Autism rights movement
From Wikipedia, the free encyclopedia.
The autism rights movement was started by adult autistic individuals in order to advocate and demand tolerance for what they refer to as their neurodiversity. The movement is supported by some neurotypicals including parents of autistic children. Most parents of young children diagnosed autistic appear to be against the movement's views, however.
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.
The position this movement considers most fundamental is the position that autism is not a disorder at all but simply a different way of being. They believe a cure for autism would destroy the original personality of the autistic person and replace them with a different (neurotypical) person. This movement has made ethical challenges to applied behavioral analysis (ABA) and psychiatric hospitals. The movement wants to include autistic adults in autism societies and provide services for autistic adults. They also wish to challenge descriptions of autism that they consider to be pitiful, insulting, and/or incorrect.
Within the movement there can be disagreements. Some autistics would prefer autism to be seen as a disability instead of a disease, meaning that it would have a status similar to blindness or deafness. The concern is that calling for autism to be viewed as simply a way of being or as a minority group (much like gay and lesbian persons) would take away from the alleged needs some autistics have for aid and assistance.
It should be noted that "autism rights movement" is not the official name of the movement. The movement has no official name. Other names such as autistic self-advocacy movement [1] have also been used.
The anti-cure perspective
Some autistics believe autism is not a disorder at all, but simply a variation in neurological hard-wiring. They believe that autism is a fundamental part of who they are and that autism is something that cannot be separated from the person. For this reason, they prefer the word "autistics" or "autistic person" instead of "person with autism" or "person who has autism", because "person with autism" implies that autism is something that can be removed from the person [2]. 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 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 [3]. When people talk about visions for a future where autism has been eradicated, anti-cure autistics usually see this as a wish for the end of their culture and way of being [4].
The most quoted person with this perspective is Jim Sinclair, who has written an article titled "Don't Mourn for Us" which has been widely distributed over the Internet. Websites such as autistics.org, Graphic Truth and Aspies For Freedom also present this view.
Autistics who oppose the idea of a cure are often presumed to have only very mild difficulties [5]. As several autistic authors have pointed out, this is not always the case and it is not always reasonable to compare the abilities of an autistic child with those of an autistic adult. The most common complaint is that anti-cure advocates are clearly able to articulate complex opinions in writing, which is seen by many parents as inconsistent with a diagnosis of autism. It is unclear 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 may experience extreme difficulties on a daily basis. They simply believe autism is a fundamental part of who they are. Anti-cure autistics usually do wish they had fewer difficulties in life, and they do find some aspects of autism (like sensory issues) painful, but they do not want to have to sacrifice giving up their personalities, values, and basic identities in order to make life easier [6] [7].
Anti-cure autistics ask that society become more tolerant and accommodating instead of pushing a cure.
Anti-cure autistics 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.
Role of parents in the movement
Although this movement is sometimes quoted as consisting only of autistic people, there are actually some parents involved in the movement [8]. For example, the website Neurodiversity.com is part of the autistic rights movement and is run by neurotypical parents of an autistic child. These parents say they value their children's autism as part of their uniqueness and individuality [9]. They still wish to help their children but wish to do so without the desire for a cure. Autistic Autism rights activists wish to attract more parents to the movement and strongly value their parent allies[10]. In addition, some autistic people involved in the movement are also parents [11].
Ethical challenges to autism treatment
- For more details on this topic, see ethical challenges to autism treatment.
There are many programs available intended as treatment for autism. However, autistic rights activists feel these treatments do not actually help autistic people but instead harm them. In particular, applied behavioral analysis (ABA), mental institutions, and drug therapy have been challenged. Michelle Dawson is one such person who has challenged ABA in Canada's supreme court in 2004.
Adult issues
Adult inclusion
Many 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 that have a child as a logo and parents having more power than autistic adults in autism organizations. 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 a lot more services for autistic children and their parents than for autistic adults, and some advocates of adult inclusion believe that the services and resources that are claimed to be for autistic children are really just for the parents (such as respite).
