criticisms that say they are high functioning or Asperger's by saying that some of them have been called low functioning as children by professionals, some of them can write but have no oral speech, and that some of them have periods of time where any form of communication is impossible.^{[citation needed]} They also say it is not true that all autistic advocates are diagnosed with Asperger's syndrome and that some of the most outspoken ones are autistic.^{[citation needed]} When critics claim that the people in the movement are Asperger's and not autistic, the people in the autism rights movement see this as an attempt to diagnose them via the Internet.^[6]

Michelle Dawson says that some parents tell her that she is different from their children because she can express herself and live independently and their children cannot. Michelle Dawson responds by saying that she could not live independently when she was a child either.^[23] Phil Schwarz has responded to claims that the autistic advocates are higher functioning than autistic children by saying it is not always reasonable to compare the abilities of an autistic child with those of an autistic adult.^[18]

Some autistic authors such as Amanda Baggs have claimed that this is not always the case that anti-cure autistics have mild difficulties.^[52] 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.^[52]

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.^[6]

In a 2001 New Scientist interview about Asperger syndrome, Simon Baron-Cohen (an autism researcher) said that Asperger's differs from classic autism in terms of disability because, from the perspective of the person with AS, they may be different, but not disabled, while classic autism causes more difficulties.

Some people also say the activists opposed to a cure are typically "high functioning" or have Asperger's syndrome.^[1][7] 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 with autism are just "trying to get through the day".^[49] Autistic activists reply that they represent both high- and low-functioning autism, which are not easily distinguished.^[1][7]

[edit] Status as a social minority group

Amy Nelson of Aspies For Freedom wrote a proposal in 2004 that the autistic community are a social minority group and therefore should be considered as such by the United Nations.^[53] The letter expresses concern about the possibility that if a cure were found, autistic people may be forced to use it.^[53] In February 2007 a petition for UK citizens to Downing street was launched by Aspies For Freedom, expressing the need for minority group status.^[54]

[edit] Diversity in autism

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.^[55]

[edit] Notes

[edit] External links

• 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
• Autreach - a network of UK Autism disabled people's organisations
• Aspergian Rights - official home of the aspergian rights movement

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