Sunday, August 10, 2008

Possible faux pas by autism speaks

I have just found out about an interesting activity that Autism Speaks may be involved in. Unlike many persons in the autism community I have defended Autism Speaks' when I felt they were being unjustly attacked by neurodiversity proponents and those in the "mercury militia". I am also a supporter of the scientific research that Autism Speaks funds (well probably most of it) and the desire to find a cure for autism and prevent children from becoming autistic. I might even donate some money to them if my financial situation ever improves. In the past I have donated money to CAN before they got gobbled up by AS, but not AS itself since they have existed.

However, when I feel they have done something wrong or even if there is a possibility of wrong doing, I will write about it in Autism's gadfly. As the few regular readers of this blog know, I have done this previously when I found out the lab that Michelle Dawson works in received funding from AS. Also, when I found out that Morton Gernsbacher was a guest reviewer on their scientific advisory board I wrote about this too. These individuals have been consistently involved in activities counterproductive to finding a cure and preventing autism and I felt that this should be brought to attention.

Well here I go again. I am still intrigued by "$100 buck an hour phone consultation" Bill Stillman whom I have written about in the last two blog entries. I have still been reading some past blog posts of his and I found out that he has written a document that he is claiming will be included in a community school kit that autism speaks has just come out with. Here is the link for info about the school kit that Stillman was talking about On reading this link, I can't find anything specifically about Stillman. It just states that there is an appendix which includes certain articles. So, I am not positive that they are including any advice from this individual or not.

Autism speaks seems to be broadening the scope of the purpose that they were first intended for, i.e. providing funding for scientific research. Most likely due to parental pressure to do something for children in the here and now, they have expanded their scope to scholastic problems. I have somewhat mixed feelings about this. I believe that this organization should just stick to scientific research and not be a multipurpose organization and have message boards and social networking boards like the one they are apparently now in the process of developing. I think this new internet page on their website is supposed to be an autistic myspace of sorts. Of course, if there was something that could be done in the here and now for children, I would be for it, ergo the mixed feelings. However, I am really skeptical that a community tool kit would provide any answers for people trying to mitigate the problems that autistic children have in various school situations. Even if something could be done, it would probably be better done by other organizations. AS would probably be better off just spending all of its resources on scientific research to find a cure and prevention of autism as soon as possible.

This sort of thing is not unprecedented. Before the existence of AS, CAN had in its bylaws that they would only provide funding for research into the biology of autism. They violated their own bylaws by funding one of Lovaas' studies and also some stuff that Lovaas' proteges Laura Schriebman and Bob Koegel were doing. This is in spite of the fact that Lovaas has received considerable NIMH funding and yet has never submitted any adult outcomes of the children in his 1987 study to peer review. This was one of the criticisms I had of CAN when it existed. Interestingly enough, Dov Shestack, whose parents founded CAN,underwent ABA. At the age of 16, he cannot speak. I would think they of all people would not want to fund ABA as it would appear that this intervention was not very helpful to their son.

I don't know if autism speaks has any relationship with Stillman or not or whether they included anything that he wrote in their school community tool kit. However, even the possibility of this is troubling to me. This is a person who charges $100 an hour just to talk to people on the phone about kids he never met. Other than an undergraduate degree in education, having published a few books and diagnosing himself with Asperger's I am not sure what qualifications he has. He also apparently charges for in person consultations, though he says the person must inquire about the fees. He has claimed that he can tell exactly what an autistic person needs after only spending ten minutes with them. He claims that he is certain that autism prevalence will be 1 in 10 persons by the year 2018 at the latest. He seems to think autism is some sort of positive stage in evolution and that it is being directed by divine providence.

I thought that it was crazy that AS would fund a lab that employs Michelle Dawson and allow Morton Gernsbacher who writes articles saying autism should be accepted and not be cured and that there are severely autistic people who have made great contributions to arts and the sciences would be a guest scientific advisor and review research grants. I thought it was bizarre of autism speaks to publish John Michael Carley's piece, articles of understanding. Carley, is someone who found out that he had Asperger's at 36, just decided he had Asperger's after his son was diagnosed with an ASD and was able to make a good living and support a family and is another example of one of those "autistics" who has the gall to speak for me and claim that most autistics don't want to be cured. But if AS is really including things that Stillman wrote in a community school kit, this pales in comparison.

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