Newspaper interview with Ari Ne'eman

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It is in today's edition of The Guardian:

http://www.guardian.co.uk/society/2011/ ... licy-table .

Ne'eman is the founder of the Autistic Self Advocacy Network (ASAN).

I think it's great that he can speak out for autistic people. Okay so while I agree he can't say EXACTLY what LF autistic people want or need, he probably has a better insight into their lives than parents and professionals (not saying that parents are bad or anything though). We are better able to see the possible causes of 'tantrum' behaviour for example. To a neurotypical parent of an autistic child (and indeed other people witnessing) a child dropping to the floor and having a 'tantrum' in a supermarket would be quite baffling. Why is the kid doing this? What's causing them to react so strongly? We as autistic people ourselves, although unable to answer for the kid, could suggest that it's a sensory thing, that the lights are too bright or are flickering, that the colours of the packaging is too intense, that the constant BEEP BEEP BEEP of the tills is driving them slowly insane. So yeah what Ne'eman (sorry if I spelt it wrong...) is doing is good. It's a shame not everyone sees it that way.

I 1000% disagree that any 23-year old can know more than a parent what their LF autistic person needs overall.

Sorry but NOT a chance in the world.

That said, I don't believe Ari thinks he can or does. He believes that we should have input into the training material that the parent and educators use as is said in another post.

That is the first time I've seen a percentage in the allocation of research.

Sorry, but if those numbers are accurate, I'd say I have to side with Ari. There are large numbers of children growing up right now that are going to be adults before much of that causation and detection research pans out - there needs to be more effort put into effective services and education to integrate this part of the population into the mainstream. And that goes for services, therapy and educational practices for HFA through LFA - not one segment of the spectrum over another. And people on the spectrum need to be involved in the development of these for the obvious reasons. Someone who has been there can tell you what does and does not work and why.

Just because Ari is high functioning does not mean he automatically discounts the needs or challenges in LFA. I have seen no evidence that he does this yet it seems to be widely assumed by his detractors. I do not understand that. At all.

Those numbers are MISLEADING rather than inaccurate. They are (I believe) the percentages of studies funded by Autsim Speaks in 2009 NOT the inclusive or exhaustive list at all. There are plenty of studies in Pub Med being done for adults and also for making Autistic life easier. This is the "overall" problem I had with Ari in my talk with him recently. He knows the laws, acts, etc by rote memory but is not up to date on a lot of his science facts and what actually does exist today in Pubmed and by whom. Either that or he is purposefully using these outdated numbers to make a political statement....

I think THIS letter best describes the points of his opponents in a very rational way...

http://www.ageofautism.com/2010/03/many ... ility.html

Now all this said, I am standing alongside of him (Not Literally) in my own community pushing for Autistic representation in medical best practices. I am presenting to Doctors at OHSU next month in fact to this end. So I "get" what he is saying.... just dont agree with EVERYTHING he says..