According to an article in yesterday's new york times there is now talk of eliminating Asperger's syndrome as a diagnosis in the 2012 edition of the DSM. One of the reasons given is that the diagnosis is confounding and means different things to different people.
Asperger's syndrome being included under the rubric of autism has been a boon to two different groups of autism aficionados with whom I have been at loggerheads at various times.
The first group is the mercury militia, vaccines cause autism group of people who claim that there has been an epidemic of autism. They cite the increase in prevalence from 1-4/10,000 to the current rate of 1/150 (or even higher) that has been cited by the CDC and others sources. It is very likely that at least part of the reason for this increase has been the introduction of Asperger's syndrome into the autism lexicon. The same is true for autism speaks and the numbers that they give to generate fund raising. Without these numbers they would not be able to give the simplistic quick fix solutions of chelation and other questionable methods of treating autism. Or the claims that vaccines have caused an alleged autism epidemic. It is unlikely they would have been able to do this without Asperger's.
The second group is an ugly cult called neurodiversity, which claims that autism is not a defect or a disorder but merely a difference. Autistic people would do just fine with the right supports. These people claim to speak from personal experience. Yet it would seem that the vast majority of them have Asperger's rather than an autism spectrum disorder per se. Can they really speak for me let alone others such as John Belmonte or Dov Shestack who cannot speak and have challenges in life quite different from theirs?
University of Michigan professor Catherine Lord has been quoted in the article as saying there is no difference in the diagnostic criteria used to assess Asperger's from high functioning autism. However, my understanding of the situation is different from hers. One of the things that really differentiates high functioning autism from Asperger's is the presence or lack of a speech delay of some sort before the age of 36 months; the former would indicate autism, the latter Asperger's. Though at one time I thought of myself as being possibly Asperger's, now I don't think of myself that way because I did indeed have a speech delay. Though, by most standards, I would consider myself quite high functioning, my problems are probably more severe than most of those in the ND movement and some others who call themselves Asperger's and by extension "autistic". Nowadays autism is often diagnosed in persons before the age of 3. Asperger's is often not diagnosed until about age 8. So it would appear that though there may be some similarities it would seem that this would show that we are talking about two distinct conditions.
Unfortunately, the plan is not to say that persons with Asperger's can no longer call themselves autistic but to include all of these people under one rubric, autism. Not surprisingly, ASAN leader Ari Ne'eman is a proponent of this plan. The article quotes him as saying he does not want to look at himself as being a superior Asperger's person but someone with autism. According to the recent Newsweek magazine article that was done featuring Ne'eman, unlike myself, he did not have a speech delay before the age of 3, but was able to say the names of various dinosaurs at age 2. He was not diagnosed with any sort of an autism spectrum condition until the age of 12. Prior to age 12 his diagnosis was Attention Deficit disorder. If Ne'eman had presented with a clinical picture similar to mine before the age of 3, it is very possible that he would have been diagnosed with autism at the time.
My proposal to the authors of the DSM is to eliminate both Asperger's and PDD and just have one diagnosis of autism. One of the mandatory criterias for whether or not one could be diagnosed as autistic would be to have had a speech delay before the age of 3.
This would not only mean that Ari Ne'eman could no longer call himself "autistic", but the same would probably be able to be said for many if not most of the members of club ND. How many of these autistics actually had a speech delay at age 3? If they didn't, can they really speak for myself and say "most of us don't want to be cured". Or in general talk about how autistics feel. Would they be able to present their views before the IACC from personal experience? Would the autistic self advocacy network have to change its name? It is possible that if the DSM were changed in the manner that I wanted it to be changed this could be the death knell for the neurodiversity movement. Persons interested in autism with a speech delay would be able to read stuff on the internet about autism in peace. We would not be bombarded with the constant trivialization of autism. We would not be insulted because we want a better life for our children or for ourselves. They would no longer be able to call those of us who don't like our autism and wish to be cured of it "quislings". They would no longer be able to claim that they deserve to be on the board of directors of autism speaks because of the old "nothing about us without us" mantra. After all, it would no longer be about them.
I realize all of these scenarios are a pipe dream. Assuming that the DSM is in fact changed and Asperger's is eliminated as a diagnostic category (it may or may not be) they could still say that they are autistic. It is irrelevant that they never had a speech delay or the challenges that more severely autistic persons (even myself included) have had. This is what would probably happen if the DSM were changed, they would just call themselves autistic. They would even, according to the article itself, still be able to use the term Asperger's in the loose sense.
Of course, like Martin Luther King, I have a dream.