Friday, March 28, 2008

What IEP should stand for

Yesterday I was reading one of the multiple blog entries by the very prolific blogger Kristina Chew at She was talking about her son's IEP and some of the views she and her husband had on their son's IEP and some of the logistical problems they had being busy academic professionals in attending their son's IEP in person. They are among the many parents of autistic children whose tears for toasted snow will most likely not be fulfilled. Many of these parents, including Dr. Chew and her husband insist that ABA be included in their autistic child's IEP-a treatment that promises a coin-flip probability of complete normalcy for the autistic child. Naturally, they present no adult outcomes in the peer reviewed literature, only informally at conferences, where I am unable to look at their results. I emailed Tristram Smith, Ivar Lovaas' heir apparent, asking him if he could email details of these conferences and if they would ever publish a study presenting adult outcomes. I was told that they wanted to publish their adult outcomes but "logistical problems", whatever that means, prevented them from doing so, but he emailed me a power point file about the conference. It turned out the file he emailed me just was a list of tests they gave the research subjects and nothing else. My friend Stephen Shore suggested that I email Dr. Smith and ask him for something more, but I just did not have the inclination to do so.

I still wonder why these logistical problems would prevent them from publishing in the peer reviewed literature in spite of the huge NIMH funding they have received specifically to study adult outcomes in the research subjecs that the wrote about in their 1987 study but not prevent them from making presentations at conferences.

This sort of gave me an inspiration of what IEP should stand for: Idiotic Expectations Program.

The End

Monday, March 17, 2008

The serenity prayer

God grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference.

The above is the serenity prayer, which is said at the end of 12 step meetings which I occasionally attend. I believe that both parents of autistic children and those who cling to a belief in neurodiversity should learn this prayer and repeat it to themselves and take it to heart in their own lives. For those of them who are either atheists or agnostics (this includes myself actually) the word God could be omitted and it could be called a saying instead of a prayer. Parents of autistic children cling to figurative opiates like ABA as a treatment that will make their children completely normal in spite of the evidence to the contrary. They cling to a belief that thimerosal causes autism, not because of any scientific evidence but rather because it gives them the hope that some sort of treatment could be found on the basis of this etiology. They lobby for flawed laws like IDEA because of the mistaken belief that their children will get some sort of benefit.

Proponents of neurodiversity cling to the flawed notion that autistics need acceptance and not cure and that if society would only change to accommodate autistics, autism would not be a problem. The autism is still there and no problems are solved by this philosophy. Many parents of autistics and most persons who preach neurodiversity would be better off just accepting the things they cannot change. Whether the parents like it or not, their children will always be autistic, these treatments and flawed theories of etiology with the promise of a quick fix won't help them. They need to accept the things they cannot change. This does not mean all is lost, they might with certain types of teaching their children and being loving parents and raising their children to the best of their abilities, but be able to help their children achieve maybe more than they would without their parents trying to do the best for them, but it will take courage to apply this philosophy. It will take courage for those who believe in neurodiversity to stop bad mouthing parents and charity organizations run by people who only want a better life for their kids. It will take courage for the neurodiversity people to stop using psychologic defense mechanisms like denial and reaction formation and to just accept that their autism is really a medical (not social) disability and not just an alternative life-style or culture.

Above all, these people need to have the wisdom to know the difference between what they can or cannot change. Though their autistic children may be able to get somewhat better and overcome some obstacles, they won't be able to function as well as the parents would like in most cases. I don't think I can comment on wisdom as it relates to neurodiversity as it would just make me too angry and I would be accused of trying to start a flame war with anyone who happens to read this post who thinks that autism is just a social disability and not a medical one and who thinks that autism research to look for a cure or at least help those as much as possible is wrong or immoral or does not need to be done, so i will let it go at that.

Again, with the God part omitted for all of the non-believers out there.

Grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference.