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The use of these terms is controversial. Some people believe that those who are described as high functioning -- those who can read, write, and speak -- are fundamentally and obviously higher functioning than those who are described as low functioning -- those who can't read or speak and may need constant care. (Not all nonverbal autistics are incapable of self-care.) Others believe that, like everyone, autistics vary greatly in their strengths and skills, so that a one-dimensional, "high" or "low" functioning level is too misleading. For example, many autistics have excellent written language skills but no oral language skills at all. Others may have high intelligence and no language difficulties, or many other combinations of abilities, but still need constant care or some form of supervision for other reasons. There are also autistics who have language skills some of the time but no language skills at other times. The use of these terms is controversial. Some people believe that those who are described as high functioning -- those who can read, write, and speak -- are fundamentally and obviously higher functioning than those who are described as low functioning -- those who can't read or speak and may need constant care. (Not all nonverbal autistics are incapable of self-care.) Others believe that, like everyone, autistics vary greatly in their strengths and skills, so that a one-dimensional, "high" or "low" functioning level is too misleading. For example, many autistics have excellent written language skills but no oral language skills at all. Others may have high intelligence and no language difficulties, or many other combinations of abilities, but still need constant care or some form of supervision for other reasons. There are also autistics who have language skills some of the time but no language skills at other times.

Some people believe the autism rights movement (especially the anti-cure perspective) might make some sense if it only included autistic people described as high functioning or Asperger's. Autism rights activists have responded to this by claiming it isn't easy to distinguish between high and low functioning and pointing out that some of them have been called low functioning.


===Political and Social Implications of the terms=== ===Political and Social Implications of the terms===

Revision as of 05:56, 21 December 2004

In the 1990s and 2000s, autistic adults started a movement to activate the rights of autistics. There are many issues and controversies of concern to this movement. The position considered most fundamental to this movement is the anti-cure perspective.

The anti-cure perspective

Many autistics believe autism is not a disorder at all, but simply a variation in neurological hardwiring. 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" instead of "person with 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 "normal" behavior (which is not normal to an autistic), 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. When people talk about visions for a future where autism has been eradicated, anti-cure autistics usually see this as a wish for the genocide of their culture and way of being.

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.

People who hear autistics opposing the idea of a cure have assumed it is because their difficulties are very mild. Autism rights activists responded to this by pointing out that the reason anti-cure autistics oppose a cure for autism is not because they are so high functioning that they do not need a cure. Autistics who oppose a cure experience extreme difficulties on a daily basis. They simply believe autism is a fundamental part of who they are. Anti-cure autistics, like anyone else, usually do wish they had less difficulties in life, but they don't want to have to sacrifice giving up their personalities, values, and basic identities in order to make life easier. Anti-cure autistics wish society would be more tolerant and accommodating instead of pushing a cure.

Role of parents in the movement

Although this movement is sometimes quoted as consisting only of autistic people, there are actually many parents involved in the movement. These parents value their children's autism as part of their uniqueness. They still wish to help their children wish to do so without the desire for a cure.

Ethical issues in applied behavior analysis (ABA)

People have made ethical challenges to a popular treatment method known as Applied Behavioral Analysis. Critics of ABA argue that ABA does not actually improve the skills of autistic people, but instead only teaches them to mimic neurotypical behavior without really understanding the meaning of the social cues they are using. ABA critics also argue that ABA teaches the autistic person to suppress natural and harmless stimulatory behavior (which is called "stimming" for short). There have also been claims that ABA only "works" because of barbaric adversives that often causes posttraumatic stress disorder later in life.

The Michelle Dawson controversy

One critic of ABA is Michelle Dawson, an autistic individual, self-trained autism researcher, and autistics' rights activist. Dawson published an article The Misbehaviour of Behaviourists in January 2004, challenging the ethical practices and claimed scientific effectiveness of ABA.

Dawson's article sparked heated controversy in April 2004. Two examples of Dawson's critics are Lenny Schafer, who published a series of articles In Defense of Behavioral Treatment for Autism in the Schafer Autism Report, and Kit Weintraub, who published an article A Mother's Perspective. Many of Dawson's critics are parents of autistic children who feel her suggestions neglect the difficulties their children face and ruin their chances of a normal life. They also believe that Michelle Dawson and her supporters are too different from their children, who have no language skills at all, while Dawson and her supporters can write long articles about their own perspective. However, some of them at the same time have their children writing articles and speeches (such as those depicted in the Schafer Autism Report) in support of their parents' positions, making the idea that language skills are the real difference between their children and autistic activists dubious.

