In the better late than never department, I've decided to give a point by point rebuttal to a speech given at IMFAR by one of neurodiversity's most prominent proponents, John Elder Robison.
Again, Robison uses the 1 in 68 figure for autism prevalence so frequently misrepresented by autism advocates and media pundits. He claims to have served on the NIH and CDC committees that discussed the formulation of research at how those numbers were arrived at, yet is woefully ignorant of what those numbers actually mean (assuming he's not outright dishonest). He writes that this means there are more persons with autism than Jews, Japanese Americans and that these numbers show that there are more autistic people than anyone every realized. As I've mentioned in a previous post. The 1 in 68 number was based on just one survey the CDC did in various select parts of the United States. There was a huge range of numbers in various parts of the United States with Alabama being by far the lowest and New Jersey and Utah being much higher. The number only applied to persons born in the year 2002. Anyone who reads the CDC report itself will see the 1 in 68 kids were not formally assessed. If there was something in a school record suggesting the child had autism they were counted in the survey without a diagnosis.
Robison makes the apples and hurricanes comparison between who should advocate for Jewish people or native Americans with who should advocate for autistics, stating autistics themselves. Yet autism is a disease/disability of childhood and though there are autistic adults many autistic people are still children so in the meantime their parents advocate for them. To date, five individuals purported to be on the spectrum have served on the IACC. All of them have opposed curing autism. Not one person on the spectrum who is in favor of a cure or finding treatments to alleviate autism has been appointed, in spite of the fact that Roger Kulp has expressed an interest in the position. At one time, Robison claimed to be in favor of research to "remediate" the debilitating aspects of autism (whatever that means). Since he's left the science advisory board of autism speaks, his views have become far more radically neurodiverse (I don't know if this is coincidence or not) and he now states that the disabling aspects of autism are largely a construct of society and if the correct accommodations were made autism would not be a disability. He claims that 1 in 68 persons had autism in the 19th century and before, but somehow they escaped detection as society was so different, yet fails to explain, how someone who could not speak, threw a temper tantrum and was totally impaired from self-stimulation would have been able to hold a job as a blacksmith for example.
Let me make an analogy to counter Robison's. As far as I know, we don't have a public citizen member board of the federal government for cancer, diabetes, schizophrenia or any other disease you could name. We certainly don't have someone who did not complete the tenth grade in school serve on any of those boards. Steven Jobs was a highly talented individual who contributed great innovations to society. He was afflicted with pancreatic cancer yet did not serve on any scientific advisory boards to find treatments for cancer. People with infections don't serve on boards to treat antibiotics. If Robison can name me any Ph.D. scientist on the spectrum who is capable of doing research to help autism, then maybe i'll buy at least part of his argument and I would support that person in their endeavors if it would help find a cure.
Robison states that people saying they want a cure for autism is a slap in the face for everyone who celebrates the gifts autism gives us, but fails to mention any. I feel Robison's speech and his anti-cure rhetoric are a slap in the face to me and any other individual who wishes their autism or loved one's autism could be cured including me.
He states that everyone who has autism suffers. Well, John, I have news for you. Every human being, autistic and non-autistic, handicapped and non-handicapped has suffered. It would be an anomolous human being who has not suffered. He cites some of the health problems that autistics have including suicide or depression and claims he's at risk for them every day. For him to imply he has any of the problems a typical person with autism has is ludicrous. It is highly unlikely someone of his functioning level would be at risk for the same types of health problems others on the spectrum are. That is assuming Robison is on the spectrum at all. I'm still trying to understand how someone who has stated they have no disability at all merits a diagnosis.
Robison admits that he has never experienced what it is like for a person not to be able to speak. Well, I experienced it, though I don't specifically remember what it is like. I did not recover my speech until close to age five, but I was still nonverbal.
Robison defends individuals on the spectrum who claim the word cure equates with getting rid of autistic people and says we should not take that attitude because they would be offended by it. Well, I'm offended by Robison's attitude and their attitude. If someone is so irrational they actually believe that curing a neurologic condition means getting rid of people that is their problem and I hope no scientist will take what Robison says on that matter seriously.
It is indeed unfortunate that IMFAR, an organization that should be devoted to research on how to mitigate and ultimately cure autism would give this individual a platform on which to speak.