Autism FAQ - Controversies

See also section below, "History", for older controversies.

These are subjects which can stir up debate on the AUTISM mailing list and would presumably do so in any diverse group of autistic people and people involved with autism. If you have to deal with autism, you should at least be aware that there are such points of controversy. In fact, it is likely the that no matter what this memo says on these issues, there will be complaints.

Is Autism a Disability?

Well-adapted autistic people and autistic people who are close to being sufficiently adapted to function independently have naturally brought up the question whether Autism should be considered a disability, or whether it should simply be considered a somewhat different kind of personality. On the other hand, there are certainly autistic people who need constant supervision and help simply to get through life. A related and dangerous question that people sometimes ask themselves is: "if my or someone else's autism could be 'erased', would I agree to that?"

Inclusion in education and society

How much? How much effort? What can society afford? How can society deny basic rights to individuals?

How to approach the treatment of Autistic children

See section above: "Treatment".

There are several well-developed and widely used approaches the treatment of Autism and education of autistic children that are quite different, and parents of an autistic child might find themselves involved in such a program without being fully aware of the alternatives or the general opinions on the approach. In general, each of the methods of treatments has its enthusiastic supporters (or it wouldn't exist) and its detractors, thus there is a "camp" associated with each treatment.

I shall attempt to list some major "camps" associated with dealing with autistic children. As I said, in each case, you might find yourself among people who believe a particular method is generally proven and will advise you to give their approach strong consideration. But happenstance might have placed you among other people who consider the very same approach to be of limited value at best.

I could say that "there is no answer", but I cannot support such a claim: one of these groups of people may well turn out to be right and others wrong. One particular approach might one day become well-established as best. But there are other possibilities: perhaps different approaches will be shown to be effective for specific kinds of Autism stemming from different underlying causes; perhaps no single approach will be best for the majority of Autistic children.

What I can say is that universal agreement on approaches to treatment has not been reached at this point despite what some people might tell you. You may choose to adopt one approach whole-heartedly. But you ought to at least be aware that there are likely to be sensible people who disagree with it and would suggest alternatives. It is not easy making such a choice.

Some approaches which have large circles of adherents:

The causes of autism

Along with controversies on the treatment of autism are those caused by theories as to what causes it. There are people who get very excited one way or the other about the following questions:

For each of the first two questions, there are vocal people who say "yes". For the last question, there are vocal people who say "no".

Theory of mind

While not a cause of autism, the "theory of mind" rubs some people the wrong way.

Research funding

While there is naturally a consensus among parents and professionals that more research would be helpful, there is some controversy as to what kind of research should be done. To some degree, this follows the controversey over the causes of autism, particularly in the area of genetic causes. Some say that research has already explored this area sufficiently and liken such research to other controversial genetic research areas such as research into the genetic causes of social behavior. The impetus to look for genetic causes to autism certainly is partially motivated by the perception that research into psychological and educational areas is often both expensive and inconclusive, in contrast to genetic research, which, when it does turn up some information, it is often conclusive.

Reports of abuse through Facilitated Communication

Just as the issue of recovered memories of abuse has raised controversy, the fact that some people disbelieve the reliability of communication produced through facilitation leads to controversy in the use of it as evidence for the purposes of investigations of potential abuse and as legal evidence in abuse trials.

The use of aversives to manage behavior

On one side of the issue is the necessity to deal with atypical behaviors ranging from benign but unusual to dangerous; on the other side is a history of misuse of aversives as well as suspected misuse of aversives, the assertion of some that other methods achieve the goals as well or better, and the fundamental issue of human rights. There are dangerous behaviors, there are people who would be able to function more freely in society if an effective way is used to teach them to manage their own behavior, and there have been people who think that such benefit is worth the use of aversives. There are people who believe aversives are never helpful; there are people who believe that if such methods are sanctioned, that the sanction will be abused, that someone, somewhere will be overusing the methods. And there is a lot of suspicion on the subject. See also "Treatment".

Autism research and support organizations

Among the research and support organizations in the USA are ASA, ARI, CAN, and NAAR, and there are more. I hate to air the autism research/support community dirty laundry and don't know all the details and often ignore what I hear, but it is likely that the multiplicity of organizations reflects more than a multiplicity of functions, it also reflects some of the conflicting views on approaches to treatment, research and support, and perhaps on occasion it simply reflects politics within the autism research/support community. Discussions on the online forums will on occasion air & reflect these disagreements.

Having said that, there are perfectly valid functional reasons for a multiplicity of organizations, e.g. orientation towards a particular kind of support or research. While having them all within one friendly unbrella organization might make some people more comfortable and perhaps make all those organizations easier to find, there are also advantages to independence.

How much public funding should be dedicated to special education

Is (such-and-such a person) autistic?

The "Rainman" donation to the Autism Society of America

This is a short explanation of a brouhaha that you might read reference to. Bernard Rimland served as a free technical advisor for the movie Rainman. Dustin Hoffman responded with a donation which was sent to the Autism Society of America, who spent the money. Bernard Rimland claims that the donation was intended to be sent to the Autism Research Institute but was sent to the Autism Society of America by mistake. As of 5/97, there is a suit in court on the subject.

I have no information on the ASA's side of the case, but Bernard Rimland has shown letters from Dustin Hoffman and Barry Levinson (director of Rainman) that support his claim.