Wednesday, March 10, 2010

Autism Speaks Rejects Questions About Views of New Board Member Robison

I have been appreciative of much of the work done by Autism Speaks in raising autism awareness and funding for autism research. I have also found some Autism Speaks decisions questionable. In particular, I disagree with Autism Speaks decision to provide research funding to Dr. Laurent Mottron who is ideologically opposed to curing autism and who works with anti-ABA activist Michelle Dawson. Reacting to criticism that Autism Speaks does not have a person with Autism on its Board Autism Speaks has responded by appointing a very high functioning person with an Aspergers Diagnosis. The appointment of a person with Aspergers to me represents exactly that ... the appointment of a person with Aspergers not Autistic Disorder not severe autism not low functioning autism.

I am concerned that Mr. Robison and Autism Speaks will, contrary to the wishes of many families with children with Autistic Disorder, move its autism research spending in a more anti-autism cure direction. I am concerned that, with its powerful media connections,  Autism Speaks is moving toward adopting the anti-cure positions of some "Autism" self advocates with Aspergers and High Functioning Autism at the expense of persons with low functioning Autistic Disorder. Autism Speaks has already cowered before  those who view autism as a "different way of thinking", those who oppose research aimed at curing  autism by disassociating itself as much as possible from the "I Am Autism" video produced by parents of autistic children.

I posted a comment on the official Autism Speaks blog guest blog from Mr. Robison asking two questions. The comment did not pass moderation and does not appear on the Autism Speaks blog site. This was the comment I posted:

Mr. Robison do you feel that as a very high functioning person with an Asperger's diagnosis you have any particular insight to offer on behalf of very low functioning persons with severe Autistic Disorder or should the persons who actually care for them and have legal guardianship speak on their behalf?

If I may ask a second question, do you support research aimed at finding cures for autism?

I do not object to the right of Autism Speaks to moderate comments on its official blog site. I moderate comments on this site to prevent spam, profanity, abusive, offensive language and off topic comments aimed at disrupting discussion.  I thought my comment questions were fair and reasonable in the context of Mr. Robison's guest comment introducing  himself on the Autism Speaks blog and I do not see anything offensive or disrespectful in my comments.  Apparently Autism Speaks disagreed.

I respect Autism Speaks' right to moderate its blog site and to reject my comment.  I am not going to throw a hissy fit over Autism Speaks decision to reject the questions I posed for Mr. Robison.

I will take it  though as a sign, a bad sign, about Autism Speaks willingness to address openly some of  the issues that concern me as a parent of a  low functioning  son with  Autistic Disorder. 


Lisa Jo Rudy said...

wow, Harold - I had no idea they censored reasonable comments and questions to that degree... though I've never gotten good answers to my own questions (never got past the media gatekeepers).

while I am pleased rather than displeased about John's appointment (glad to see someone on the spectrum finally represented!), I am very concerned to hear your comments were simply moderated out.


jonathan said...

Actually though I don't have full answers to your questions from Robison's point of view as I am neither him nor can I get inside his head. You might want to read my most recent blog post on autism's gadfly and also you might find some comments to me from Robison there if you look hard enough.

It does not look good:

In answer to your first question Robison expressed concern about the fact that treatments might be forced on autistic people who don't want them. This shows to me he is not cognizant of the fact that parents make decisions for their children or lower functioning persons might be under a conversatorship.

In response to question number two, I don't know if you have ever read Robison's book "Look me in the Eye", but on page 5, he states that there is no need for a cure for Asperger's syndrome. How he feels about a cure for other autism spectrum disorders is not entirely clear to me, but it would seem that Robison might say a cure for those is not necessary also.

Anonymous said...

I don't have much faith that he will do anything effective over at Autism Speaks. He does not represent my child and seems to be all about publicity, which is a perfect match for A.S.

autismspeaks said...

Dear Harold,

Yes, all comments posted to the blog are moderated. We try to approve comments as quickly as possible, but those posted in the evening and at night are often not approved until morning. That was indeed the case with your comment. I apologize that your comment did not go live until this morning, but it was certainly approved within the batch (of 15 awaiting moderation).

