Autism rights movement
This article or section has multiple issues:
|Autism rights movement|
|Aspies For Freedom|
|Autism Network International|
|Autistic Pride Day|
|Sociological and cultural aspects|
|Neurodiversity · Neurotypical|
|Michelle Dawson · Temple Grandin|
|Jerry Newport · Amanda Baggs|
|Jim Sinclair · Donna Williams|
The autism rights movement (also called the autistic self-advocacy movement and the autistic liberation movement) was started by adult autistic individuals to advocate and demand tolerance for what they refer to as neurodiversity. The movement is also supported by some "neurotypicals" including parents of autistic children. The movement is controversial and has been criticized by some parents of autistic children who disagree with its anti-cure and pro-neurodivergence views.
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 autistics do not desire a cure, but rather to be given opportunities to use their autistic strengths to to cope with their autistic difficulties .
The basis of the movement is the view that autism is not a disorder but simply a different way of being. They believe a cure for autism would destroy the original personality of the autistic person in a misguided attempt to replace them with a different (neurotypical) person. Some actions of people involved in the movement include challenging the ethics of applied behavioral analysis (ABA) and admission to psychiatric hospitals; arguing to include autistic adults in autism organizations and provide services for autistic adults; and to challenging descriptions of autism that they consider to be pitiful, insulting, and/or incorrect.
- 1 Anti-cure perspective
- 2 People in the movement
- 3 History
- 4 Issues
- 5 Activist methods and activities
- 6 Controversy
- 7 Notes
- 8 External links
The anti-cure perspective is considered a fundamental value of the movement: the view that autism is not a disorder, but a healthy variation in neurological hard-wiring. The anti-cure perspective supports the model of autism that says that autism is a fundamental part of who the autistic person is 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.
Autistics with this perspective oppose the idea of a cure for autism because they see it as destroying the original personality of the autistic individual, forcing them to imitate neurotypical behavior (which they believe is unnatural to an autistic person), simply to make mainstream society feel less threatened by the presence of people who are different. Anti-cure autistics believe quirks and uniqueness of autistic individuals should be tolerated as the differences of any minority group should be tolerated. 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.
Anti-cure autistics say they wish they had fewer difficulties in life, and that they find some aspects of autism (like sensory issues) painful, but they do not want to have to sacrifice their personalities, values, and basic identities in order to make life easier. Anti-cure autistics ask that society become more tolerant and accommodating instead of pushing a cure. Anti-cure autistics say they are in favor of helping make the lives of autistic people easier, but they prefer the word "education" over "treatment", and they support programs that respect the individuality of the autistic person and only try to teach them things instead of change them, and they think that autism treatments should focus on giving autistics the means to overcome the limitations posed by autism, rather than curing it.
The anti-cure perspective is related to much of the controversy of the movement. Some parents of autistic children see autism as something that gives their children great difficulty in life and therefore see autism as a disorder. Parents with this perspective (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. People with the pro-cure perspective have been disdainfully labeled "curebies."
People in the movement
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. Some smaller regional groups of autistic advocates have also been founded, such as the Asperger Adults of Greater Washington.
- Amanda Baggs has written for Autistics.org, an anti-cure autism website. She was featured in an article on CNN in February 2007.
- 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.
- Jim Sinclair is a co-founder of Autism Network International and author of the essay "Don't Mourn for Us," an anti-cure essay.
- Harvey Blume coined the term neurodiversity.
- Donna Williams has endorsed the Aspies For Freedom organization.
Although there are a number of personal websites that express pro-neurodiversity or anti-cure views, some websites are more well known than others. The prominent websites include autistics.org, founded in 1998, and neurodiversity.com.}
Although this movement is sometimes considered to consist only of autistic people, there are some parents involved in the movement. 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. Estee Klar-Wolfond, the mother of an autistic son, founded The Autism Acceptance Project in support of autistic people. Autistics.org claims that parents can be the movement's strongest allies. In addition, some autistic people involved in the movement are also parents.
