LET NIMH HEAR YOUR VOICE
I have blogged about the NIMH research programme into autism before . Like most autism research it has a strong medical bias, looking for causes and cures. But if you devote most of your research budget to trying to eliminate autism what does that do for current generations of autistic people? Even assuming that the scientists do find a medical way of making autistic people normal that still leaves enormous questions.
Would it make them into better people?
Would it make them into happier people?
Would it be right to do it and should they have the right to refuse?
Who would choose for autistic children?
Because autism is so complex I suspect that it will be a long time before we have to answer those questions. What if we spent the money increasing our understanding of autism and finding ways for autistic people to get on in the world? The National Autistic Society helped to set up Research Autism in the UK precisely because there is so little decent research evaluating the interventions that are supposed to help autistic people.
And if we just see autism as a medical problem we are missing the point entirely. Some autistic people have mental health problems. Some of them have epilepsy. Some of them have severe learning difficulties. (UK English = retardation in US English) Some of them have disturbed behaviour. So do lots of non-autistic people. It is useful to inquire into whether or not any of these problems are more common in the autistic population than in the non-autistic population. It is also important to ask why. How much depression in autistic people is caused by our lack of understanding and the media message that they are damaged, doomed individuals? But we also need to investigate the strengths and appreciate the value of autistic people, whatever their difficulties.
If you think the medical model is doing a disservice to autistic people I urge you to visit this petition, asking the NIH to rethink their views on autism research. Autism Diva has an excellent post on this subject and further advice on how concerned US citizens can make their voice heard.
Coming soon in San Diego (Saturday 13 January) is a debate between David Kirby, author of Evidence of Harm and the subject of my previous blog and Arthur Allen who has written a new history of vaccines. It looks like the meeting is going to be packed with anti-vaxers who do not think that autism is so complex – its mercury poisoning doncha know? – and do not share my concerns about imposing a cure. So checkout this flier and if you can get along there and give Arthur some backing I am sure he will appreciate it. You can buy his book afterwards and he will sign it for you.
The author’s last name is Allen.
He, like Kirby, is a newspaper reporter. I hope they actually do engage in real debate.
From what I have seen on various blogs, my heart goes out to the poor soul that has been charged with moderating this. I think I would rather referee a european soccer game.
Thanks for the correction. I must have been having an Enron moment when I typed that. I share your hopes for the debate. Regarding your soccer ananlogy I think this is very much an away game for Arthur Allen. If he does manage to score will away goals count double?
Soccer? Sounds good but can someone point out the goal posts to me?
I thought they were right over there and….no, there they……OK, I see……what the??…have they been moved again?
Who needs goal posts if we’use this ball 🙂
Aye, the MacGregor’s are in on it now?
I suspect Buckminster Fuller is involved too.
Aye, it was a CLANdestine operation and it took a lot of balls.
Did you see that Merry Barua signed the petition?
I saw that. It is important for more people from around the world to sign it. US researchers often speak at interntional conferences and the US reseach agenda is held up as a model for others to emulate. The petition should make professionals question their own implicit assumptions about autism whether they sign it or not. I am glad to see that lots of them are signing.