In the past, one of the chief complaints directed against Autism Speaks was the fact that they had no persons on the autism spectrum as members of their board of directors or in any positions of power in their organization. After years of not responding to the criticism and inquiries, they finally addressed the issue by putting John Elder Robison on their scientific advisory board along with 30 something parents and scientists. It did not matter that the other members were physicians or Ph.D. scientists and Robison was a high school dropout with no knowledge of autism science and whose only qualification was that he was well known, having written a best selling memoir about his experiences growing up with Asperger's syndrome. They also approached Stephen Shore, a well-known spectrumite with a doctorate in special education. Shore is also a very prolific conference presenter, giving over 100 conference presentations in a year in all four corners of the earth. Shore scorned their offer (though I don't know which specific position they offered him) stating that he did not want to work with autism speaks until the organization changed its philosophical goals and became more to his liking.
As most remember, Suzanne Wright leveled some very harsh rhetoric about the disabling aspects of autism and Robison did not like this and resigned from the science board. Autism speaks went from having one person on the spectrum in their organization in an advisory position to none.
A couple of years later, the Los Angeles Times published a scathing editorial by journalist and Neurotribes author Steve Silberman criticizing Autism Speaks for a variety of things and for not having any autistics on their board of directors or in positions of power. He wrote the absolutely ludicrous analogy between Autism Speaks lack of board members on the spectrum with the NAACP being run by white people and not having any blacks in positions of power. It should be obvious to anyone with a modicum of intelligence that people have autism during childhood and parents take an interest in the welfare of their children, so it makes sense that parents would be on board of directorships and people who are qualified as scientists are the best to be on scientific advisory boards. Just as there are no students on at least most municipal boards of education, even though they are the ones who are the consumers.
Though the timing may have been a coincidence, not long after Silberman's piece, Autism Speaks reversed its mission statement saying that cure and prevention were no longer part of their goals. This lead Steve Shore to regard autism speaks as a safe haven and he accepted a position on the board of directors. Valerie Paradiz was the second autistic person to be appointed to the board.
If having autistic board members is necessary or desirable, do Autism Speaks' representatives fit the bill of good board members or people who are representative of the autistic population?
Though Robison had behavioral problems growing up and had therapy and special education as a child and had academic problems that lead him to drop out of school, the rest of his life seems fairly normal. Robison even stated in an interview with Steve Silberman that he was not a disabled person in spite of having an autism diagnosis. He was able to make a good living as a self-taught engineer, get married and support a wife and child. He was also able to write a best selling memoir. Except for participating in some non-clinical trials of experimental TMS and writing about these, he has expressed no interest in the science side of autism. In addition to his lack of formal credentials he also wrote about studying geek success as a legitimate scientific endeavor and showed a lack of knowledge of even the laws of basic chance when he wrote that the reason for the 4:1 sex ratios of autism in males versus females was possibly because the first born children of parents of autistics were usually boys and then they stopped having children so the girls would not have a chance of catching up. He also encouraged autism speaks to fund a media project that involved his own son which seems less than ethical. He stated on wrongplanet.net that autism speaks had reimbursed some of his startup costs, accepting money from an organization where he supposedly just had a volunteer position on the science board. Despite having written this on wrongplanet, he later denied in a comment to me that he'd ever accepted money from autism speaks and that he just paid for some of his son's videos out of his own pocket and then autism speaks later funded them without giving Robison himself money.
Though Steve Shore was diagnosed autistic at a very young age in the sixties, he was so high functioning he never required special education, he was also able to get married and write a memoir and get a doctorate in special education and make a good living as a conference giver and special education professor. Except for some mild sensory issues, it's not apparent how autism currently affects him or impacts his life. He has stated that he's opposed to curing autism, he believes that autism should not be regarded as a demon to be slain with scientific research, but rather something that can be remediated with special education and accommodations. He recently stated autistic weaknesses could be reframed as strengths. He's always been vague on the details of how this can be done.
Last but not least is Valerie Paradiz who according to one source stated that autism is not a disability but a strength. Ms. Paradiz also advertised herself as a Ph.D. autism consultant not mentioning that her doctorate was in German literature, something hardly relevant to autism. She also started a special school for autistics. Ms. Paradiz was also able to marry, have and support a child and be a college professor and write a memoir about her son. She was not allegedly diagnosed with autism until age 40 in 2003 many years after she'd written the memoir about her own son Elijah who is on the autism spectrum. It would seem strange that it would take this many years for her to be diagnosed and she would not suspect she was on the autism spectrum and obtain an evaluation as soon as her own son was diagnosed.
Are these three satisfactory board members who represent the interests of autistic people and who are familiar with the experiences of a typical autistic? Gadfly does not believe so.
John Robison has criticized me in the past for only being negative on my blog and not presenting positive solutions instead of spending time complaining about him and other individuals with whom I've had disagreements with. Perhaps John has a valid point, so I'm going to take his advice in this post.
Assuming autism speaks one day returns to their former position and denounces neurodiversity or another alternative organization springs up, does that mean there should be no persons with autism on the board of directors or in positions of power? There are individuals with autism who don't like the condition and are interested in pursuing treatments and possibly a cure and don't like or agree with neurodiversity, and I'd like to recommend them for the board of a new AS or other group.
I'll start with myself, though I have not had the ability to pursue scientific research let alone be a scientist, I'm very interested in the subject and would like to find the etiology of autism and use this to find treatments. I spent eight years in special education, have basically not had a girlfriend except for some light dating stuff, and have bad motor coordination problems, and have been fired from 20 jobs. Though I've done some writing I have not been able to get published except on Exceptional Parents' website and one article in l.a. magazine.
The best choice hands down is Roger Kulp, an individual well-schooled in the science of autism, particularly the research involving cerebral folate deficiency that Richard Frye, Jill James and Daniel Rossignol pursue. He's been a beneficiary of that research himself, having gone from special ed student having seizures to being partially recovered from his autism with Leucovorin and other treatments. He's had his genome sequenced and found mutations. He spent years in special education, had problems with elopement and nearly hit by cars, and is on SSI and never had a job.
Yuval Leventhal is also a good choice having had some special education and pursues botox as a treatment for autism.
Old school advocate Tom Mckean who has experience serving on the Autism society of america's board is also a good choice. He's interested in finding a cure for autism and has been a critic of neurodiversity and self-diagnosis.
Benjamin Alexander is another good choice. He's a nonverbal individual who uses augmentive communication to express his thoughts and has said he desires a cure.
All of these people have not been able to marry find girlfriends and with the exception of Yuval have either never had a job or have had grave difficulties in working.
What about the female of the species? I'm repeatedly told by ND that autism is under estimated in girls because they present differently. Well a young (30 years old) woman who writes under the pen name Gwen Kansen would be excellent for this. She does not like her autism and wants a cure and though she's had some boyfriends and I believe is currently engaged, she's had trouble holding down jobs. She also wrote an article critical of the neurodiversity movement. Of course Gwen might not want to reveal her real name which she might have to do if she were publicly serving on a board.
Another female candidate is Sarah Weatherill, a writer in Canada who states that she hates having an autism spectrum condition, wishes for a cure and does not like neurodiversity. I don't know anything else about her biographical details.
I believe all these choices for autism speaks or an alternative organization (assuming autism speaks does not change its ways) would be better than the three board members they've already had, but I guess I won't hold my breath.