In a recent interview with the simons foundation , Ari Ne'eman advocated for having autistic persons give input on research into autism. We already have the interagency autism coordinating committee which is packed by members of the neurodiversity movement who claim to be on the autism spectrum yet apparently have little or minimal disability. To date, not a single pro-cure, anti-neurodiversity person on the spectrum has been appointed to this board. John Robison has served on various research committees in an advisory capacity and stated he was on the board of the CDC's ADDM, which tracks the prevalence of autism in the U.S. He also claimed that he was asked by the Harvard TMS group to assist in formulating the TMS experiments they did in which he was a research subject. This is in spite of the fact that he dropped out of high school in the tenth grade.
In the article, Ne'eman mentioned that as African Americans and Hispanics are involved in research in the problems these groups face that this should apply to persons with autism (Gadfly is not using first person language that ND's insist upon) Gadfly feels this is a bad comparison as race does not disable a person as autism does.
He also mentioned that there are deaf people who participate in research on deaf people. What about other medical conditions? Do diabetics insist that they give input into scientific research on diabetes, even if they're not formally trained molecular biologists. Do people who've had infections sit on FDA boards and decide which antibiotics should be approved? Though Stephen Jobs was a brilliant man who accomplished much in his life, he didn't spend time giving input on cancer research. Why is autism different?
Ne'eman has a bachelors degree in political science. Though far more educated than John Elder Robison, Gadfly wonders what he knows about research methodology, statistical analysis and what other qualifications he has to analyze or interpret statistical data. One of the lines from the Simons Foundation article is particularly interesting:
The goal is to boost the research’s real-world impact by getting input from those most affected by it
Does this mean that Ne'eman is qualified. As far as I can tell, Ne'eman's only current disability is that he's overly sensitive to velvet texture. Other than that, I don't understand how he is disabled let alone being one of those most affected by autism. According to this sentence, only people who are completely nonverbal, have IQs less than 30 and are still in diapers and under some sort of institutional care are the only ones who should be giving this input to the government. Will Ne'eman include these? Is this who the government is going to put on the IACC and on these scientific advisory boards next? With all the crazy things that the government has done with autism, I suppose nothing should surprise me.
Tuesday, June 16, 2015
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