Thursday, January 19, 2012

Will New DSM end the autism epidemic?

Fred Volkmar, director of the child study center at Yale University has made the very strong statement that changes in the new proposed DSM that are due to come out this December will result in the end of the autism epidemic.

The definitions of autism will become far more stringent, making getting a legitimate diagnosis more difficult. At least according to Volkmar and the people he's worked with who compiled the data and have presented it to a conference. This data is as yet unpublished. Autism researcher Catherine Lord has disputed Volkmar's contention, claiming his analysis in part is the result of antiquated data.

I wonder what are the implications of this. Will people requiring various services or who want to get on disability have a harder time doing so? Will the Age of Autism crowd who insists that some changes in the environment (such as vaccines or more exposures to mercury) have their arguments refuted and be proven wrong if Volkmar's insinuations that the so-called epidemic is an artifact are proven correct? Will the neurodiversity movement have a harder time trivializing this condition, claiming it's not so bad and claiming that perhaps as many of 30% of autistics are savants have a harder time making their argument? Will certain extremely high functioning individuals such as Valerie Paradiz or Deena Gassner who present at conferences and make money from autism have a more difficult time doing so? What of Laurent Mottron and Isabelle Souleries' research? Will they still be able to legitimately claim that all autistics have superior skills in certain areas? There are other questions one could ask, but you can get the drift.

Aside from knowing that Michael Carley will be unhappy that he will have to possibly be associated with head bangers and diaper wearers and may no longer be able to fancy himself an incarnation of Bill Gates or Albert Einstein, Gadfly wonders if Volkmar is correct and if this will really change anything.

My first impression is that the answer is no. Nothing will convince Mark Blaxill, Ginger Taylor, Kim Stagliano and others that their kids did not become autistic because of vaccines. This is apparent to me. They will claim that Volkmar is wrong. Neurodiversity will continue to insist that Jamie Gilbert is not disordered but is only differently wired, that if society were to accommodate him, he'd be able to communicate using an assistive device, he wouldn't engage in head banging. His mother would not need to make all of these drastic videos and post them on youtube. They will claim she is a bigot for not accepting her son the way he is. Like other mothers who long for a cure, she only rejects her son and teaches him to hate himself. If Jamie is unhappy about his head banging, inability to speak and compulsion to self-mutilate it is entirely his mother's fault ala Bettelheim. These vicious hatemongers will not change their color.

I was denied disability, based on the fact that I was able to work somewhat in spite of my limitations, My success was punished while others' sloth was rewarded. The use of assistive devices has apparently given the government an excuse to deny disability benefits to people. Any excuse will be used to deny disability regardless of the reported prevalence of autism.

Having met both Deena Gassner and Valerie Paradiz, it is beyond my comprehension how either of these two merit an autism diagnosis. Of course, I may not know everything about their lives. Both of them allege to have been diagnosed by certified clinicians. I must defer to the judgement of the clinicians and realize that individuals who can attain advanced degrees, get married, have children must have impairments that are not obvious to my untrained eye and somehow merit a diagnosis under the current DSM criteria. But what if the DSM changes? Will Gassner and Paradiz lose their respective diagnoses?

I believe the answer to that question can be obtained by looking at another extremely high functioning individual, John Elder Robison. Mr. Robison had written a best selling memoir based on being on the autism spectrum. When neurodiversity complained of no autistics having positions of power in autism speaks, AS used affirmative action and recruited Mr. Robison, someone who hadn't even completed the tenth grade in school, to sit in a room with M.D. and Ph.D. scientists and decide what research they should fund. Robison also gets to decide how tax dollars should be spent.

This is in spite of the fact that Robison has admitted to not being a disabled person by any means (his words). Though I am not completely familiar with the current DSM criteria, I find it hard to believe you don't have to have some sort of disability to qualify for a diagnosis. Yet, I must defer to Robison's psychologist friend who diagnosed him at age 40. Perhaps there is some explanation as to how a nondisabled person can be legitimately diagnosed with this condition according to current DSM criteria. So somehow I don't see changing the criteria would take Robison's diagnosis away.

Is Volkmar correct? Will this end the autism epidemic (alleged or otherwise)? Will this change anything at all. No, I don't think so.

Monday, January 2, 2012

More media attention to autistic adults in the future?

I'm gratified to see Susan Senator and The age of autism are bringing attention to the problems of autism in adulthood which are largely ignored by the media. I wrote about this several years ago.

One of the likely reasons for the dearth of coverage of adult autism is the reluctance to acknowledge the poor prognosis that most with this condition will have once they reach the milestone of their twenty-second birthday. This is the time when autistics age out of the special education system and can no longer get certain services.

Ivar Lovaas' landmark study claimed that approximately half of the children in the treatment group achieved complete normalcy. These children were followed up in adolescence and had maintained their gains. However, Lovaas in his lifetime never published adult outcomes of these children though the oldest are now in their forties. We don't know what became of these children and how they fared later in life.

Other pie-in-the-sky promises are made for autistics with social skills training, speech therapy and other services. The insurance mandates being passed in so many states that autism speaks lobbied for is attempting to fulfil these promises. AS even went so far as to claim these services would make the difference between kids having friends and not having friends.

Ms. Senator, who wrote a book ironically entitled "Making Peace With Autism", now seems to have some trouble making peace with the fact that her son has aged out of this system and the obstacles she now faces as his mother. In spite of the fact that her son received multiple services under IDEA, he has not done well as an adult and Ms. Senator was compelled to put him in a home at age seventeen. Will others on the spectrum do as poorly or better than her son? Time will tell.

Another reason is that not as many adults have been diagnosed as children. Some believe that this is because there were huge increases in autism that started in the 1980s and then took off in the 1990s. Others believe that autism is a much more popular diagnosis because it enables disabled children to get services and cultural shifts in thinking. This debate will probably never be resolved as doing prevalence studies in adults analogous to the ones done on children will never happen. One must remember the analogy about looking for a needle in a haystack. The reason the CDC was able to get nearly 1% prevalence figures in children was because they presented to special education services and such; this does not happen with adults. The Brugha study done in England attempted to address this problem, but likely had a variety of methodological flaws which makes it claims of finding a 1% prevalence in adults dubious.

Now that the year is 2012 and the population of the birth cohorts in which a diagnosis was more common are coming of age. So we're going to see more problems that autistics face in adulthood come to the fore. Ari Ne'eman's no myths video will be shown to be a myth itself. Ne'eman and others like him won't be able to get away with painting a false rosy picture of autistics doing just fine in maturity.
Perhaps this is the start of something new. Adults with autism won't be so invisible anymore. We will no longer regard autistics as Peter Pans who won't grow up. With this new publicity we'll be able to assess how really effective ABA and the IDEA law have been. I realize the insurance mandates are something new. The powers that be may use that as an excuse claim that all hope should not be abandoned.

In the meantime, I hope that Senator's piece as well as the age of autism's coverage will generate even more publicity. Perhaps it's high time those of us who suffer from autism in adulthood get the coverage we deserve.