Autism Speaks has responded to my comment concerning publication of my comment on the
official Autism Speaks blog site about the views of new Autism Speaks board member John Elder Robison. AS did, subsequent to my initiial comment on this site, post my questions to new Autism Speaks board member John Elder Robison. Mr. Robison also answered very honestly my questions on the Autism Speaks blog although I am very concerned about what his answers portend for the future direction of Autism Speaks.
Mr. Robison is a very high functioning person with Aspergers Disorder of whom Autism Speaks per Dr. Geraldine Dawson has
announced:
"
It is essential that our grant funding reflects the needs and perspectives of the community we serve, namely, people with autism spectrum disorders. We are very pleased to welcome John to our scientific review boards. His insight and skills will prove invaluable."
Mr. Robison is, like Ari Ne'eman, a very high functioning person with an Asperger's Disorder diagnosis. Autism Speaks, as stated in its announcement, feels that Mr. Robison's Aspergers condition permits him to offer insights on behalf of all persons with autism spectrum disorders. The autism spectrum, at least until the DSM 5 comes into effect, includes low functioning persons with Autistic Disorders. At least 75-80% of persons with Autistic Disorder have been estimated by credible studies and agencies such as the Canadian Psychological Association and the CDC to have an Intellectual Disability. How the unquestionably talented and very intelligent Mr. Robison will offer insights into the life challenges, needs and perspectives of those with Autistic Disorder is not explained by Autism Speaks and is not a proposition that I accept as the father of a son with severe Autistic Disorder. Of course, from Mr Robison's perspective he is better suited to represent my son's interests than I am as his father.
On the Autism Speaks official blog site, where Mr. Robison was featured as a guest commentator, he stated:
"I guess I’d counter with a question of my own. What makes you think a person who cares for a disabled autistic person is better qualified to speak on their behalf than me, a high functioning autistic individual?
Caretakers all too often have their own agendas at odds with the people they supposedly care for. They want to read a paper; their charge wants to keep practicing. There is always the temptation to do what’s easiest for the caretaker rather than what’s best for the care-taken person.
There are so many cases of caretakers abusing or neglecting their charges and forcing unwanted therapies on disabled people that I would not be so quick to assume caregivers should have the exclusive right to speak on behalf of the disabled.
That said, I know there are many loving caretakers out there who are truly in tune with what their disabled charges want and need. I would give considerable weight to their opinions if I were in a situation where that was appropriate.
But that is not what I joined the board to do. I am not there to judge anyone else, or speak on anyone’s behalf. I am there to render my own perspective on proposed scientific research and treatments studies, as an autistic person at my particular level of functionality.
A better question to ask might be: Should Autism Speaks seek individuals with a greater degree of autistic disability to serve beside me on these boards. In my opinion, the answer to that is yes and I hope to see that achieved in the future.
The same reader asked a second question: Do you support research aimed at finding cures for autism?
All of the science to date says autism is founded in structural differences in the brain. Differences are stable things. They are not diseases in need of a cure. Taking away the difference is – to me – tantamount to changing to another person. In any case, the idea of such brain configuration is in the realm of science fiction today.
Having said that, I am well aware that autism presents some of us on the spectrum with virtually insurmountable challenges from crushing levels of disability. Others – like me – grow up with milder but still significant components of disability. As much as I recognize my own unique gifts I never lose sight of the “hard parts;” the reason autism is a disability condition.
That is precisely the reason I joined the Autism Speaks boards. I want to bring my autistic perspective to the boards that choose how to allocate our limited research dollars to the best benefit of people living with autism today.
For that reason I fully support research to develop ways to remediate the things that disable us. For example, I have written extensively about research I’m involved with that’s aimed at minimizing social disability by helping us read nonverbal signals that we were previously blind to. I am working with the scientists at Beth Israel Deaconess to develop a study to improve language comprehension and expression in people with autistic speech impairments. I support research to help alleviate the gastric distress that plagues many of us.
However, none of those things are “cures for autism.” They are studies aimed at attacking specific challenges autism presents us. While I have high hopes that we can remediate certain autistic disabilities, I believe our underlying autism will remain. I am not aware of any proposed research that can change that reality.
That’s where acceptance comes in. I want therapies that can help free people from disability. At the same time, I believe we have the right to be recognized in other ways as different but equal in larger human society. Through the efforts of Autism Speaks and all of us within and without the advocacy organizations I hope to see that goal furthered as well."
Without responding, at this time, to all of the points raised by John Elder Robison in his reply to my questions I do thank him for stating clearly and honestly that he is opposed to research aimed at curing autism. And he does pay lip service to representing the perspective of an "autistic" (Aspergers) person with his particular level (very high) of functionality) he does not restrict the content of his views to that perspective. He does not, for example, oppose allocation of research funds for curing Aspergers Disorder alone; he opposes allocation of research funds aimed at curing autism a concept which he derisively dismisses as science fiction.
To the parents of severely autistic children who are seeking autism cure oriented research from Autism Speaks Mr. Robison has an answer. Hey, some parents and caregivers do not act in the best interests of their charges, their children in the case of parents. Therefor better to let John Elder Robison who doesn't actually know your children or charges, who doesn't share their condition speak on their behalf.
The primary concern I have with Mr Robison's views is his opposition to research aimed at curing autism. If those are his views then it is a clear indication that Autism Speaks will not be using the research dollars that it solicits, including the money solicited from parents of severely autistic children, to back cure oriented autism research.
For now at least the Autism Speaks official web site under
Autism Speaks History still describes itself as an organization dedicated to finding cures for autism disorders:
"
Autism Speaks was founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism. Since then, Autism Speaks has grown into the nation's largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatment and a cure for autism."
In the section titled Our Mission Autism Speaks states"
"We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism"
It is difficult for me to understand how the mission of Autism Speaks to fund research into curing autism disorders can be reconciled with the views of its new board member and scientific and research advisor that autism can not, and should not, be cured, that the idea of curing autism is ... science fiction.
Hopefully, in future news releases, Autism Speaks will confirm whether it will, or will not, continue to raise funds for research aimed at curing autism. Hopefully they will do so before they ask members of the public, including the parents of autistic children that AS Board member Robison holds in such low esteem, for contributions.
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