Autistics who support Michelle Dawson quickly published their own rebuttals to Schafer and Weintraub's articles. Autistics.org published an article In Support of Michelle Dawson and Her Work, claiming that the articles from Dawson's critics do nothing more than attack Michelle Dawson personally and fail to address the points in her article. The article also claims, using examples from the personal lives of the authors, that those of Dawson's critics who claim that autistics who support Dawson's work are very different from their own autistic children are making false assumptions about the abilities of Dawson and her autistic supporters. Dawson's autistic supporters claim their critics are judging their functioning abilities purely on their writing abilities and point out that it is possible for autistics to have good written language skills, but poor oral language skills and difficulty with areas of social functioning and living skills that are not necessarily related to written language skills. Dawson's supporters also say, that when parents of autistic children claim they are much higher functioning than their children, and describe their children's difficulties to demonstrate this, that the children are being described to have more skills than they have.

Critics of ABA and supporters of Michelle Dawson also believe ABA-proponents need to distinguish between problems that really are problems and harmless behaviors that are only different.

Controversy over "limited ABA"

There is some controversy over ABA within the autism rights movement. There are some who see any ABA in any form a violation of an autistic person's uniqueness and individuality and potentially damaging to the autistic person's mental health. There are others who feel some forms of ABA can be helpful as long as there are no barbaric adversives and that it is done to teach skills instead of attempting to make autistics behave like neurotypicals.

Adult inclusion

Many in the autistics' rights movement believe the status quo of autism issues focuses too much on children and parents, and tends to disclude autistic adults. This can be easily seen from various autism organizations that have a child as a logo and parents having more power than autistic adults in autism organizations. Autistic adults find this insulting because they feel autistics, not 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.

Against an insulting view of autism

The puzzle piece ribbon is used by some autism societies. Many autistic adults find this ribbon offensive and insulting.



It is the opinion of many autism rights activists believe autism societies present an insulting view of autism. In particular, many autistic adults find the puzzle piece ribbon offensive. Other things autistics rights activists find offensive the comparison of autism to a national tragedy or fatal disease. Statements such as "autism is worse than cancer and 9/11 combined" are infuriating to autism rights activists.

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 many autistics as well as parents of autistic children, and the petition to defend the dignity of autistic citizens was started to protest this.

Autism rights activists also reject terming the reported increase in the autistic population as an "epidemic", since this implies autism is a disease. The "autism epidemic" idea is controversial in any case; anti-cure activists point out that the apparent increase in autism may be due to the fact that more people are being diagnosed or reported as autistic.

Misconceptions over autistic traits

Autism rights activists believe many characteristics described as being autistic traits are really only misconceptions. People in this movement desire to educate the population about what they believe are the real reasons these alleged misconceptions occur.

Theory of other minds

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 don't 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 don't 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.

Mental retardation

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.

Emotions and a sense of humor

Although many 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.

Functioning Labels

High and low functioning

The terms high functioning and low functioning are applied to people with an autism diagnosis. The actual disctinction is somewhat ambiguous. One common criteria is for high functioning to be used to describe those who have language skills and low functioning to be used to describe those who do not have language skills. Another common criteria is to describe those who score an IQ above 70-80 as being high functioning, and those who score an IQ below 70-80 as being low functioning.

The use of these terms is controversial. Some people believe that those who are described as high functioning -- those who can read, write, and speak -- are fundamentally and obviously higher functioning than those who are described as low functioning -- those who can't read or speak and may need constant care. (Not all nonverbal autistics are incapable of self-care.) Others believe that, like everyone, autistics vary greatly in their strengths and skills, so that a one-dimensional, "high" or "low" functioning level is too misleading. For example, many autistics have excellent written language skills but no oral language skills at all. Others may have high intelligence and no language difficulties, or many other combinations of abilities, but still need constant care or some form of supervision for other reasons. There are also autistics who have language skills some of the time but no language skills at other times.

Some people believe the autism rights movement (especially the anti-cure perspective) might make some sense if it only included autistic people described as high functioning or Asperger's. Autism rights activists have responded to this by claiming it isn't easy to distinguish between high and low functioning and pointing out that some of them have been called low functioning.

Political and Social Implications of the terms

While it's generally difficult for autistics of any kind of find services and accommodations which actually help them, persons with an Asperger's label often have more difficulty finding services and accomodation for difficulties associated with autism, than those with a "low functioning" label. Because people with Asperger syndrome can speak and often write well, many laymen and professionals still consider them to be not really autistic.

In addition, people see autistic adults doing things they don't believe children described as low functioning will ever be able to do and are offended and/or confused that they share a label with people they do not perceive as being disabled; they believe autism is strictly a disability and should be treated as such.

