Wednesday, November 13, 2013

John Robison resigns from autism speaks and invokes Harold Doherty's "royal we"

In the occasionally some news is good news department, Gadfly is happy to report that neurodiversity proponent John Elder Robison has tendered his resignation from the scientific advisory board of autism speaks.  It was in response to this op-ed piece that autism speaks founder's wife, Suzanne Wright wrote.  Even though Ms. Wright made the fallacious statement that three million children had autism and ignored the adults such as myself, she did make some good points about the angst that family members of autistic children go through.

Robison accepted a position on Autism Speaks' scientific advisory board apparently believing in the old saw that it's more effective to piss inside the tent than outside of it.  Much to his disappointment, autism speaks did not do a 360 degree turnaround and become a neurodiversity oriented organization or at least an organization that would totally cater to his point of view. 

In response, he wrote a letter of resignation to AS president Liz Fields.  He wrote:
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I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people. We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people.

Renowned blogger Harold Doherty first wrote of the tendency for extremely high functioning persons on the spectrum to speak for all autistics on planet earth.  He referred to this as "the royal we". What right does Robison have to speak for 100% of us.  He doesn't speak for me and I suspect at least some others on the spectrum, so what right does Robison have to use the royal we.

Robison speaks of perceived needs: 

Unfortunately, the majority of the research Autism Speaks has funded to date does not meet those needs, and the community services are too small a percentage of total budget to be truly meaningful.

Robison should have realized that autism speaks was primarily designed to be a funder of scientific research to study the biology of autism in the hopes of finding treatments and even possibly the cure that he opposes.  It was never their intention to engage in mass funding of community services.  In fact, Cure Autism Now, one of the organizations that merged with the National Alliance for Autism Research to form autism speaks, had as its bylaws that they would only fund medical research.  Robison accepted the position on the scientific advisory committee not something meant to fund community services, even if it was his intention to turn this around.

Robison continues to go on, implying that the majority of adults oppose autism speaks' goal of curation and also how there are no autistic voices in autism speaks and the organization is only for parents. 

Yes, autism speaks was formed by parents who make decisions on treatments for their children.  That is a fact of life.  I am not opposed to having actual persons with autism do some sort of work within autism speaks.  I'm gratified they have Kerry Magro in their employ.

I'm not in favor of having someone who dropped out of the tenth grade serve on a science advisory board.  I'm not in favor of someone claiming to be on the autism spectrum yet who states that he does not have a disability serving on a board, claiming they are a stakeholder, when in fact they have no true dog in the fight. I don't understand how Robison's psychologist friend could have diagnosed him in good conscience when he has stated he has no disability.  I'm not in favor of having neurodiversity proponents serve in an organization whose stated philosophy is that autism is a disease that needs a cure. 

I'm glad Robison is no longer affiliated with autism speaks.  I realize it does not change a whole lot, but at least it has positive symbolic overtones. 

I hope the next step would be for Alex Plank and Robison junior to no longer accept funding from AS for autism talk TV or hopefully AS will have the good common sense to terminate funding for that endeavor. 

The government has also stated that they wish to cure autism vis a vis the combating autism act.  I guess they have not written an op ed piece that offends Robison enough so that he'll resign from the IACC and from the NIMH research panel which reviews research.  I wish he'd exit those posts also but I guess I shouldn't get my hopes up too high. 
 


 




8 comments:

Anonymous said...

How could anyone seriously believe 'charities' such as Autism Speaks are really all about curing autism, as 1 must ponder the possibility of those such 'charities' of un-official channels to do the research for Uncle Sam for purposes concerning war & enemy neutralization, as it has been alleged the late Hugo Chavez of Venezuela died due to some kind of biological warfare. All those charities funded by the government are really thinly disguised agencies for which the U.S. government can do its diabolical research @ minimal or no cost for itself. I bet you 10-1 the government knows surely far more about the causes of Autism & a bunch of other diseases & disabilities, or even their alleviation than they are letting on. Uncle Sam doesn't care, the american medical system doesn't doesn't care, nobody cares.

Roger Kulp said...

I think this is article by Suzanne Wright is pretty good.It adresses two of the most serious problems I see as far as autism is concerned,medical problems and wandering or eloping.You never seemed to have this problem,but for me the two were closely related.I used to have seizures,that led to blackouts.During these blackoutsI would wander with no idea where I was or what I was doing,only to come around,with no idea how I got where I was.I would walk down busy streets,or wander in the woods,anywhere.Often I was picked up by police,who did for my own safety.Like my head banging,this on,until I started on leucovorin in 2009.I would still be very autistic,and doing both,and a lot more,even at my age,if my folate problems had not been found.And,yes,I pretty much have a definitive diagnosis now.Combined cerebral folate deficiency,and severe MTHFR deficiency.

