Friday, March 6, 2009

Kevin Leitch gives take on IACC strategic plan

Kevin Leitch who writes for the leftbrain/right brain blog has just given his take on the IACC's strategic plan He seems to think there are some good things about it and some bad things.

I have a couple of problems with him giving a take. First off, he lives in England and it is unlikely he has ever paid a dollar in American taxes. I wonder why it is anyone's business who has never paid taxes in the U.S.A. what a program created at taxpayer expense does . He is not the only one to do this. A couple of years ago Mike Stanton and Michelle Dawson(two other non-Americans) contacted the NIMH and gave their take on the direction that autism research should go in. I wrote about this when it happened but don't have the link handy. Estee Klar-Wolfhond (another non-American) also seems to think that she has a right to suggest what the IACC does in a letter she wrote to them with Ari Nee'man and some other persons.
I wrote about this in a previous gadfly post The second problem I have is that apparently the NDs seem to think they should take an interest in this law, though this law was clearly passed with the intention of curing and preventing autism, something they have consistently opposed.

As far as I am concerned no person who preaches a neurodiversity anti-cure philosophy has any business critiquing the IACC. If they are American taxpayers then they can write congress and attempt to have the combating autism act abolished. They then could suggest to congress that research and tax dollars be spent on the autism concerns that they are interested in. I agree they have a right to do this and try to have legislation passed that will pursue their agenda. If they have never paid any taxes in the U.S.A. as is likely the case with Kev Leitch, Michelle Dawson, Mike Stanton and Estee Klar-Wolfhond then I don't believe the CAA or the IACC is any of their business nor is any publically funded American autism research undertaking.

One of the concerns that Kev has is about the intent of the plan to prevent autism. He seems to think it is a bad idea to prevent children from becoming crippled and sick as his daughter is. I find it very hard to believe if there had been a way for his daughter to live without being handicapped that he would not want this.

Kev also seems confused as to whether or not the plan has the intent of curing autism. This should not be an issue. The IACC grew out of the combating autism act which was lobbied by Cure Autism now. There should be no question that the intent of the IACC strategic plan is to cure autism. The CAA said that one autistic person had to be appointed as one of the voting public members of the IACC. An unfortunate choice was made in appointing Stephen Shore, a member of the neurodiversity movement who opposes a cure for autism. Other than that one exception it is a pretty safe bet that every other public member and government member of the IACC is in favor of curing autism and is just as disgusted with the ND point of view as I am. This should be obvious to him, but it apparently is not.

Joseph of the natural variation blog comments on this post and puts in his $.02. He writes:

Preventing autism is something that people outside of the autism communities see as a positive. It does nothing for those of us in the autism communities. I’m sure even the anti-vaxers don’t care a whole lot about prevention. For those of us in the autistic community it’s even somewhat offensive.
Of course no one would oppose prevention of viral-cased or chemically-caused brain damage with a phenotype that presents as autism, as RAJ’s strawman attempts to suggest. I am, however, completely opposed to any type of “prevention” that involves genetic screening and abortion.

The anti-vaxers are certainly in favor of prevention, as it is their belief that taking thimerosal out of the vaccines and changing the vaccine schedule will prevent children from becoming autistic in the first place.

Joseph once again trots out the tired cliches of the ND movement. It would seem he has either not read the wording in the IACC strategic plan or does not understand its meaning.

He speaks of the "autism community" implying that people who believe in ND comprise the entire autism community but not autism speaks or most people with an interest in autism who do want to cure and prevent autism. We see this pattern of ND's trying to speak for all or most autistics or people interested in autism, when they are the ones out of the mainstream of the true autism community and are nothing but a fringe group. He also implies that prevention means abortion when it means nothing of the sort. The IACC's plan is here Here is the text that they write about prevention:

It is critical for research to identify the methods and approaches that can be used to prevent the challenges and disabilities of ASD. Additionally, if one views ASD as a biological disorder triggered in genetically susceptible people by environmental factors, then prevention can include prevention of new cases of ASD through the identification and elimination of environmental causes. What is essential for ASD research is to develop the state of knowledge to a level similar to what is now available in fields such as cardiology. No longer do we need to wait for someone to suffer a heart attack before providing life-saving treatments. Rather, early interventions are applied upon the detection of risk factors so as to preempt these more serious consequences. Having sound research on the risk factors and the environmental triggers for ASD ultimately may allow us to achieve the goal of prevention: preventing the development of the disorder in some people at risk or reducing the degree of severity in those affected.

with the talk of environmental causes and the comparisons with knowledge of cardiology, I don't see how prevention in this context can possibly be construed as genetic screenings for abortion. Leave it to the neurodiverse to misrepresent the facts.

On a sidenote the CAA and the IACC seem to be a joke in that they would appoint Steve Shore an anti-cure autistic to a board created with taxpayer dollars with the intent of curing autism. Also, the appointment of Lynn Redwood and Mark Blaxill to the board in spite of the overwhelming evidence that vaccines don't cause autism is a travesty.

Perhaps it is time for the private sector to take over as it would seem public sector funding may be keeping us in the stone age as far as advances in finding cures and prevention for autism are concerned. Of course, Autism Speaks, the main private sector funding body is probably a less than perfect organization, but I guess that will have to wait for a future post.