Accuracy of information about autistic adults
Autistic rights activists believe many people considered autism experts publish false information about what happens to autistic children when they become adults. They claim that while some autistic adults in the autism rights movement have significant difficulties in life, many of the pessimistic predictions that had been given to them when they were children did not come true. Because of this, autistic rights activists believe pessimistic (from their point of view) things autism experts are saying to the parents of autistic children 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 adults are different than they were as children, they no longer fit the model of an autistic individual. In addition, autism diagnosis is sometimes taken less seriously when it is made in adulthood rather than childhood, because some people claim if autism were "severe" it would have been noticed in childhood. Some autistic adults respond to this by claiming that when they were children there was much more ignorance about autism than there is in the present.
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. Sometimes autistic adults find a self-diagnosis to be sufficient for this purpose (even though some prefer to get an "official" diagnosis for a credible confirmation). Those who have diagnosed themselves as autistic would not necessarily be seen as autistic by doctors.
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.
Organized groups
There are several organized groups such as Autism Network International (ANI), which is a self-advocacy organization run for and by autistic people and which hosts an annual conference called Autreat; Autistics.org, founded in December 1998 and that started a number of Internet campaigns; and Aspies For Freedom, an activist group which started Autistic Pride Day and protested against the Judge Rotenburg Center.
Autism Awareness Campaign UK
The Autism Awareness Campaign UK was launched in 2000 by Ivan and Charika Corea in response to an autism diagnosis ascribed to their son, Charin. The Corea family campaigns on a range of issues in the United Kingdom, including autism and the labour market, autism and education, autism and minority ethnic communities, and other areas where they believe there is a shortfall in public-service provision. Additionally, they have lobbied for greater awareness of the condition and for independent research on the causes of autism.
The "Autism Awareness Campaign" of 2002 initiated debates in the Parliament of the UK as well as the Scottish Parliament. Additionally, a conference on autism was held at the King's Fund in London as well as a service for autism at St. Paul's Cathedral. The Coreas were nominated for the Beacon Prize in 2004 and received the Beacon Highly Commended Award Certificate for Leadership. Ivan Corea was also appointed a London 2012 Olympic bid Ambassador by Lord Sebastian Coe. [12]
Autism Awareness Campaign Sri Lanka
The Autism Awareness Campaign Sri Lanka was set up by Ivan and Charika Corea in 2003 to lobby for public services of health, education, specialist speech therapy and respite care for all people with autism and Asperger's Syndrome on the island. They say there are 30,000 autistic children in Sri Lanka, and that some are being kept at home, and that there are only a handful of schools which take in autistic children. Endorsers of the group include musician Desmond de Silva, who presented Vijaya Corea with a "Lifetime Achievement Award" at a concert in Bandaranaike Memorial International Hall and singer/songwriter Nimal Mendis [13].
Against an insulting view of autism
It is the opinion of autistic rights activists that many people present an insulting view of autism. One of the goals of the movement is to expose and challenge those claims they find offensive.
Some things autistic rights activists find offensive are (1) the comparison of autism to a national tragedy or fatal disease, (2) statements such as "autism is worse than cancer and 9/11 combined", and (3) claims that autism is a death sentence. Michelle Dawson has protested the statement "autism is worse than cancer in many ways because the person with autism has a normal lifespan" [14]. Even some pro-cure advocates believe some of these statements go too far.
Dr. Boyd Haley, chairman of the chemistry department at the University of Kentucky, recently termed autism "mad child disease" in speaking about children whose autism was apparently caused by mercury poisoning. This term offended some autistics as well as some parents of autistic children, and the "petition to defend the dignity of autistic citizens" was started by Neurodiversity.com in protest.
Autistic rights activists also reject terming the reported increase in the autistic population as an epidemic (see autism epidemic) since the word epidemic implies autism is a disease. The autistic epidemic idea is controversial in any case; anti-cure activists propose that the reported increase in autism may be due to the fact that more people are simply being diagnosed as autistic and that historically, more people went undiagnosed.
Some autistic adults find the puzzle piece ribbon offensive. A common reaction is "I'm not a puzzle, I'm a human being." Oddizms has created a rainbow moebius ring to symbol autism awareness and replace the puzzle piece ribbon.
