Wednesday, June 03, 2009

Autism Can't Be Cured Dr. Mottron Takes Autism Speaks Cash For Research

In Why would autism speaks give Laurent Mottron half a million dollars? Autism's Gadfly, Jonathan Mitchell, has highlighted the award by Autism Speaks of almost half a million dollars in autism research funding to Dr. Laurent Mottron. Jonathan has some serious questions about the grant to Dr. Mottron by Autism Speaks, an organization that states on its web site that:

We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism;

Dr. Mottron is an autism expert who does not believe that autism can be cured. He is referred to as Dr. M by the Canadian Human Rights Tribunal that heard the discrimination complaints of his colleague and mentor Michelle Dawson in Dawson v CPC. In that case the CHRT described Dr. Mottron's expertise:

b) The testimony of Dr. M

[99] At the beginning of his testimony, Dr. M., who is a psychiatrist, was qualified by the Tribunal as an expert in autism. Dr. M. filed a report as well as three letters pertaining to Ms.Dawson’s condition.

[100] Dr. M. testified on the nature of autism, autistic individuals as well as on Ms. Dawson’scondition. The credibility of Dr. M. as well as the accuracy of his statements and opinions was not challenged by the Respondent. The Tribunal finds Dr. M.’s testimony highly credible even ifthe evidence shows that in recent years, Ms. Dawson has worked with him and has co-authored scientific articles with Dr. M.

The Tribunal did not mention that in addition to cooperating with Ms Dawson on scientific articles he has also assisted her with her "autism" activism. In the Auton case Dr. Mottron supplied an affidavit in support of her application for intervention in the course of which she opposed funding of ABA treatment for autistic children. The good Dr. Mottron has also appeared with Ms Dawson on numerous CBC features from En Jeux to Quirks and Quarks to the feature "Positively Autistic". In the last feature in particular some very high functioning autistic persons and persons with Aspergers declared made it known that "we" don't want to be cured of our autism.

Dr. Mottron was very clear about his views on curing autism in his expert testimony before the CHRT:

[86] Ms. Dawson testified that autism is a neurological disability and that people generally do not have a good understanding of this reality. Ms. Dawson stated repeatedly that autism was not a mental illness. For her, a mental illness has an onset, various treatments, and there is a return to the previous state to a greater or lesser degree. Both Ms. Dawson and Dr. M., as will be seen, pointed out that the notion of curing autism was nonsensical. Still many people want to cure autism.

Despite his expert opinion that curing autism is a nonsensical notion Dr. Mottron still held out his hand for research dollars from Autism Speaks, an organization that seeks to cure autism. Apparently money, like politics, makes strange bedfellows. But why did Autism Speaks fund research by Dr. Mottron the outcome which will likely be more of the same stuff he has been doing for years; documenting the superior intellectual gifts of high functioning persons with autism spectrum disorders?

In the past Dr. Mottron's study subjects have been persons with HFA, Aspergers and some savants. I have not seen any of his works which focused on those "other autistics" the low functioning autistic persons, including many with Intellectual Disabilities. His studies are unlikely to be of assistance to the most seriously challenged autistic persons. Obviously, given his views about the "nonsense" of curing autism the good Doctor's research will be of no assistance in achieving a cure for autism either.

Money well spent by Autism Speaks?

Personally I don't think so. Of course Dr. Mottron probably has a different "notion".




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10 comments:

Stephanie Lynn Keil said...

Dr. Mottron Research:

www.lnc-autisme.umontreal.ca

- Enhanced visual processing contributes to matrix reasoning in autism
- Enhanced perception in savant syndrome:patterns, structure and creativity
- Mutations in the calcium-related gene IL1RAPL1 are associated with autism
-Are autistic traits autistic?
-Novel de novo SHANK3 mutation in autistic patients.
- Epilepsy in autism is associated with intellectual disability and gender: evidence from a meta-analysis

About half are for those on the higher functioning end. I mean, he has to have SOME useful studies in order to get any kind of funding (like mutations).

I can't wait to see the result of "Are Autistic Traits Autistic."

That one sounds useful...

farmwifetwo said...

Reading Jonathon's blog post it may be money well spent. I'd be interested in what exactly Autism Speaks agreed to fund and how much control they maintain over the research arising from those dollars spent.

I did start to sputter and laugh where in the comments Jonathon posted that when he queried Ms Dawson about the funds she replied (paraphrasing since I don't have the actual post in front of me) "Politics and funding are not the same"....

Yeah... right.

Anonymous said...

