Autism Speaks has announced the appointment of three new members to their board of directors, two of three being on the autism spectrum. The neurodiversity movement (and possibly others) had railed against AS for years, claiming they were ogres for not ever having a single board member who had the condition themselves. Now I hope the neurodiversity movement is satisfied. We'll see if they call Shore and Paradiz traitors. So far, they have not used such graphic language, but upon the announcement of Shore's appointment, The Thinking Person's Guide to autism tweeted that they hoped it wasn't tokenism. The twitter account of boycotting autism speaks stated it was a step in the right direction but they still would not support autism speaks as long as they were pro-cure and used scare tactics to tell people how bad autism is.
Though Autism Speaks has stated that one of their goals is finding a cure for autism, they appointed the anti-cure John Elder Robison to their scientific advisory board in spite of the fact that he was a high school dropout with no knowledge of autism science. This did not satisfy neurodiversity proponents and Robison ultimately ended up tendering his resignation when autism speaks would not come around to his way of thinking.
Paradiz is a former professor of German literature at Bard College. She subsequently started a consultancy business for educating autistic children with no formal training or background, except for being the parent of a son diagnosed with Asperger's. She was apparently diagnosed well into adulthood after her son received his diagnosis. She was formerly married to Steve Edelson who took over running the autism research institute after Dr. Rimland passed away. She wrote a book about her son, Elijah's cup. In this book, she describes attending the Autreat conference, one of the premier neurodiversity conferences which is presented by Jim Sinclair's organization Autism Network International. I'm not sure where Ms. Paradiz stands on a cure for autism.
More intriguing is the appointment of Stephen Shore, who wrote the autobiographical account of growing up with autism, Beyond The Wall. He received a doctorate in education and is a professor of special education at Adelphia University. He also presents at conferences all over the world. I've known Steve for many years now and he's stated that he opposes a cure for autism because it would interfere with the gene pool. He also stated that at the time they appointed Robison to their scientific advisory board that he'd also been approached by autism speaks to serve with them in some capacity (though I'm not sure of the specifics) and turned them down because he disagreed with their views on a number of issues. I'm not sure why he changed his mind.
The biggest disappointment is that they did not appoint my first choice, Roger Kulp. Roger is someone on the spectrum far more severely afflicted than Shore or Paradiz. He has looked into treatments for his problems and extensively researched the literature on metabolic causes of autism. Roger has expressed an interest in either being on the science advisory board or the board of directors. I've written about Roger's background in a previous post so I won't repeat the info here.
I guess wanting autism speaks to stop supporting neurodiversity in a backhanded manner and taking such a cavalier attitude toward those of us on the spectrum who want a cure is too much to hope for.
Addendum: I've just spoken to Steve Shore and he states that he's had a change of heart because Brian Kelly, the new chairman of the AS board is advocating for supports and services over a cure. Mr. Kelly took over as chairman of the board after Bob Wright resigned in May. Mr. Kelly has written about parents contacting him for the need for supports and services. Though I am not opposed to supports and services for people on the autism spectrum, I do believe that autism speaks should give more priority to scientific research with the aim of curing autism. If autism speaks has headed in a new direction, this is certainly a disappointment.