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.