Aspies For Freedom - Offer From Autism Speaks *please read and give it some thought*

I promised someone on wrongplanet that I would post this here. He had a thread going and this was the OP:

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

Then, Alex posted the video where the question is posed to him (I also promised I would post this here)

[youtube]http://www.youtube.com/watch?v=hmDzoVYAfEg[/youtube][/quote]

I would seriously value your input and your opinions. Do you think you would like to contribute?

Here is the link to the thread on WP

http://www.wrongplanet.net/postt62050.html

I don't think I saw that in the proposal.

I tried to post the youtube video of it in the OP.

They were talking about that on the WP board and what Nicholas said was that he was talking about it with his lawyer and that he decided he would copywrite the submissions and have some sort of agreement where he would be able to sue Autism Speaks if they edited or changed the submissions in anyway. They would only be allowed to post them on their site.

BobB Wrote:

morning_after Wrote:

I would seriously value your input and your opinions. Do you think you would like to contribute?

morning_after,
  That really depends on how *sincere* Autism Speaks is...

  This is particularly telling: "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."

  In one ear and out the other...   Sad

  Autism Speaks will pay lip service when they *have* to, but that's *not* good enough! They need to include *our* input, *our* viewpoint, and realize that as autistics, it's *all* about US!   Smile

  -BobB

And it would be our stories, so maybe it's a start towards that.

Gareth Wrote:

If you only give them permission to republish but not edit your work then you can sue them anyway. Copyright exists from the moment you put a work in fixed form.

As to the rest - I will not believe autism speaks are in any way sincere until they do the following:

1 - Offer a full public apology for their past actions
2 - Cease use of all degrading language (such as the AIDS comparision)
3 - Cease any and all support for chelation and ABA

I keep seeing the word chelation come up. What does that mean to all of you?

Gareth Wrote:

For the record, I do not believe that autism speaks will ever change at their core, and missed off point 4:
4 - Cease all research aimed at the elimination of autism

Now that is something I know I would like to see.

nathanww Wrote:

In any case, what do we lose?

I think some people are indicating we might lose self respect.

Beksy Wrote:

I'm not 100% sure, but I've thought about it and all signs point to "no". Right now, they're just saying "give us your stories and we'll publish them". You/We can do that on (y)our own, so what does anyone gain by giving the stories to Autism Speaks?

The organization gets a "more tolerant" media profile, and we get nothing. I can't forsee any more money going toward "coping" or "mainstream adaptation" programs to help those of us with the most severe symptoms "function" or "pass". I can't imagine any money going toward adult support groups for auties, not parents. NT parents of auties; your kids love you and we like you, but aspie/autie grown-ups have different needs than those of both NT parents of auties and autie children.

Basically, if I'd essentially doing Autism Speaks a favor, I want assurances that my (and your) service will be paid back with more than lip service.

I more or less think so, too.

But the flip side of this is that if we don't do it, Autism Speaks could make themselves out to look like the victims, and say "we made the offer. They're so disabled and disorganized they couldn't do it"

bravesj858 Wrote:

i'm going to have to say no. i'm afraid that autism speaks will either edit our positive stories to have a negative spin or claim that 'miracles like us' only happen with many years of early intervention, quack treatments and aba, something many of us didn't have much of. in each case, it's more pity and negative autism portrayal as a doomsday situation for families and maybe a way for them to dictate a measuring bar for parents for their autistic kids to live up to 'or else you're a failure of a parent and might as well kill the kid'. they will also get to get out of the negative press they have been in lately, pretty much by exploiting us. make sure you get the copyright before you do anything to them so you own the work, instead of them being able to twist it to whatever they want.

if autism speaks had an image more like 'our kid has health issues, etc, but we are glad that we had this kid' and if autism were seen more positively than they do now, i wouldn't have too much problem with their cure stuff. but since they claim every single one of us are tragic defective burdens, i can't associate myself with them.

I don't like them, either.

Just so you know, the work would only be submitted after it was copywrited.

Ivar T Wrote:

People I don't deal with are terrorists and charities funding development of prenatal tests for autism.

Well, thank you for your input.

