Controversies about functioning labels in the autism spectrum

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Labels used to describe the functioning level of autistic individuals have come into question, particularly by the autism rights movement. A number of controversies about functioning labels in the autism spectrum have arisen from this.

Proponents of different functioning labels note that there are many differences between individuals across the autism spectrum, and different characterizations are therefore needed. Others believe classifying people this way is insulting, inaccurate, and does not give a fair description of the autistic person's abilities and difficulties.

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[edit] Background on functioning labels

The labels we are concerned with here generally seek to divide the autistic spectrum in two, based on how close the subject's behavior is to that of non-autistics. The more autistic group is referred to as "low functioning", having "Kanner syndrome", or (confusingly) simply "autistic". The group whose behaviour appears to more closely resemble non-autistic behaviour is referred to as "high functioning" or having "Asperger syndrome".

Currently, DSM-IV contains two distinct autistic spectrum diagnoses: Asperger syndrome and autistic disorder. The main difference between the definitions is that autistic disorder involves a significant speech delay and Asperger syndrome does not. However, many people diagnosed with Asperger syndrome do have a significant speech delay, and most other sets of criteria allow for this. Moroever, many people believe that language delay is not a sensible or meaningful enough way to differentiate a diagnosis, even if it does divide the autistic spectrum in some way.

The terms high functioning and low functioning may be applied to the spectrum as a whole or specifically to people with a diagnosis of autistic disorder. (Anyone classified as having Asperger syndrome is generally considered to be high functioning, although this is not necessarily true in practice.) Conflicting criteria have been proposed to divide the spectrum. One common criterion 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 criterion 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. Note that there are autistic individuals without language skills who have a gifted-range IQ and vice versa.

The use of these terms is controversial. Most people who use the terms 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, or at least help, with activities of daily living. Most people who support the labels believe most or all autistic people can be easily classified into one of the two categories and that the labels are necessary to acknowledge that different autistic people have different abilities. These characterizations, again, are often at odds with the IQ and language skills criteria. Some people see high functioning autism and low functioning autism as entirely different conditions.

Others believe that autistics vary greatly in their strengths and skills, so that a one-dimensional, high or low functioning level is too imprecise and often misleading. They point out that there are some autistic people who have some characteristics considered high functioning and other characteristics considered low functioning. For example, many autistics have excellent written language skills but no oral language skills at all. Others may have high intelligence and no language skills but still need constant care or who injure themselves. They also point out that not all nonverbal autistics are incapable of self-care, and not all autistics who score an IQ below 70 or 80 are incapable of reading, writing, or speech. There are also autistics whose ability to use spoken language fluctuatues, or who have language skills some of the time but no language skills at other times.

Some autistic people find "high and low functioning" labels problematic when they have combinations of skills which are classified as high and low functioning, because having a characteristic considered high functioning makes it harder for them to get support for their more profound difficulties which are considered "low functioning", and having a characteristic considered low functioning makes it harder for them to get their skills recognized in the first place.

Michelle Dawson and at least some of the people at autistics.org are among those who do not believe in a distinction between high and low functioning [1].

In an interview with WrongPlanet.Net, Temple Grandin has argued that mild autism creates geniuses like Albert Einstein but "too much autism" causes people to be non-verbal. She has also stated, "The problem with the whole thing on curing autism is we do want to do something about low functioning autism." [2] Miss Grandin's comments themselves are controversial among autistics, many of whom disagree strongly with her ideas and regard them as eugenic.

In addition to the controversy about using intelligence tests to distinguish between high and low functioning, there is controversy about the accuracy of intelligence tests used on autistic people.

[edit] Political and social implications of the terms

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

In addition, some people (including many parents of autistic children described as low functioning) 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 severe disability and should be treated as such, not realizing that many of these autistic adults were once as "low-functioning" as their own children.

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 are 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 and daily living skills, as many autistics described as high functioning or Asperger's do.

Another perceived problem with the terms "high functioning" and "low functioning" is that they imply that less autistic behaviour is inherently superior to more autistic behaviour. The terms "Kanner" and "Asperger" (or "Aspie") are more neutral ways of labelling the parts of the spectrum. Such terms are used descriptively even by those who refuse to draw a sharp distinction.

[edit] Controversy about the terms in the autism rights movement

In the autism rights movement these terms were part of a controversy over ethical challenges to autism treatment such as Applied Behavior Analysis that came up in April 2004. In response to this controversy, ABA supporters claim that autism rights activists have Asperger's syndrome and are not "really" autistic, so shouldn't be allowed to speak for autistic children. Some of them (such as Lenny Schafer) claim that Asperger's and autism are so fundamentally different that Asperger's should be removed from the autistic spectrum completely.

Autism rights activists responded to this by pointing out 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.

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 Syndrome. 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.

A similar controversy came up again in December 2004 when Amy Harmon published an article in the New York Times titled, "How About not Curing Us? Some Autistics are Pleading".

[edit] See also

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[edit] External links

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