Shortly after Autism Network International was founded in 1993, the world wide web began to emerge and autistic people began websites that expressed their views of autism. 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 was 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.
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.
Opposition to eliminating autism
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Some people[attribution needed] have the goal of eliminating autism completely; 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). 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. The genetics of autism have proven to be extremely complex, however, to the relief of some autistic self-advocates. 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.
View of autism as a disease
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. Others have used the term 'mad child disease' to describe autism, which some autistic individuals and their parents have found highly offensive. 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.
- Adult inclusion
Some in the autistic rights movement believe the status quo of autism issues focuses too much on children and parents, and tends to exclude autistic adults. They point to various autism organizations like Autism Society of America that have a child as a logo and they feel parents have more power than autistic adults in autism organizations. Michelle Dawson believes that the Autism Society of Canada excludes autistic adults. Autistic people oppose this because they feel autistics, not non-autistic parents, should be the primary focus of autism organizations. They also believe there are more services for autistic children and their parents than for autistic adults, and some advocates of adult inclusion believe that some services and resources for autistic children are actually more for the parents.
- Adult diagnosis
Autistic adults claim that the definition afforded in an autism diagnosis is designed for children and not for adults, which makes the parameters unworkable and difficult in maintaining or obtaining a proper diagnosis.Template:Dubious Because people change as they grow to adulthood, they may no longer fit the official model of an autistic individual. In addition, autism diagnosis may be taken less seriously when it is made in for an adult rather than for a child, the idea being that if a person were really autistic, it would have been noticed in childhood. Some autistic adults respond to this by citing the relative ignorance about autism on the part of professionals and the general public, even ten years ago, compared to what is known in the present, and that autistic children were often misdiagnosed as learning-disabled, lazy, or as having a thought disorder. Even in the 1980s, professionals specializing in autism contributed to a peer-reviewed journal called the Journal of Autism and Childhood Schizophrenia. Template:Original research
A common reason for autistic adults to seek a diagnosis is to obtain services and/or accommodation for difficulties associated with autism. Some, however, only seek a diagnosis for the sake of a personal identity as a confirmation of why they feel "different" in a neurotypical society, or out of simple curiosity. Sometimes autistic adults find a self-diagnosis to be sufficient for this purpose (though some prefer an "official" diagnosis for credible confirmation). Those who have diagnosed themselves as autistic would not necessarily be seen as autistic by doctors and may instead be suffering from Medical Textbook Syndrome (reading about a condition and thinking they have it), or they may have some truly insightful views as people who can be categorized within the lesser known parts of the autistic spectrum.
- Services and accommodation
The autism rights movement desires more services and accommodations for autistic adults. They also desire autistic adults to have equal opportunity in employment and in education.
Misconceptions of autistic traits
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Some autistic rights activists believe some characteristics described as being autistic traits are actually misconceptions and desire to educate the population about what they believe are the real reasons these alleged misconceptions occur.
Michelle Dawson has disputed the belief that 75% of autistic people have low intelligence .
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 suggested that they are only perceived to lack a theory of mind because autistic people do not necessarily communicate with others in the same ways people who are not autistic do. This would prevent others' knowing whether autistics have a theory of mind or not. Some autistics who have difficulty with sensory input might be less likely to be able to interpret other people's thoughts and knowledge through observation. Some autistics have observed 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".
Although some people believe autistic people have no emotions and no sense of humor (despite the existence of comedians with the condition), some autistic people reject this and report that they do experience a range of emotions, and indeed have a tremendous sense of humour, but just one that a neurotypical cannot relate to—just as the autistic cannot relate to the neurotypical's humour. This again comes down to a majority perception of 'the norm', when there may not be one. Autistics with Asperger's Syndrome may actually be more emotionally sensitive than a neurotypical, but because of different expressions of emotion, they often come across as rude, abrupt and emotionless. The perception that autistics are emotionless may come from the fact that autistics may be more likely to keep their emotions to themselves—for example, not laughing when they find something funny. Autistics may also have different emotional reactions from what people without autism may expect. Noting a different reaction than they were expecting may prompt people without autism to perceive a general lack of emotion in autistic people. Autistics may also be amused by things that non-autistics would not find funny, such as absurd, Monty Python-type humor such as eating roads or flowers growing on a telephone.
