In my previous posts in the last few posts, I have wondered about why in the world an organization that claims they are funding research in the hopes of mitigating or possibly curing the horrible affliction called autism would fund videos done by Alex Plank. In fact, yesterday, I emailed Mr. Marc Sirkin who is apparently in charge of media matters for autism speaks, Peter Bell, vice-president of autism speaks who apparently has developed a friendship between Plank, Robison, Sr. and Robison, jr. and to the contact address for autism speaks itself, asking why they would fund such an endeavor.
Though my email still remains unanswered by any of these three entities it seems that Mr. Sirkin has responded here. He gives what in Gadfly's view is a rather vague statement that somehow these videos are improving the dialogue among various members of the autism community and that a video that he prominently displays on the blog post in which an interview is conducted with a journalist of a major magazine which helps trivialize this disability and which the journalist for this magazine makes sweeping statements without bothering to do his homework and implies that the creation of a significant software company and the well-known Craig's list were due to attributes of the autism spectrum. He states that the financing of these videos are somehow helping in this mission to achieve the goal of addressing autism which he (unlike Alex Plank and other ND's) calls an "urgent health crisis". How any of these autism talk TV videos, particularly the latest one featuring the previously mentioned journalist are helping in this regard is unclear to gadfly. I am wondering how the headbanging, finger chewing nonverbal autistic children of certain parents who contributed money to autism speaks and participated in their walks are being helped by Plank's videos. Another salient point is that Sirkin makes is the panned (apparently macro) statement of Plank's that autism speaks is in no way influencing the content of the videos as if this has any significance or is relevant to anything. Of course Plank's
singing a completely different tune and praising the organization which previously was anathema to him goes unmentioned in Sirkin's response.
John Robison's interesting duties as member of scientific advisory board of AS
As most in the autism blogosphere know John Elder Robison has been appointed as a member of the scientific advisory board of autism speaks, his apparent sole qualification for this position being that he wrote a best selling memoir about his life with Asperger's syndrome. In his book Robison claimed that a cure for Asperger's was not needed He went further than saying that he desired no cure for himself but that also no cure was needed for anyone else with condition-the fact they might be too impaired to make $100K a year as an engineer, be successful business people in automechanic enterprises, be able to write memoirs that appeared in the New York Times bestseller lists was beside the point.
Robison later claimed that this did not mean he did not care for others on the spectrum who happened to be less fortunate than he was. He claimed he was interested in reviewing scientific research proposals for autism speaks that would help in ameliorating the more disabling aspects of autism. The start of Robison's affiliation with AS was not propitious being he immediatelystuck his foot in his mouth implying that he might know more about what was best for autistic children than their own parents, which naturally Harold Doherty of the autism in New Brunswick blog and MJ of the autismjabberwocky blog took umbrage to.
I have yet to see how Robison in his capacity so far with AS has contributed to the betterment of autistic person's lives or made constructive suggestions on which science should be funded or how science should be done by autism speaks which might make it possible to ameliorate some of the more disabling aspects of autism which he stated was his goal in spite of stating that a cure for at least some ASD's was not necessary for anyone at all in his book.
It would seem however that based on Sirken's post and lame excuse for Plank and company that Robison has gone out of his scope in concentrating on the science of autism speaks and has instead chosen to spend more time pursuing media endeavors rather than science and in a case when his own son is one of the two principals involved. He apparently urged autism speaks to fund Alex Plank's endeavor which they agreed to do.
I have left a comment on autism speaks blog. In case they mod it out and don't approve it. I will reproduce it here:
Hello, Mr. Sirkin. The funding of autism speaks of this young man’s media endeavors when he has libeled your organization, implying your main goal is to develop a prenatal test when there are severely autistic persons who bang their heads and can’t speak. Others who are higher functioning such as myself who can’t hold down a job is a slap in the face, to all of the good people who donated money to your organization and participated in your walks as a matter of blind faith, so that this horrible disability could be mitigated or possibly cured.
No, Mr. Sirkin, your excuse does not cut it with me. If Peter Bell or anyone else from autism speaks responds to gadfly concerning this outrage, I will keep the readers updated.