Autistic adults described as high functioning have responded to this by saying a "high functioning" label or the ability to speak and write doesn't mean their difficulties are mild. Autism is often called the "invisible disability" because the difficulties are not obvious and difficult for neurotypicals without personal experience to understand. It is especially difficult for people to understand how someone with high intelligence and verbal skills can have difficulty with social functioning, as many people with Asperger syndrome do.

Controversy over the terms in the Michelle Dawson controversy

In the Michelle Dawson controversy these terms were part of a controversy over ABA. In response to this controversy, ABA supporters claim that the people protesting ABA have Asperger syndrome and are not "really" autistic, so shouldn't be allowed to speak for autistic children. Some of them claim that Asperger's and autism are so fundamentally different that Asperger's should be removed from the autistic spectrum completely.

Anti-ABA activists responded to this by pointing out that many of them have a diagnosis of autism and not Asperger's. They also believe that their opponents use the word "high functioning" or "Asperger's" as an excuse to ignore the opinions of people who disagree with them, while using the word "low functioning" as an excuse to say autistics with that label cannot speak for themselves and give pro-cure advocates an excuse to speak for them.

Institutional damage

Autism rights activists oppose the damage done to autistics in mental institutions.

Historic prognosis for permanently institutionalized autistic children

Consider these facts about historical autism institutions

  • It is well known that institutions are not parent substitutes at all; early and/or permanent institutionalisation will harm social and emotional development of any human being. Autistics are not immune to this effect.
  • The routine-seeking traits of autism lend themselves to Institutional Damage, as many autistics would find living thousands of completely identical days quite easy.
  • Historically, almost all autistics, particularly those severely affected, were permanently institutionalized from an early age because no one knew what was wrong with them or what to do about them. Having such a child was an embarrassment and, in former times, a possible sign of demonic involvement.
  • After decades of institutional damage (with or without the treatments of that era, usually without), it is unlikely for an autistic to learn to speak, to become socialized or to engage in useful work. This fact has given rise to some statistics saying autistics in institutions never improve.
  • The statistics were used to predict institutionalized autistics were doomed never to learn or grow; however the importance of institutional damage was entirely forgotten and led to the statistics-backed over-mediatized belief autistics never learn speech or socialization at all. Many doctors (including a few older autism experts) firmly believe autistics can't learn these things by themselves, or with just parental assistance (e.g., Jessica Park). These men tend to disregard the fact that many autistics can and have done so; they may claim such people were misdiagnosed and were never actually autistic.

In any case, long-term institutionalisation of autistics denies them the right to potentially lead a normal life on their own. There is no way to know who will/won't improve or by how much.

There are now a great many well-documented cases of autistics - living in a family, a group home, or independently - who actually taught themselves the verbal and social skills needed to survive. The argument that such people are rare or misdiagnosed is no longer mainstream in either the scientific literature or the media.

IQ tests are usually performed to predict or confirm permanent institutionalisation of patients who seem to have poor intellect. These IQ tests may gravely underestimate the potential/intelligence of an autistic. For example, if sensory oversensitivity causes distraction during the test (such as the noise of a watch timing the test, the aftershave/perfume of the examiner) or acute neurological discomfort caused by the moment where routine is broken (such as taking the test in the first place, having to walk into an unknown place, etc).

Intelligence Tests and Autism

IQ tests are regularly used during the process of an autism diagnosis. However, this is controversial. Many people believe intelligence tests are designed to test the intellectual abilities in neurotypicals and are therefore inappropriate for autistics. Some people believe separate intelligence tests need to be designed, specifically with autistics in mind. In addition, there has long been controversy over IQ tests in general. Some people don't believe intelligence is testable at all, and others believe IQ only tests a person's ability to do well on IQ tests and doesn't test anything useful.

Some people believe too much emphasis is placed on IQ within autism and that divisions between those who are classified as having high IQ scores and those who are classified as having low IQ scores are wrongly made.

Most autism rights activists would either oppose IQ testing at all, or would support the idea that new tests should be designed specifically for autistic people.

Famous Autistics

There has been strong speculation that well known contemporatory and historical people may have had some form of autism. Those who are most commonly discussed are Albert Einstein, Bill Gates, Isaac Newton, and Thomas Jefferson.

Arguments in favor

People who believe the allegations 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 doesn't 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 point out that Einstein (the most frequenly quoted as alleged to be autistic) was a late speaker, did poorly in school, was a loner as a child, and needed his wives to act as parents when he was an adult; factors that make him "obviously" (or at least stereotypically) autistic.

Arguments against

Some people claim these people only represent very mild cases. Some people 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 spectulation over historical figures.

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 autism rights activists often to show people what a loss to society there would be if autism were cured. Others in the autism 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.

Internet campaigns

In the early 2000s, activist campaigns started over the Internet.

See also

External links

Organizations