The autistic rights movement has contributed to controversies about functioning labels and the distinction between autism and Asperger's in the autism spectrum. In particular, some autistic rights activists are concerned with the functioning labels and the autism/Asperger's distinction making it more difficult to get services for difficulties associated with autism, and they believe the terms such as 'high-functioning' and 'low-functioning' are used as an excuse for their opponents to ignore the viewpoints they do not like. 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's, and believe it is important in helping individuals get proper consultation and treatment.
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. This would give certain protection against the forcible use of cures and therapies, either now or in the future. They say that if the fact that people on the autistic spectrum are different in their own right was accepted worldwide, instead of their being regarded as simply a faulty version of "normal" people, it would provide greater freedom to the whole community. Without the stigma or pressure to communicate in the same way as neurotypicals, autistics would be enabled to form social bonds in ways that best suit them. It is sometimes the case that typing or signing is easier than talking for autistics, and there is a fairly large autistic community on the Internet, many of whom are socially isolated locally.
The Nelson proposal that the Autistic community be classified as a minority group by the United Nations has divided the autistic community politically. Some autistics believe it is self-defeating to receive special status when they are capable of achieving things for themselves as successfully as people without autism. Some autistics also recognize that governmentally-declared minority groups are seen with disdain and opposition by those outside their group, and thus subject to more negativity than those who are not declared a minority by the power of government.
Activist methods and activities
In the early 2000s, activist campaigns started, mostly over the Internet.
- In 2004, the Petition to Defend the Dignity of Autistic Citizens was started to protest the use of insults to describe autism (such as "mad child disease").
- In 2004, Amy Nelson of Aspies For Freedom wrote a proposal that the autistic community are a social minority group and therefore should be considered as such by the United Nations.
- In February 2007 a petition for UK citizens to Downing street was launched by Aspies For Freedom, expressing the need for minority group status.
The movement has been criticized by autism professionals and parents of autistic children who believe the goals of the movement will not help autistic children. There are some critics of the movement who still support some of the movement's goals despite opposing other goals.
Critics of the movement argue that the autistic spectrum people in the movement have high-functioning autism or Asperger syndrome 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". They 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. 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 . 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,"
Some critics of the movement believe Michelle Dawson played an important role in Auton v. British Columbia and is responsible for Canadian children not receiving applied behavioral analysis, which is considered an important therapy by the people who make this criticism. These critics say ABA has been scientifically proven to be effective and gives autistic children the best chance of success in adulthood. 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.
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 . Autistic advocates counter that the behavior of the pro-cure movement shows a striking lack of empathy for autistics. 
Responses from the movement
The owners of Autistics.org say that they receive e-mails from parents of autistic children in which parents claim their own children are different and have more difficulties than them. The people at Autistics.org argue that when the parents describe their children's difficulties, they are describing the children to have difficulties that range from very similar to their own difficulties that they had as children, to very similar to their current difficulties as adults. Autistics.org also says that their claims that they don't want a cure, see autism as a part of who they are, and don't want attempts at help that may actually be harmful are wrongly perceived by their critics as not wanting help with anything and living under entirely positive circumstances.
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. 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. 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.
Amanda Baggs 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 examples of autistic people who were denied services because they have IQs above 70. Some people are also irritated by the perception created by Rain Man that all autistics have savant abilities, although the reality is that the psychiatrist in the film said that Dustin Hoffman's character Raymond Babbitt was very high functioning, unlike many other autistics, who are unable to speak. A countercriticism of this Rain Man defence is that the film was clearly made at a time when understanding of autism was less developed, and is not reflective of the reality. Raymond Babbitt is not considered high-functioning by people in the autism rights movement, who point out that Albert Einstein may have met the diagnostic criteria for high-functioning autism.
