Offer from Autism Speaks, please give your opinion

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Hi everyone.

I'm Nicholas. Some of you may have read and/or listened to the interview Alex did with Alvin Keith and myself about our movie If You Could Say It In Words.

I went with Alex's group to the UN discussion on autiusm awareness this week. I got the chance to ask the panel a question and decided to address the way autistics are potrayed in major advocacy campaigns (especially by Autism Speaks). I suggested that too much time is being devoted to showing the worst moments in autie's lives while none was being spent on celebrating your achievements. I believe this contibutes to a message of pity and fear; it furthers the misconception of auties as damaged/diseased.

Suzanne Wright, the co-counder of Autism Speaks, responded with a public offer to promote positive stories on Autism Speaks' website if I provide them to her. This was, of course, right after she claimed her orgainzation is making a ton of progress to make autistics feel more accepted. She then promptly compared autistics to AIDS patients.

...sigh...

Still, they have all the money. They have all the corporate partnerships. They have the most influential lobbyists. They have the best machinery in place to influence public opinion and the use of government dollars. If there is a chance to get them to take up the right side of this issue for a change, even if its due to nothing more than public pressure, I feel like we should seize it. Helping to steer their organizatoin, with all its capabilities, in the right direction has to be better than going to war with them, right?

But I would like to get feedback from the folks here at wrongplanet on how you feel about it.

Thanks
Nicholas

Tell her that I had been diagnosed with AS by Dr Tony Attwood himself, and that my mother never regretted having me OR my non-autistic brother. Tell her that training for both parents and children is better than any supposed cure.

And remind her of Huxley's speech to 'Soapy Sam' when Sam Wilberforce asked him whether he had an ape on his grandmother or grandfather's side:

Yes. I think that Autism Speaks is probably just as unaware of the high-functioning side of autism as the general public is and we should work together. I disagree with a lot of what Autism Speaks says, but I think it is good if Aspies and parents of severely autistic children stop yelling as much at each other and maybe work to promote a positive image of autism and at the same time work together to help LFA kids learn how to speak. I don't agree with a lot of the negative image Autism Speaks gives autism, but regardless of everyone's feel for a cure, I think groups like Autism Speaks and groups like Wrong Planet can at least unite around a common desire that we want to teach autistic kids who cannot speak how to speak. For LFA kids, we Aspies probably have something to contribute that no one else has - we maybe at least understand a tiny bit of what the kid is going through. This does not mean we approve of their perspective in every way though.

I think we should, and I have been hoping to have an opportunity to tell my story, as a 19 year employee of the company that Mr. Wright is second in command of. Yes, the company started by an Aspergian, TA Edison.

I was Dxed last year at age 48, and foolishly thought that telling my bosses might make it easier for us to work together. I am a Union Steward, and so frequently am engaged in contentious discussions with management. They refuse to acknowledge the issue unless I use the ADA to play the Poor Handicapped Me BS. I am no more handicapped (to me) than a lefty, but I would fit the portion of the ADA requiring inability to participate in major life activities.

But I was normal enough to teach Machinist Apprentices as an instructor, to give an impassioned presentation to Bob Nardelli while he was the VP in charge of our 6000 employee plant, to be trusted by my union sisters and brothers to be their elected representation, to be elected to be on the Board of Directors of ABATE of PA, a motorcycle legislative action group, be a T Ball coach, Cub Scout leader...and damn proud single father.

I look for the opportunity to expand our civil rights as different, not as handicapped.

Mark F Haller
Union Steward, UE 506

Oh, and I now am working to get the Erie PA chapter of GRASP active again.

PS Bob Wright will be in Erie for the annual shareholders meeting April 23rd, maybe he could come see me while he's in town.

The only thing I can give is it's never a good idea to angrily attack an oppositional group if you want to bring any influence from yourself onto them. It usually turns into a pinball game. One's always going to try to prove the other wrong without looking at the big picture. At least it's always been my experience with myself and through observation.

So I think educating the public would be a better option. After all, sadly they're people too who don't know better. The process might be slow but I think it would be way more affective then just getting angry at them about it. After all, the more they're educated the more they'll eventually know through that hard brick wall.

And yes I was brought up by hippies but it has nothing to do with what I just said. Peace Out!

Absolutely not. They are in bed with Cure Autism Now, and as long as that association is there Autism Speaks is not worth talking to. Along with the fact that they have NO boards members who are on the Spectrum.

Change both those factors, and maybe I'll change my mind.

Hopefully Alex will never take money from them. once people give you money, they start telling you what to do.

Yeah,

Bogging down the system or 'idea' with an internal war is to much like government and religious institutions. Who loses?

Us.

Yes, anything positive is good.

Even if they are with the cure people, they might change their mind if we go with them, but they probably won't if we do nothing.

If they wish to cure us, than I don't want to bother with them. If they decide that people on the spectrum don't need to be cured, after talking to us, than I have no problem with it. I'd like to see if we can turn the opinions of the people at Autism Speaks around, so they won't feel the need to associate with CAN, anymore.

Well, I suppose we could if we do it right.

Simply showing someone why they are wrong without actually saying "your wrong" can be far more effective then telling people they are wrong and backing up your argument.

So I think we should send them as many success stories of people with autism as we can. Preferably, it can be inferred that if the person did not have autism they could not have succeeded in the way they did.

Flood them with positive stories please .... from everyone .... Aspies/Auties, friends, co-workers, parents etc

Also, is there any data out there beyond the 1 in 150? For example what is the breakdown of the 1 in 150 in terms of Autism vs Asperger's vs PDD-NOS

If only a small portion are LFA then shouldn't their advertising mirror the reality?

Helen

P.S. I think it's ironic that people with Autism are supposed to be the rigid thinkers! Seems to me that some from Autism Speaks are extraordinarily rigid in their view points!