I wonder if this means that Autism Speaks is finished with trying to make nice with,and accommodate neurodiversity.That would definitely be a step in the right direction.

I also wonder if this means there is vacancy on the Autism Speaks board.I would like to be on it.I am not a high profile person like Mr.Robinson.I haven't written bestselling books like he has,but no one has the unique experience I do.

Because of my experiences,I am far more interested in the medical and biological aspects of autism,rather than things like jobs and social services.I also know a lot about it.

I plan to start contacting people at Autism Speaks,to see if I could possibly take Mr.Robinson's place.

If this is any indication of a change taking place at Autism Speaks,it may mean they simply would no longer offer any money or support to anybody who is against cures or treatment for autism.

The next step would be for Ms.Wright to come out and publicly denounce neurodiversity.

jonathan said...

Roger, you can contact autism speaks and inquire about being on a scientific advisory board. If you completed the tenth grade in school your educational qualities are superior to his.

The problem is, as you said, you are not a high profile person with autism. Autism speaks is most likely interested in being associated with celebratory autistics like Robison, who, in their perception, might improve their bottom line and help get donations.

Most parents of autistic children are too busy to read blogs. They are busy fighting for services and treatments for their children. If they had read some of the stuff about Robison implying he knew what was better for their kids than parents did or his comments that only an autistic person should decide whether to receive treatment and their parents should not decide, their knickers would have undoubtedly been in a twist and his association with AS would have be a liability and a detriment to them instead of an asset.

However, Robison does have his fan base and I guess he may have helped bring money into the organization.

I'm really not in favor of non scientists serving on those boards, but I know how you feel and I feel the same way.

Unlike Robison, you and I actually have a dog in the fight and have a good reason for wanting science to advance to help people such as ourselves.

I wish you luck in any future endeavors you might have, but don't count on a warm reception from anyone at Autism Speaks as far as being on any advisory boards.

Roger Kulp said...

Those are a couple of interesting points about Robinson,but why would he accept a position at a foundation who is devoted to curing or treating autism? And on the very board that is devoted to finding treatments for autism,and is made up of mostly doctors,of all things.

I have watched one of those IACC videos,where doctors,like Richard Frye,sit around a table,and discuss current research,with Robinson there,and it's obvious he doesn't know the first thing about this stuff.Again,what is he doing on the IACC,when they are all about finding cures and treatments for autism?

If these positions were offered him,why did he accept them?

I think I'll go over to his blog,and ask him this.

Anonymous said...

" We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people.'

"We" are the high functioning that can understand words and emotions,"We" are not the ones that rely upon the state and the good intentions of others,"We" are not the ones with little language and no bodily function control, "We" are not problems for our parents or society because "We" aren't autistic.

jonathan said...

Those are a couple of interesting points about Robinson,but why would he accept a position at a foundation who is devoted to curing or treating autism?

That's a good question. I'm not sure of the answer to it, but I can speculate that probably part of the reason was he felt that it could generate publicity for him and improve his book sales, not to mention his speaking fees and engagements. From what I understand,(though I'm not certain) he makes an income well in the six figures from speaking fees alone.

Again,what is he doing on the IACC,when they are all about finding cures and treatments for autism?

That's also a good question that I'm not certain of the answer to, but I suspect from Robison's POV, again it helps improve his public image and bottom line. He may actually have some good intentions and feel that he can change the IACC and the stated with emphasis on stated government policy of combatting autism and curation. As far as the government is concerned, it is just typical government incompetence and bungling and not really having to answer to. The same thing is going on with the affordable healthcare act and the abysmal roll out and website. These things IMO are better handled by the private sector and I don't believe the IACC should exist (though organizations like AS admittedly have not done much better)


I think I'll go over to his blog,and ask him this

excellent idea. He states that he gave up on dealing with me because of my constant criticism of him. Hopefully he would not feel the same way about you and I hope he gives you some good answers.

Shanti said...

Good points! the blogesphere went nuts with parent blogs that were offended by Katie Wright's piece calling her dangerous and misguided. Mainly they were saying "This is not our autism." Fair enough, not everyone experiences autism as she describes in her piece. However, When the happy, feel good stories come out in the media, there is no expectation that there be a footnote saying "Results not typical" or "Many people with autism have lives far more challenging than this piece represents." They are not offended at the misrepresentation under those circumstances. Your piece adds another point for the "You do not speak for me" crowd. John Robinson if Katie Wright doesn't speak for families of autistic children, then you can't speak for people with autism. Good riddance John!!

Shanti said...

Roger - Please do ask Autism Speaks to put you on their advisory board. I think that would be great! They need someone who understands what it is like to actually have autism (or be autistic) and experience bio-medical treatments! High profile schmofile! I want you on that board!