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". 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. Douglass also differs from majority black opinion, in that he supported the idea that blacks should be left to sink or swim just like everybody else.
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.
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.
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.
Some autistic authors such as Amanda Baggs have claimed that this is not always the case that anti-cure autistics have mild difficulties. A common complaint is that anti-cure advocates are clearly able to articulate complex opinions in writing, which is seen by some parents as inconsistent with a diagnosis of autism. Autism rights movement members wonder why such parents rule out the possibility that their children will be able to do the same later in life. Autistics who oppose a cure say they may experience extreme difficulties on a daily basis, and that they oppose being cured despite these difficulties because they believe autism is a fundamental part of who they are.
Further responses of the movement can be summarized as follows:
- The critics' position is tautological: They claim autistic persons cannot communicate and therefore don't have a voice. If they learn to communicate, they are no longer autistic by definition, and therefore are not allowed to speak on behalf of autistics.
- The prognosis of autism is notoriously unpredictable. Autistic activists ask why parents should assume that their 3- or 4-year-old child will behave the same way at age 30. They have also argued there are no indications that the recent increase in reported cases of autism is anything more than mass hysteria, and that all the "miracle cures" (which are not scientifically validated) are all but mass delusion.
- Being able to communicate well in writing is not inconsistent with a diagnosis of autism.
- Autism does not disappear the moment a person learns to communicate. Successfully teaching to communicate is not the same as "curing" autism.
- Autism rights advocates believe parents should take into account the self-esteem of their autistic children. Activists ask, is it better to teach these children that they have a neurological disease requiring intensive behavioral training to correct, or that they have unique and special neurology they should cherish and accept for what it is?
- Some of the critics' own children have apparently learned to communicate already, so their position is confusing because they argue that the writing abilities of autistic activists is evidence that they are fundamentally higher functioning than the children of the critics.
Early origins and continuation of the debate
The debate is ongoing and critics have responded to the autism rights movement's responses to their original criticisms, and the autism rights movement in turn has responded to those.
The autism rights movement and its debates were collaborated online due much in part to usenet's alt.support.autism group (groups.google.com/group/alt.support.autism) which had autistics and people without autism on various sides of rights, cure and treatment issues. Due to the lack of moderation and what they perceive to be the abuse of several autistics on that forum by possible cranks, many have taken up blogging in more moderated communities. Much of the current thought has evolved over time by discussions in these communities and groups. Over time, some internet meme has also resulted because of the autism rights movement, much of which is tongue in cheek criticism of the self-diagnosis issue.
Some of the debate continues offline as well. Autistics and people without autism of all ages participating in the autism rights movement may also be expressly excluded from their local autism organizations. Many have, however formed well-connected offline chapters to address the lack of this inclusion by some cure-oriented autism communities. Some groups, however, have been making efforts to include such families, groups and individuals in the movement to increase the level of communication and create mutual understanding.
Some of the most critical pro-cure advocates are non-autistic relatives of autistics, e.g. those represented by FAAAS, Families of Adults with Asperger Syndrome. Many such organizations have characterized those in the anti-cure movement as being mostly an adult with Asperger Syndrome phenomenon and object to the anti-cure message as a result of their own personal perspectives of living with autistic adults.
Disagreements within the movement
There are disagreements within the movement as well. Some autistics would prefer autism to be seen as a disability, meaning that it would have a status similar to blindness or deafness. Within this context, autism rights would fit within the broader movement of disability rights and autistic culture would be analogous to deaf culture. Those supporting this view are concerned that if autism was to be viewed as simply a way of being or as a non-disabled minority group (much like gay and lesbian persons), the needs some autistics have for aid and assistance would be overlooked.
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.
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