Autism Speaks is an organization that has essentially done nothing for the kids. Autism Speaks is comprised of self absorbed, media loving individuals who sit in fancy offices in NYC and enlist brainwashed parents (who don't even seem to be able to handle their own kids well) to run around and raise even more money for their useless endeavors. There was a list posted a while back (by Ginger Taylor) detailing the money the people at Autism Speaks make and uses for bonuses, private planes and so forth. It was ridiculous as is everything Autism Speaks does. The fact that Alison Singer worked there says it all.

Anonymous said...

I read this today and it just made me sick. I don't even have the words to comment on it.



I am a professional that has reviewed many non profit organization's IRS Form 990s. Autism Speaks Form 990 raises serious red flags. Serious. This is all from the official filing for 2006.

1. Three members of the Board of Directors received $2.5 million for their own organizations.

2. The President Mark Rothmeyer, just received a 5 year contract for about $2,000,000 including bonuses with no prior background with autism.

3. The grants are primarily going to those representing institutions that are reviewing the grants. There is no indication that these conflicts are independently reviewed

4. The location of this small and new foundation is in very expensive downtown New York facilities (2 Park Avenue) rented for $200,000 by the institution that is run by the Chairman of Autism Speaks.

5. A expense of a Private Jet plane for $57,000 was noted. This is very unusual for a new non profit groups.

6. The head of the scientific review received the majority of the funds for 2005 for his institution for a data base - almost $3 million

Since the funding is now from the public - and the advertising and promotion tugs at the publics heart strings with images of families in need - the funds collected MUST be about those it raises the money for.

The following are all taken from the Form 990 filing

Web Site $830,000
Software for the computer $514,000
Lawyers $440,000
Computers $337,000
Public relations $285,000
Office annual rent $200,000
HR consultant $110,000
Editorial Consultant $76,000
Private Jet Plane for someone that entertained $57,000


Mark Rothmeyer* $360,000
Peter Bell [$240,000?]
Alison Singer $168,000
Mr Ringall $150,000
Andy Shik $110,000

Remember all the above also gets significant fringe benefits that
probably add.

Mark Rothmayer also can get $50,000 more with a bonus a year benefits

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Anonymous said...

It makes me pysically ill to think that Dr Mottron has been given half a million dollars by autism speaks.
My heart bleeds for those who fought to have funding of ABA treatment for their autistic children.
There seems to be no justice or decency left in this world.
LP

Anonymous said...

I question the intelligence of any parent who believes this organization is working for the well being of autistic kids. Sickening, simply sickening. Bob Wright has a grandson with autism and this is what he does with the money. The organization is a complete disgrace. People are beginning to wise up and many are no longer donating to the ridiculous "walks" to raise money for Autism Speaks since we are all becoming more aware of what they are doing with all of that cash!

Anonymous said...

Hi Harold,
You may find this article interesting from this month's Macleans... wish we had companies like this in Canada.

http://www2.macleans.ca/2009/06/04/channelling-autism/print/

teromakotero said...

I'm a special education teacher teaching children with autism spectrum diagnosis here in Finland. Thank you for excellent posts! It's really important to be critical with everything about autism.

In my teaching I'm trying to use methods like PRT and PECS, but I use also many things from TEACCH and Lovaas and anything that can help my students to progress.

Every day I'm learning more how to teach my students. My teachers are my students. They are teaching me how to teach. For me it's a privilege, that I can work and learn with/from children.

Roger Kulp said...

Anonymous,

I can understand why you would not want to say who you were in a public venue,but if you see this,I urge you to find a friendly news/media outlet, and have them investigate this.This is big.Autism Speaks obviously has all sorts of suspicious connections, perhaps certain well-heeled benefactors who want to use it to promote neurodiversity ?After looking at this web site
http://www.iancommunity.org/cs/home only seems to back this up.

One wonders how a group as relatively new as AS was able to fund its own department at Kennedy Krieger in 2006.

IAN, the Interactive Autism Network, was established in January 2006 at Kennedy Krieger Institute and is funded by a grant from Autism Speaks.
http://www.iancommunity.org/cs/about_ian/

Their site is full of "soft" neurodiversity messages,like

Diagnostic categories and labels do not always tell us all that much about any one individual’s functioning. It is not even so simple a thing as deciding where someone falls “on the spectrum”, for each individual is differently abled in different areas. One person may have a lower IQ, but fewer sensory issues and less obsessiveness, for example, while another may have a higher IQ, but severe sensory issues and major fixations on rituals or special topics. Which one, then, is “higher” functioning? Which one is “lower”?

What is important, above all, is to see each person with an Autism Spectrum Disorder as an individual first. Each person has their specific set of strengths and weaknesses, and beyond that mere tally of ability, their own personality, spirit, and will. Honoring that must always come first.