Jennifer Parsons

john said...

Harold, You never mentioned when you posted the questions. I am going to give them the benefit of the doubt but if your questions are not published and answered in a few days, then i will assume they were rejected and that says a lot to me. I do agree that I have seen some shifts in the 'anti cure' philosophy and it makes me very uncomfortable.

John Elder Robison said...

Harold, your question did appear on the Autism Speaks blog, as did my answer. The blog is moderated so maybe it took a while to appear but I saw it about noon and responded a soon as I could.

I will repeat here that I am fully aware of the degree of disability some people with autism live with and I fully support research that may lead to remediation of that disability. I don't term that a "cure" but you may feel that's a matter of semantics.

You asked if I felt "qualified" as compared to a caretaker, and I responded by challenging the motives of caretakers which are often less than pure. While I believe that to be the truth, I want to stress that I do not direct that at you personally; I just wanted to point out that my own experience with caretakers (I had them as a kid at times) was very mixed as was my brothers.

Be assured that I will not censor your questions to me, but I don't control the moderation system nor do I (yet) get email advice of responses and it may just take a while for me to respond.

Best wishes

Kathryn said...

A man that Kim Sagliano considers to be a good friend - is okay by me.

A man that goes out of his way to share his experiences with TMS has got to be a creative thinker who is willing to investigate alternative approaches to treating his own autism.

Sounds like just the person we need to represent our dear family members.

Go John Go!

MariposaXochipilli said...

It is disheartening that some feel only the severest manifestation of autism is 'true autism'. That makes no more sense than to say a woman in her first trimester of pregnancy isn't really pregnant because she doesn't show.
Whether they be high or low functioning, it is my experience that all people who've been diagnosed with autism prefer to speak and communicate for themselves; some do so quite well. Because others don't understand doesn't the person with autism isn't communicating or is incapable of comunication.
My three children are all autistic, yes, they are higher functioning than some, but all people respond at the level they are being treated. My son is an Eagle Scout who graduated on the Honor Roll. One daughter is a published poet who writes eloquently from the autistic perspective. My other daughter had a drawing included in a worldwide exhibition of children's art and spearheaded a project that has helped over 1,400 impoverished/hospitalized children in four nations.
They shouldn't be 'cured' they should be cloned!
For those of you who will say, good for your children, but my child can't do that, I'd like to point out that you are unintentionally anticipating failure ... your child knows that. My husband and I were helping at a special Olympics bowling event nearly 3o years ago. There was one young woman who was non-verbal and non-reponsive at the beginning of the day. By the end of the day, she'd get up when it was her turn and scoot the ball down the lane after nothing more than a glance of acknowledgement ... which SHE initiated. He family was in tears because they had been told she'd neve be capable of such independent interaction.

Autism Reality NB said...


Before I retired last evening I checked the AS official blog site and it indicated my comment was awaiting moderation. This morning the comment was no longer described as being in moderation and was not posted on the site.

Thank you for clarifying and for posting my comment.

Autism Reality NB said...

John Elder Robison

I did not ask whether you were "qualified". I asked "do you feel that as a very high functioning person with an Asperger's diagnosis you have any particular insight to offer on behalf of very low functioning persons with severe Autistic Disorder or should the persons who actually care for them and have legal guardianship speak on their behalf?"

I think it is unfortunate that you would challenge the caregivers of persons with legal guardianship of persons with severe Autistic Disorder as a class of persons.

Obviously there are some caregivers who are motivated by other than the best interests of the severely autistic persons in their care. Every group in human society, be they groups of caregivers, lawyers, doctors, priests, educators, business persons, adjunct professors at colleges and members of charitable boards has some elements with improper or selfish motivations.

The issue is who should speak for a person with severe autistic disorder who can not speak for himself/herself, whether a parent, family member or other person with legal guardianship of a person with severe autistic disorder should speak on behalf of that person or whether a person with little in common with that person, no actual knowldege of that person and no direct personal responsibility for his or her care should speak on their behalf.

On the second issue you simply avoided answering the question.