Addendum to post: I see that Michelle Dawson is questioning my veracity on her TMOB comment board, denying that she has contacted the NIMH in any way trying to influence the direction of autism research in the USA. In my post of October 1, I stated that she and Mike Stanton had written letters to the NIMH. I may have phrased this badly and had a memory lapse involving what had happened more than a year and a half earlier. What I was referring to was a petition that was circulated by the autism hub a little over two years ago. Mike Stanton wrote about it on his blog in a post here. This was the instance that I was referring to in my post and what I wrote on Jonathan's journal on January 8,2007. Mike provided a link to the petition, unfortunately it is broken, so I cannot prove that Michelle Dawson was one of the people signing the petition. However, I would not make this up. A petition is a letter, so though Michelle Dawson never wrote a letter that was separate from the petition per se, she still contacted the NIMH by signing that petition to the best of my recollection. If Michelle can produce the petition and prove to me that she never signed it I will stand corrected. Otherwise I still stand by my allegation that she has tried to influence the direction of research financed with American tax dollars by signing this petition.


SM69 said...

Hi Jonathan

I can’t resist making a short reply to your post. Sorry, autism is amongst us, American or not. America is in many ways a leading country. Developments taking place where you are, with regard to autism, scientifically, economically etc have major impacts on the rest of the world. That’s enough I think to justify non-Americans to take a close look at what happens in your country. And if what happens will likely have repercussions where we live, I think it’s important to report and comment on it where we are. I don’t mean the rest of the world is useless, good stuff happens in other parts of the world which Americans should also look at and comment on. It’s not like stepping into someone’s country and starting a war there to maintain supremacy. It’s about working together across nations for a common and worthwhile cause. I am French (bad) probably the worse type, but my son is American (good). I thought I should add this ;-)

Unknown said...

Hello Jonathan

I agree with you that as a Canadian I have no right to DEMAND anything from any US institution, except perhaps compliance with international law or human rights norms and areas where they impact seriously on other nations and their citizens.

As SM69 mentions America and American institutions exert great influence in the world, especially here, next door, in Canada. Generally that American influence has been very positive on autism issues. We have benefited from American autism research and the positions taken by American agencies. In Canada federal politics dominates autism research and has a negative effect with anti-cure researchers like Dr. Laurent Mottron and his mentor Michelle Dawson receiving research funding, repeat high profile appearances on the CBC, Canada's national publicly funded broadcaster, and prime spots at a politically shaped National Autism Symposium. Personally, I place great value on AMERICAN research institutions and public health agencies and what they have contributed to autistic persons and family members. I generally find them more credible than our current Canadian CIHR which appears to follow marching orders from our current Prime Minister's Office.

I see no reason why anyone, regardless of where they live, or their citizenship can not comment on any subject they wish to comment on. Specifically I see nothing wrong with anyone, including Michelle Dawson, expressing their opinion to an American agency particularly if they indicate that they are NOT US citizens. And I doubt American authorities take her as seriously as some Canadian authorities seem to do.

On the "merits" of Mr Leitch's opinion he does appear, once again, to try and suggest that his small club of neurodiversity advocates have the right to speak on behalf of all autistic persons including autistic adults like you and autistic children like my son.
You have made clear your position in that regard. And I can say clearly on behalf of my son that Mr. Leitch does not speak on his behalf. The animosity present in many internet autism discussions would decline markedly if neurodiversity advocates like Mr. Leitch ceased such over reaching.

Mr. Leitch is entitled to believe that he should not be cured of any disorders which might affect him personally. But he has no right to misrepresent his irrational anti-cure ideology as being the views of "the autism community:.

My initial review of the IACC autism research plan is that it looks very balanced and inclusive of diverse opinions on research directions. Offered as a Canadian with no right to demand any specific direction on the part of the IACC but very much affected by whatever direction it takes.

I appreciate your views Jonathan, even where we disagree, as we do on ABA and on the right of foreigners, like me, to comment on actions taken by American authorities.

Anonymous said...

He speaks of the "autism community" implying that people who believe in ND comprise the entire autism community but not autism speaks or most people with an interest in autism who do want to cure and prevent autism.

You're just being completely dishonest there, Jon. It was very clear I wasn't using "autism community" that way. In fact, I used the phrase "autism communities" precisely because everyone knows that "autism community" has been co-opted by the anti-vaxers.

Now, autistic community is another matter entirely.

jonathan said...

Joseph, just because you used the plural autism communities, rather the the singular autism community, does not make a difference. You are still implying that the Neurodiversity movement represents something other than a complete fringe point of view. I won't accuse you of deliberate dishonesty as you have done to me, but only that your view is not at all accurate. I stand by my statement that most persons who have an interest in autism are in favor of prevention (not abortion) of autism and would like a cure for autism to be found. ND just represents a very small percentage of those people.

jonathan said...

For those of us in the autistic community it’s even somewhat offensive.

After re-reading Joseph's statement he does indeed use the singular in trying to speak for everyone, after using the plural in one of the previous statements of his comment. So in addition to my previous response to Joseph, the point still stands.

Anonymous said...

I didn't even imply that "prevention" necessarily involved genetic screening. I thought that was clear when I noted that I wouldn't oppose certain types of prevention.

You completely misrepresented nearly everything I said.