Autistic rights activists find offensive a trend where people attempt to make people aware of autism by discussing how much money autistic people allegedly cost. These campaigns give the impression that autistics are a burden on tax payers and a waste of money, and activists compare this to arguments Nazis used to support Adolf Hitler's T-4 Euthanasia Program and also the American eugenics movement [15]. Plus these campaigns fail to account for the (arguably) valuable contributions the autistic phenotype has made towards the advancement of the human race.
Misconceptions of autistic traits
Autistic rights activists believe many characteristics described as being autistic traits are really only misconceptions [16] [17]. People in this movement desire to educate the population about what they believe are the real reasons these alleged misconceptions occur.
It is considered characteristic of autism for autistic people to lack a "theory of other minds", that is, for autistic people to be unaware that other people do not necessarily think or know the same things that they do. Many people feel that autistics are only perceived to lack a theory of mind because autistic people do not necessarily communicate with others in the same ways neurotypicals do. Not only would this prevent others' knowing whether autistics have a theory of mind or not, but lack of communication might make autistics less likely to have knowledge of other people's thoughts and knowledge. Autistics often believe neurotypicals are insensitive to their perspective and use this as evidence that neurotypicals lack theory of other minds [18] [19].
It is reported that 75% to 85% of autistic people are mentally retarded. Many people believe autistics are incorrectly diagnosed with mental retardation 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 is quite possible to be strongly autistic, physically normal, and highly intelligent, thus escaping diagnosis as children, and consequently not appearing in current statistics [20]. 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, there are those who challenge this by saying that autistic people have emotions and find things funny, but are more likely to keep their emotions to themselves or might not laugh when they do find something funny. Also, autistics may 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 are reminiscent of Monty Python-type British absurd humor.
Functioning labels
- For more details on this topic, see controversies about functioning labels in the autism spectrum.
The autistic rights movement has contributed to controversies about functioning labels in the autism spectrum. In particular, autistic rights activists are concerned with the functioning labels making it more difficult to get services for difficulties associated with autism, and they believe the terms are used as an excuse for their opponents to ignore the viewpoints they do not like.
Noteworthy events in the movement
- On December 20, 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. [21]
Status as a social minority group
It has been proposed 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 often the case that typing or signing is easier than talking for autistics, and there is a large autistic community on the internet, many of whom are socially isolated locally. The statement from the autistic community on recognition for minority status is on the Autistic community page.
Some claim that the proposal that the Autistic community be classified as a minority group by the United Nations has divided the autistic community. Many autistics believe it is self-defeating to receive special status when they are capable of achieving things for themselves as successfully as neurotypicals.
Speculation of possible famous autistic people
There has been speculation that well-known contemporary and historical people may have been autistic in some form [22]. Those who are most commonly discussed are Albert Einstein, Bill Gates, Isaac Newton, and Thomas Jefferson. In addition, there are rumors that Steven Spielberg is diagnosed. Although this is brought up in the autistic rights movement, it is controversial outside the autistic rights movement as well. Some people considered autism professionals and/or psychologists (such as Simon Baron-Cohen and Christopher Gillberg) have contributed to this speculation.
Arguments in favor
People who believe the assertions that many of these people are autistic claim that people had no knowledge of autism at the time these people were alive, so the fact that autistic people in that time period were undiagnosed does not mean they are not autistic; it simply means their autism was not known. The arguments for each alleged famous autistic person vary from person to person. People claim that that Albert Einstein (the most frequently quoted as alleged to be autistic) was a late speaker, was a loner as a child, and needed his wives to act as parents when he was an adult; factors people claim make him "obviously" (or at least stereotypically) autistic.
Arguments against
Some people claim these people only represent very mild cases. Also believe alleged famous autistics only have a few autistic traits but not enough for an autism diagnosis. Others claim it is simply not possible to diagnose the dead, so nothing can be said about speculation over historical figures. Some Einstein biographers such as Albert Einstein in the World Wide Web say that he actually did well in school, and the belief to the contrary is only a myth based on a difference in grading policy.
