Information on the Autistic Rights Movement,  alternative views on Autism Spectrum Disorders
 
 

THE AUTISM RIGHTS MOVEMENT

The Autism rights movement (which has also been called autistic self-advocacy movement and autistic liberation movement) was started by adult autistic individuals in order to advocate and demand tolerance for what they refer to as neurodiversity. The movement is 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-neurodiversity views.

 

Autism as just a different way of being

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 of the goals of the movement are to challenge the ethics and science of interventions such as Applied Behavior Analysis (ABA) and psychiatric hospitals; to include autistic adults in Autism organizations and provide services for autistic adults; and to challenge descriptions of Autism that they consider to be pitiful, insulting, and/or incorrect.

 

Aspies For Freedom

Aspies For Freedom is a group which is at the forefront of the Autism rights movement. The term "Aspies" refers to high-functioning autistics, or those with Asperger's Syndrome. The aim of Aspies For Freedom (AFF) is to educate the public that Autism is not always a disability, and that there are advantages as well as disadvantages. The group also campaigns against what is sees as abusive forms of therapy, and against the idea of a cure for Autism. The AFF hopes to have autistic people recognized as a minority status group.

 

The usage of the infinity symbol as a representation of Autism, started by Aspies For Freedom in June 2004, was a reaction to the negative connotations associated with the jigsaw symbol commonly used by parents to represent Autism. The jigsaw symbol was seen by much of the autistic community as an insulting reference to the fact that autistics can appear puzzling, in need of "fitting in" with society, or as having "a bit missing". It was felt that the infinity symbol better represents autistics by representing logic, persistence, perseverance, and unity of form.

 

The website of Aspies For Freedom contains other resources for autistic people more oriented towards personal experiences of an autistic, including: message forums, video programming, and a MediaWiki-based encyclopedia. The group also runs an IRC chat network for autistic people on chatAutism.com as online chatting is sometimes seen as essential to some with Autism as a main source of social communication. Offline branches of Aspies For Freedom include groups in Australia and Wales for those who wish to meet in real life.

 

Others in the movement

Organized groups of the movement include: Autism Network International (ANI), which is 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.

 

A number of individuals have played an important role in this movement. Amanda Baggs has written for autistics.org, one of the most well known anti-cure Autism websites. She was featured in an article on CNN in February, 2007.

 

Michelle Dawson is an autistic person and Autism researcher. She 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.

 

Jasmine O'Neill is an author who has argued for a pro-neurodiversity view.

Joe Mele: former member of Aspies for Freedom who held an anti-cure protest that was cited by the media.

 

Kassiane Sibley is an Autism rights blogger operating under the pen name Rett Devil.

Jim Sinclair is a co-founder of Autism Network International and author of the essay Don't Mourn for Us, a widely distributed anti-cure essay.

Donna Williams has endorsed the Aspies For Freedom organization.

 

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.

 

Some websites play a role in the movement. Although there are a number of personal websites that express pro-neurodiversity and/or anti-cure views, some websites are more well known than others. The more well known or "prominent" websites include: Autistics. Org, founded in December 1998 and started a number of Internet campaigns; and neurodiversity.com is a well known website in the movement and it has replied to some of the movement's critics.

 

Computers for communication

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. Even some mute autistics, such as Jasmine O'Neill, still write very well and present a case for societal acceptance of Autism. These autistics do not desire a cure, but rather to be given opportunities to use their unique skills and perceptions in useful ways.

 

Adult issues

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 (such as respite).

 

Accuracy of information about autistic adults

Autistic rights activists believe many people considered Autism experts publish inaccurate information about what happens to autistic children when they become adults. They claim that while many autistic adults in the Autism rights movement have significant difficulties in life, some of the pessimistic predictions that had been given to them when they were children did not come true. Because they consider these inaccurate predictions to be false, autistic rights activists believe what they consider to be pessimistic statements from Autism experts of today are also false.

 

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/obtaining a proper diagnosis. 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. A deep analysis of these types of journals can show a misaligned or continually changing view of Autism from non-autistics, which is often based on simpler understanding by non-autistics, and not a clear understanding for autistics.

 

A common reason for autistic adults to seek a diagnosis is to obtain services and/or accommodation for difficulties associated with Autism. Some people, 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 autism 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

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. The website Getting the Truth Out is one website that argues that there are misconceptions of autistic traits. The website also opposes the way Autism is allegedly perceived by society.

 

As of 2006, some people have begun to subscribe to Simon Baron-Cohen's theory that autistic people lack a "theory of other minds"; that is, autistic people are unaware that other people do not necessarily think or know the same things that they do. However, Baron-Cohen's theory has not been proven to be true of all autistics. 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".

 

It is reported that 75% to 85% of autistic people are mentally retarded. Some people believe autistics are incorrectly diagnosed with intellectual disability because of lack of an ability to communicate what they know, and due to fundamental flaws in intelligence testing. According to the original definition by Aaron Rosanoff (as a segment of temperament in his "theory of personality", published circa 1915), it is also a factor that it might be possible to be strongly autistic, physically normal, and highly intelligent, thus escaping diagnosis as children, and consequently not appearing in current statistics. Gifted children sometimes have autistic traits, which may suggest an association.

 

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 humor, but just one that a neurotypical cannot relate to - just as the autistic cannot relate to the neurotypical's humor. 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. This may have contributed to the view that people with Autism are emotionless, especially to those who may not wish to look deeper.

 

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. Autistic adults such as Jerry Alter and Jessy Park report being greatly amused by concepts "such as eating roads or flowers are growing on a telephone", which may be seen as reminiscent of Monty Python-type British absurd humor.

 

 

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.

 

Criticism of the Autism Rights Movement

Critics of the movement argue that the autism spectrum people in the movement are high functioning and/or Asperger's 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 then 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. (Part of the difficulty autistic activists have with such statements is that they seem to contain faulty logic; many autistics who need help with self-care are nonetheless capable of communication.)

 

The website Autism: A Debilitating Disease, Not a Culture argues that the movement's goals of understanding autistic people and changing the world to accommodate them is not enough because understanding will not end difficulties such as self-injury in autistic people and will not teach them to communicate. The website also argues that only the opinions of autism professionals are valid, and not the opinion of autistic activists, because they argue that it is those who are experts in a field who can study a disorder, not those who have the disorder.

 

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 believe 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.

However, it is generally understood among the medical profession that whilst some symptoms of autism can be treated with drugs (e.g. aggression), Autism itself cannot be treated with drugs.

 

Some critics feel that because a lack of empathy is considered an autistic trait, the autistic traits of the activists of the movement cause them to lack empathy towards parents.

 

Responses from the movement

The autism rights movement has responded to its critics. The owners of the website 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.

 

A. M. 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 defense 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.

 

In an article titled History of ANI, 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.

 

A.M. Baggs who has been published in the Autism Information Library 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.

 

Some claim that autistic activists cannot claim expertise in Autism. Furthermore, some people consider autistic advocates such as Michelle Dawson to be, in fact, experts in Autism and some autistic people have degrees in psychology. Some argue that given the perseverative traits of many autistics, it is possible that some of them have acquired expert-level knowledge in the area.

 

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 A.M. 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.

 

Click here to read the fact sheet on Community, Politics & Culture of Autism.

 

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This autism fact sheet is licensed under the GNU Free Documentation. It is derivative of an Autism and Asperger's syndrome-related articles at http://en.wikipedia.org

   
   
Many in the autism rights movement prefer to not be seen as having an Autism Spectrum Disorder, but as simply being different, especially groups such as Aspies for Freedom