Thursday, March 11, 2010

Autism Speaks Welcomes To Its Board Autism Cure Opponent John Elder Robison

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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9 comments:

Claire said...

"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."

This has to be one of the most offensive statements I have ever read in disability land. Such arrogance! Such ignorance of the realities of people caring for those severely disabled. I am too angry to say anything productive at this point. I sense a post of my own coming on.

jonathan said...

This is nothing new from autism speaks. Before Robison was appointed to the board he is going to serve on, they funded Laurent Mottron whose anti-cure views are even more extreme than Robison's. In addition to the fact that Michelle Dawson who states that people who raise money for autism speaks 'make her sick' is getting money from AS also due to her association with Mottron.

Robison's appointment in terms of policy and where funding go has no relevance as he is only one vote out of more than 30. I doubt very much that he will have any clout there. His appointment is merely window dressing for political reasons.

Anygma said...

wow, that's a steep step for Autism Speak. since when a young child is better equipped then his parent to know what's best for him and his interest?

my son nearly got hit by an SUV this weekend because he rushed ahead of me insisting he know how to cross the road. when i pulled him away from the incoming vehicle, he was adamant that he looked well both ways. sure we can allow them to be right! and dead too!!! now that's real caring compassion, right?

if Autism Speak stop believing in the possibility of a cure or betterment, i think they are losing their voice.

ian MacGregor said...

Amazing! Someone who has never met a child thinks they can better make decisions concerning that child than his parents who have been with that child his whole life.

From where does such hubris emanate?

Stephanie Lynn Keil said...

I have actually found John Elder Robison to be one of the saner Neurodiversity voices which is why he was probably able to get his spot at AS. He has always been polite to me and able to engage in civilized discussion without resorting to name-calling.

He might be "anti-cure" but he is not "anti-cure" enough for ASAN as they have complained about JER being appointed to the board of AS. JER supports ABA and other therapies that many ASAN supporters disapprove of. JER also supports genetic research.

And JER also believes that the majority of funding should go towards finding new therapies rather than to communities because, according to him, finding an effective therapy can help millions more rather than helping a few in a small community.

We may disagree (we all do) but he is not as bad as most who support "Neurodiversity." If ASAN doesn't want to even be associated with him than he must be okay.

I also love that ASAN has complained about an autistic person finally being appointed to AS after all of that protesting and complaining they have done against AS. But it wasn't the autistic person they wanted!

Boo-hoo.

john said...

"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?"

YOu know what john, go ahead, tell me what is best for my son?

let me guess, you never met him so you can't really say. And that my friend is why I am more qualified to speak on his behalf then you.

"Caretakers all too often have their own agendas at odds with the people they supposedly care for. There is always the temptation to do what’s easiest for the caretaker rather than what’s best for the care-taken person."

I am with claire, can anything be more offensive then this statement. So John, since you clearly know me pretty well, what would be my agenda on taking care of my son? Do you think I want to read a newspaper?

you know what? Your right. Maybe every once in a while, I would love to sit down with a big cup of coffee on Sunday Morning without being disturbed, and read the newspaper.

But then again, I come from the place that if you do not take care of yourself then you really are no good to anyone else.

I am a little confused by this offensive statement and hope that I am reading it wrong.

excuse me for the tone of the message. I didnt have time for a cup of coffee today, never alone sit and read the newspaper.

Chris said...

I am confused about why you have such concerns about John Robison being appointed to the board of Autism Speaks.

As far as I can tell, your concerns are:

(1) John is high functioning and cannot speak for those on the lower end of the spectrum.

Is it Autism Speak's mission to only represent those on the low end of the spectrum? As far as I can tell, they strive to serve all people with autism spectrum disorders.

(2) You feel this might signal a departure from Autism Speak's mission of dedication "to funding global biomedical research into the causes, prevention, treatments, and cure for autism"

You cut off the next part of their mission, which states "increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families"

John is more than equipped to do that very capably.

(3) You state John is anti-cure.

You grossly misrepresent his position, which is balance. He states "One of my principal areas of concern will be identifying and funding studies that have a high likelihood of improving the lives of autistic people today. Research into causes of autism is important, but I want to see more research aimed at remediation of specific components of autistic disability."

I believe he should be using the words "autism spectrum" rather than autistic, but I believe it is clear he is not speaking for people across the spectrum.

Ari Ne'eman is certainly anti-cure. I don't see how you can construe John's beliefs as anti-cure.

John states, again on the blog you mention, "When the Wrights founded Autism Speaks their focus was on children with significant autistic disability. While that remains important, I hope to broaden the organization’s focus to welcome and support less impaired people too."

Again, this speaks to balance, inclusion, and broadening support for all on the spectrum.

John answered your questions, but you didn’t answer his, which was "I have said more than one that I support any research that leads to removal of your child’s disability. Isn’t that your goal, too?"

I am concerned you lump John Robison in with Ari Ne'eman. Their views and actions couldn't be more different.

John has held many jobs and performed them very capably. He has formed long lasting relationships and married. He has supported himself and a family. He has formed a business and employed others. He works with others to broaden awareness and improve the lives of others. As far as I know, Ari has done none of these things.

Ari has launched hurtful personal attacks against those he disagrees with, such as Tony Attwood. John has never acted in this manner. Ari is against a great number of things, but I have had difficulty determining what he is for. John is working for very positive ways to improve the lives of those of us on the spectrum.

I would have expected better from you than to compare them as if they hold the same views.

You mention you want confirmation as to whether Autism Speaks will continue to raise funds for research aimed at curing autism.

Autism Speaks is now fundraising in British Columbia. Our current concern is our provincial government has cut funding for early intensive behavioral intervention. That concerns parents of children across the spectrum. If it was a choice today between money raised in BC going to research for a cure, or advocacy to restore this funding, I can tell you which parents here would vote for.

Chris.

Asia G said...

Is everyone here looking for a cause and a cure?

Also, who here believe Autism Speaks is an "advocacy" organization?

I agree they are a science and research organization but they are not an advocacy organization from what I have seen.

Autism Reality NB said...

Chris (Blogger profile not available)

I believe you are being disingenuous with your claim that you are confused.

1) I have no objection to a person with a high functioning autism disorder or Aspergers being on the AS board. I object to the assertion as AS has done, that he represents the autism spectrum ... which includes the severely autistic.

2) John Robison does in fact oppose the concept of curing autism and opposes using autism funding to back autism cure directed research and I have backed up these points by reference to his comments to me:

1. Autism consists of structural differences which are not diseases in need of a cure:

"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."

2. Autism, consisting of structural differences, should not be cured and the concept of changing those differences is science fiction:

"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."

3. Autism research funding should not be spent on cure oriented autism research:

"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.”

Remarks in quotation are from John Robison.