Motivations for speculation
This speculation may simply be an attempt to create role models for autistics and to show people that autistics can do constructive things and contribute to society. This issue is discussed by autistic rights activists often to convince people that it would be a loss to society if autism were cured. Others in the autistic rights movement, however, dislike this argument, because they feel autistics should be able to value their uniqueness without the desire for a cure even regardless of whether or not people like Einstein were not autistic.
Some autistics value their "being" regardless of what others think, or of how unique it is. They prefer to redress the current diversion from the original clinical meaning. Pointing out the immense contributions of scientists and inventors who might have been autistic may be an attempt of anti-cure advocates to change the viewpoints of pro-cure advocates.
Activist campaigns
In the early 2000s, activist campaigns started, mostly over the Internet.
- In April 2000, Autistics.org hosted an online counter-rally called "Hear Our Voices" to protest an autism rally in Washington, D.C. called "Hear Their Silence" that they disagreed with. [23] [24]
- In 2004, a Autistic Adults Picture Project was started in response to similar projects started by parents that only include pictures of children.
- In September 2004, the "Our Names are Autism Too" is a campaign that protested an article titled "My Name is Autism" that presented a view autistic activists found insulting.
- In October 2004, the Signatures of Intolerance campaign was started over controversy surrounding ABA in Canada.
- 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 Aspies for Freedom started a campaign against the use of electric shock devices on autistic children at the Judge Rotenberg Center in Massachusetts, USA. This is an ongoing campaign by Aspies For Freedom and will continue until the use of such devices is stopped. The campaigns involves raising public awareness of this activity at the Center, an e-mail campaign, and protests are planned.
- Aspergian Pride's Cure for Ignorance Campaign maintains and distributes an extensive directory of advocacy and resource links for the purpose of raising public awareness of the autism rights movement.
- In January 2005 Kathleen Seidel published Lenny Schafer's Inquisition in protest of Lenny Schafer's assertions that people capable of communication can't be considered autistic, and that the autism spectrum should be redefined to exclude Asperger's Syndrome.
- In February 2005 autistics.org started the "Autistics speak" campaign to protest NBC's website Autism Speaks because autistics.org believes NBC's "Autism speaks" is mostly non-autistic people claiming to speak on behalf of autistic people.
Notes
- ^ See also the development of this theory by Humm and Wadsworth, resulting in their Aptitude Gradient of 1935, described here: [25]. This was based on Rosanoff's definition of "autism" (etc.) which is also that which Hans Asperger (and, most probably, Leo Kanner?) clearly had in mind (when describing his subjects not as "autistic", but as having autistic pathology), but is now resolutely ignored by clinical experts (most notably by Lorna Wing, who seems to have been unaware of this when describing Asperger's Syndrome).
See also
- Specifically related to autism rights movement
- Autism in general
- Other
External links
Activism (organizations)
- Autistics.org - Resources by and for persons on the autistic spectrum
- Autism Network International A self-help and advocacy organization
- Autism National Committee Promotes the right to self-determination
- CIBRA--Children Injured by Restraints and Aversives An advocacy group of parents and others seeking to end physical abuse of autistics
- Autistic People against Neuroleptic Abuse An advocacy group that warns against dangerous and unnecessary medications
- The Kingdom of Laurentius Rex A site promoting positive action
- Autism Awareness Campaign Sri Lanka
- Autism-Ethnic-UK.tripod.com - 'Autism and the Ethnic Minority Community in the UK'
- LearningDisabilities.org.uk - 'Recognition for couple's autism efforts' (May 9, 2005)
- UKAutism.com - 'Autism Awareness Campaign UK: Campaigning for all people with Autism' (official website)
In general/ resources
- AS-IF Information, resource links, and links to discussion groups
- Jypsy's "Oops, Wrong Planet" site Autism information, advocacy, and a large collection of resource links
- Autism Assembly A coalition of members of the autistic community who seek acceptance for those on the autistic spectrum, who aim to educate about autism, and who are not seeking a cure for autism
- Institute for the Study of the Neurologically TypicalA parody of Autism research institutions, claiming to be finding a cure for people who aren't autistic.
