An idea for Autism Speaks and Neurodiversity

Suzanne Wright’s very recent op-ed piece and John Robison’s resultant resignation from the Autism Speaks advisory boards he served on for more than three years have gained a lot of traction on the blogosphere as well as Robison’s FB page as of late.

Ms. Wright has a very severely autistic grandson for whom she wishes a cure or a treatment which can help mitigate the hardships he and her daughter have to endure. She wrote a piece on this subject, possibly with the intent of helping to fund raise, which may have had less than tempered rhetoric.

Predictably, the neurodiversity movement (and possibly other persons with autism and/or their relatives as well) took umbrage to her essay.

John Robison, as I mentioned before, tendered his resignation and ended his affiliation with the highest profile of autism funding, research and advocacy organization because of this essay.

The neurodiversity movement, including Robison, has been critical of the advertising techniques that AS has used for years. They claim that these are intended to evoke pity and show a lack of respect for autistic people.

Practically since autism speaks’ inception, a variety of persons, mostly affiliated with the neurodiversity movement, has questioned why there are no autistics on the board or in executive positions with autism speaks. This probably contributed to Robison’s subsequent appointment to the organization. After this, there was little commentary or criticism of autism speaks exclusion of persons on the spectrum in positions of power or policy making in their organization.

All bets are on whether or not Robison’s resignation and subsequent vacancy of an autistic representative of AS does not elicit the same criticism and outrage that it did prior to Robison’s affiliation with AS. Also bets are on as to whether or not the ND’s will neglect to acknowledge or conveniently forget Kerry Magro’s involvement with the organization they find so odious.

Roger Kulp, one of the frequent commenters on my blog, has expressed a desire to fill the vacancy that Robison created. It is quite clear from what I have read of his life story, he has been far more impacted by his ASD than Robison has by his. Though I believe Roger may be a valuable voice, I’m not too keen on non-scientists serving on scientific advisory boards. Perhaps Roger could be a useful asset to autism speaks without serving in the same capacity as Robison did; I’ll address that issue later in this post.

John Robison has criticized me for what he believes is my unrelenting criticism of him when he’s expressed positions or done actions which I disagree with. He has stated that instead of being negative and criticize him (or others) I should offer my own positive or constructive solutions. This has not been easy for me, as I believe there are no quick answers or easy fixes for the problems autism causes. However, maybe he has a point. In this post I’ll suggest what I believe may be something constructive that I think would address the issues that Robison and neurodiversity has brought up as well as the issue from Autism Speaks’ point of view of how they can effectively advertise fund raising without perceived dissing of autistic individuals who may not like having someone state that are like lost children or that they are defective or their lives are abysmal, etc.

I suggest that autism speaks recruit volunteers from the higher end of the spectrum such as Roger, myself and others who would discuss the problems autism has caused them in their life. I could talk about my fine motor problems, ornithophobia, getting fired from jobs, lack of social relationships and the inability to concentrate and get things done during the day and my loud voice and the fact my self-esteem was affected by having been in special education for eight years. Roger could publicly speak about his experiences of seizure disorders, elopement, etc. This could help with fund raising without causing offense as we would be speaking for ourselves and not for all the autistic people that Suzanne Wright’s detractors have perceived that she has painted with a broad brush. This would help to generate much needed revenue into the organization to help find the causes of autism and a cure.

These, of course, would have to be voluntary unpaid spokespersons as it could be construed as a conflict of interest if autism speaks offered any financial incentives for autistics to speak.

Another less obvious point in favor of this plan would be that AS would be living up to it’s name and it would be actually autistics who are speaking.

One problem with this approach might be that if people on the severe end of the spectrum who could not communicate effectively were not included this would diminish the credibility of the spokespersons. Of course, AS could emphasize that if autism impacts people this mildly afflicted think of what it is like for severe persons. They could then show footage of more severely afflicted persons without any commentary and let the images speak for themselves. This would address the problems ND has had with commentary like Allison Singer’s about driving herself and her child off a bridge. Of course, they could also have spokespeople such as Dov Shestack who would not be speaking with vocalizations but using a communicator to get his point across.

I believe this addresses the problems of autism speaks’ fundraising techniques, their lack of inclusion of actual autistic people in the process, and Robison’s commentary that I don’t offer constructive solutions.

I myself have so many personal issues with autism speaks, such as their funding of Mottron, Alex Plank and the insurance mandates and their autism in the workplace program which just shows autistics working for other employers and not autism speaks themselves that I would probably have to pass on this even if someone from AS happened to read this blog post and thought this was a good idea. But I know Roger wants to be involved with autism speaks in some capacity whether or not he’s actually interested in doing what I’ve suggested. There may be others on the spectrum who might be interested in this.

One issue, I’ll concede that this does not address is the ND movement’s desire to hijack the capital of AS and use it for their own purposes, such as ASAN complaining that only 4% of funding of autism speaks goes for service-related issues rather than scientific research. However, I feel if they want funding to serve their needs they should form their own organizations and solicit funding themselves. They are free not to donate to autism speaks or any other group they don’t believe goes along with their cause.

If anyone does not approve of my idea and has a better one, then I guess they can pursue it or blog about it.