Friday, September 25, 2009

A disingenuous response from Laurent Mottron

I see from reading Alan Griswold's blog, Autistic aphorisms, that the good Dr. Mottron has given a response as to why he would accept funding from autism speaks when he is totally opposed to their goal of curation of autism. I would like to write my open letter to Dr. Mottron, now that Alan has written his.

Dear Dr. Mottron:

You state that there are three alternatives for what you can do with a system you do not like: 1. You can fight it. 2. You can try to come up with something better. 3. You can try to take over the system you do not believe in as per the old saw 'if you can't beat 'em, join 'em.' Unfortunately, you have succeeded to a degree in number three. Why, I still don't understand.

Basically You admit that the only way that you can do the research you want that allows you to publish and get your name in the media (which your research group unfailing always tries to do to spin their research and what they claim the implications are in order to obtain more funding) is by working within the system that you yourself do not like.

You know that number one is futile. There is no way you can fight a system you do not like. Most people whose lives are directly affected by autism, whether they be parents or other relatives of autistic persons or those who happen to be on the spectrum themselves and don't like having these problems (myself and others included) are sane enough to realize, this is a bad thing. This disorder is not harmless as you claim. I don't know what your interest is in autism. As far as I know you have no personal dog in the fight, i.e. no child with autism and no autism disorder (Yes disorder not difference!) You can't possibly understand the pain I feel at lack of a social life, of nearly flunking out of college and not being able to become a brain researcher who will actually try to do something to end this misery (unlike yourself). You do not know what it is like to be fired from jobs constantly (something I told you about when we met in Los Angeles last year) to have an addiction to twiddling (self-stimulatory behavior) that is as insidious as any drug addiction in terms of dependence if not cost or harm to my body, to have fears and phobias and to not be able to write legibly. You do not know what it is like to be in a special ed school, to be told you are not good enough to go to a school with non handicapped children, to have to spend recess time being tutored in handwriting because your ability is so impaired and there was no other time they could tutor me, Not to be able to draw or put puzzles together. Not to be able to concentrate on things I read and to become the unwanted center of attention because of a loud voice and funny movements. You do not know what it is like to have a parent worry about what will happen to their child when they die, to have to struggle with the decision whether to institutionalize them, to have to worry about them injuring themselves, not knowing if they are sick because they cannot talk, etc. In spite of your erudition and high education obtaining both an M.D. and Ph.D. degrees these issues are an abstraction to you, Dr. Mottron if you happen to read this. So, no, most people with an interest in autism don't have your irrational ideas that this condition is harmless. They want a cure. You are outnumbered by a factor of hundreds if not thousands. So you know, that if you tried to fight it you are like Don Quixote trying to attack windmills.

Number two, it is impossible for you to come up with something better in spite of your deluded fantasies because you can't. Your research with just a limited and nonrepresentive samples of autistic children, showing how well they do on a certain test or how well they process information based on blood oxygen level dependence in an fMRI scan will not enable them to have better lives, to learn better, to get along with peers better, have a higher probability of holding down a job and not being fired or especially to obtain a high paying and prestigious job such as you have monsieur. I am glad you mentioned Isabelle Souleries' study because I have read it and even if you can fool the incompetents at autism speaks into giving you funding, based on your and Dr. Souleries' absolutely unfounded and unscientific interpretations of the study, you are not fooling me. Souleries interpretations of the study were based on the premise that children with autism who score 85 or higher on Wechsler IQ tests have superior raven's matrices performances. As you know, this finding has never been replicated by an independent researcher. Claiming that Hayashi's study showing Asperger's persons have superior scores on Raven's when matched for Wechsler scores with neurotypicals is irrelevant, because this is not what Dawson (2007) was about it was about autistics (not asperger's) who scored much worse than NT controls on the Wechsler scoring high on RPM. Also, Sven Boelte has failed to replicate you and Dawson's findings in this study at least in persons with IQ of 85 or higher. Kimberly Boddner in Nancy Minshew's group has also failed to replicate your findings in the higher Wechsler IQ autistics. Though her findings have so far only been presented as an IMFAR poster and have not yet been published in a peer reviewed journal, I think there is a good chance they will be sometime around 2010. So, your claims about Souleries' study which was partially funded by AS being able to be applied to improve the lives of autistics, has no evidence, no proof whatsoever.

Also I question the interpretations of Dr. Souleries' that the more rapid response of this group on the RPM's and the increased BOLD levels in the occipital lobes would ever translate into autistics being able to learn faster or more appropriate educational methods being developed for them. This is total speculation on your part as well as Souleries' and you know it. It is possible that the increased BOLD levels were due to a compensatory effect of other areas of the brain being impaired. You are certainly aware of research showing lack of BOLD levels in the pars opercularis and certain parts of the parietal lobes comprising the mirror neuron system. Perhaps the faster responses in the occipital lobes that Dr. Souleries found were only a compensatory mechanism and not something that would enable autistics to learn certain things faster or better if they were presented with the correct educational methodology as you and Dr. Souleries have reported to certain media outlets.

I realize you are not worried about my criticism making an impact on AS. I question your assertion that they are a neutral organization in their fund raising decisions. I seem to remember someone writing in the comments section of Harold Doherty's blog that there was bias in the funding decisions, that the people who serve on the decision boards of AS are the one's who fund themselves. Sort of like the fox guarding the henhouse. I remember Michelle Dawson saying she had collaborated with some of these people. I honestly don't know any more about it than this so I won't comment further. I wish I could find out more about how AS makes funding decisions. I am truly baffled as to why they would give you half a million dollars.

Assuming Mr. Griswold is telling the truth and you really wrote the words that appear on his blog, I appreciate your tacit admission that you are indeed a hypocrite. That you only accept the money because you have no other alternative and can't raise the capital yourself or find likeminded neurodiversity organizations to fund your research.

Now that I have heard your explanation, I hope to someday hear an explanation from AS as to why they would give someone so much money who states that this condition that has caused me so much pain and misery and pain and misery to others is harmless, to a medical doctor who would posthumously diagnose a historical figure like Tesla whom you never met who died well before you were born. I won't hold my breath though to AS ever giving me an explanation. I believe they don't owe me so much an explanation though as they do the many persons who went on their walks and donated money to them, thinking it would actually go to someone who would try to find a way to cure this condition (a formidable goal, yes, but not nonsensical). Not to mention some of them who have extremely low functioning autistic children who can't even speak and engage in self-injurious behavior who would never be deemed suitable research subjects by your group. These people, have probably never read Souleries' study and probably never will and will probably never even hear of you. They just donated money and time to AS as a matter of blind faith.

I realize my post won't change your mind, but some of us who are on the spectrum do suffer and would like to be cured and being able to go to medical school, get a ph.d. and get married and not have this disability a lot of our problems are an abstraction to you. Something to think about.

1 comment:

Jake Crosby said...

search "laurent mottron" + "autism," and you'll find this guy's got 35 papers in his name!