Do you agree with remediation of autism to the extent of curing the autism disorder should such a cure become available? To that end do you support research aimed at curing autism disorders>

Autism Reality NB said...


I asked Mr. Robison questions on important issues relevant to the interests of my son with severe Autistic Disorder.

You can have John Robison represent your interests if you wish. And you can do so without asking what his views are on matters important to autistic persons if you wish.

Autism Reality NB said...


I made no comments about "true" autism.

I asked questions of Mr. Robison related to his ability to represent persons with severe Autistic Disorder. Mr. Robison as I understand from the media does not have an Autistic Disorder diagnosis and from his very impressive accomplishments is not severely affected by his condition the way my son is in the way the severely autistic persons living in institutional care are affected. And I have actually visited institutions and met some of those living in institutional care and reviewed their living conditions.

John Elder Robison said...

Harold, I thought I answered your "cure" question pretty clearly, but since that answer was unsatisfactory I will have another go at it.

Autism is the result of a number of configuration differences in our brains. Recent research suggests those differences may come about at an early age due to differences in brain plasticity.

However they come about, those differences are instrumental in forming our personality - the core of who we are - as well as various components of disability.

Science is nowhere close to showing us how to unravel that package of differences. That's what I meant by science fiction.

When attacking the autism riddle, researchers don't say "we want to find a cure." They say something much more specific, like "we want to improve language comprehension."

"Autism" is not a research target because it is far too broad and ambiguous. Speech impairment, social skills, GI issues . . . those are examples of things we target in the quest to make people's lives better

I support research aimed at finding ways to remediate our disability. If you want to interpret that as "anti cure" or anything at all, that's your business, but it's not what I said or meant.

Autism Reality NB said...

Mr Robison you can have as many goes at it as you wish but I am comfortable that I have interpreted your statements accurately and fairly.

You oppose funding for autism research aimed at finding cures for autism disorders.

You do not believe that autism could or should be cured.

If you disagree with those statements you are free to say that so but here is what you did say in your response to me on the Autism Speaks blog site:

The same reader asked a second question: Do you support research aimed at finding cures for autism?
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.” 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."

Thank you for offering your perspective as a high functioning person with Aspergers Disorder in your comments on this site.

As you may, or may not, have read on this blog site my son is much lower functioning than you and he has an Autistic Disorder diagnosis. I know him and you do not.

I realize no cure currently exists for autistic disorder. That does not mean that research to find a cure should not be funded. As to the lack of any research to date you must know that funding of environmental causes or contributors to autism research has been actively discouraged for over a decade. That has even been acknowledged of late by the IACC. If you don't know where to find that information on the IACC web site let me know and I will assist you in finding it.

As for brain structures and autism I am aware of some promising research in areas like under connectivity and over connectivity of synapses and processes in the brain. I have no idea why you have concluded that research of that nature could not result in cures or to use your tap dancing terminology full remediation for autism.

Anonymous said...

I also do not think Robinson should represent my daughter. High functioning autism or Asperger's is not even in the same class as low functioning autism and John Robinson has no clue what parents and children go through with this disorder. I am also really sick of parents of children with Asperger's whining about how their son/daughter is a little "off." Yeah, if only most severely challenged kids had such issues! They have no idea what we live with everyday.

Anonymous said...

Here's where the problem lies. This mom is very good friends with John Robinson. So much so he helped raise money with other moms to buy this child a very expensive service dog. The mom then takes the child out of school because NO ONE is good enough to teach HER child so she does not even need the dog since it was supposed too help her in social situations in school. The child is VERY high functioning yet the mother bitches endlessly about how difficult life is. Sure. Come live with a low functioning kid for a few days. These parents and Robinson should NOT be speaking for our kids.

Anonymous said...

John-you clearly don't believe in a cure and see no need for one. As a parent I see you are just another hack who will do zero for our children at Autism Speaks. People like you hinder the progress for our kids. Stop tooting your own horn and looking for the limelight. You will never represent the voice parents need.

john said...


your kidding right? At first I actually thought you were being serious with your YOu got me.

But then I thought, there is no way she can actually be serious.

Great post, you almost got me.