Gareth Wrote:

I'm not so concerned about them blatantly editing without permission as they know that the backlash would be huge. What concerns me is giving them the PR ammo to be able to say "hey, we aren't so bad" without changing anything other then a pile of HTML documents.

Well, maybe someone could send them a contract or something saying they cannot use our submissions without retracting that.

Ethel Wrote:

Quote:

they're just saying "give us your stories and we'll publish them". You/We can do that on (y)our own, so what does anyone gain by giving the stories to Autism Speaks?

I agree just whacking some crap on their website, without changing the 'terrible hideous life sentence' type attitude will do little. Where I think it might help is that parents with a newly diagnosed little one are probably more likely to end up at Autism Speaks than here - because AS is a large, well known, well publicised group. So if they can go there and read us saying how cool we are, that might counteract some of the "worse than cancer" crap they put around. If the parents and public who shell out for their donations start to read that stuff, they might start to question where their money goes and THAT will force change.

Then again, will it be hidden in a tiny grey link on a grey background at the bottom of the archives somewhere were nobody will ever see it?

Maybe, but maybe not. Depends on what their motives are.

Someone on WP pointed out that when AS was started, good information on autism would have been a little hard to find. The people leading it may be acting out of ignorance.

woman from mars Wrote:

Ethel Wrote:

Quote:

they're just saying "give us your stories and we'll publish them". You/We can do that on (y)our own, so what does anyone gain by giving the stories to Autism Speaks?

I agree just whacking some crap on their website, without changing the 'terrible hideous life sentence' type attitude will do little. Where I think it might help is that parents with a newly diagnosed little one are probably more likely to end up at Autism Speaks than here - because AS is a large, well known, well publicised group. So if they can go there and read us saying how cool we are, that might counteract some of the "worse than cancer" crap they put around. If the parents and public who shell out for their donations start to read that stuff, they might start to question where their money goes and THAT will force change.

Then again, will it be hidden in a tiny grey link on a grey background at the bottom of the archives somewhere were nobody will ever see it?

I agree, particularly with the last sentence.
I vote NO!

Well, thank you for your input.

flardox Wrote:

Gareth Wrote:

If you only give them permission to republish but not edit your work then you can sue them anyway. Copyright exists from the moment you put a work in fixed form.

As to the rest - I will not believe autism speaks are in any way sincere until they do the following:

1 - Offer a full public apology for their past actions
2 - Cease use of all degrading language (such as the AIDS comparision)
3 - Cease any and all support for chelation and ABA

can I ask for some text proof of there support of chelation

I believe it but I can't get my parents to without any rock hard evidence and have been unable to find any

any way I think we should not accept their offer as many others have said they will probably twist our words and etc.

I'm not sure how much AutSp supports biomed stuff. TACA and Generation Rescue (as well as some others) are the groups that are really pushing biomed. I've heard that many biomed parents don't like AutSp because AutSp is paying for prenatal test research when according to them, the cause and "cure" are already known.

morning_after Wrote:

andrew_w Wrote:

flardox Wrote:

Gareth Wrote:

If you only give them permission to republish but not edit your work then you can sue them anyway. Copyright exists from the moment you put a work in fixed form.

As to the rest - I will not believe autism speaks are in any way sincere until they do the following:

1 - Offer a full public apology for their past actions
2 - Cease use of all degrading language (such as the AIDS comparision)
3 - Cease any and all support for chelation and ABA

can I ask for some text proof of there support of chelation

I believe it but I can't get my parents to without any rock hard evidence and have been unable to find any

any way I think we should not accept their offer as many others have said they will probably twist our words and etc.

I'm not sure how much AutSp supports biomed stuff. TACA and Generation Rescue (as well as some others) are the groups that are really pushing biomed. I've heard that many biomed parents don't like AutSp because AutSp is paying for prenatal test research when according to them, the cause and "cure" are already known.

Whoops. This is the message I meant to reply to. Sorry.

That last part is bs.

I know. That's why I said "according to them". I should have specifically said that I don't agree with them. I think that the "heavy metal poisoning" theory is nonsense, and strongly believe in the "differences in brain structure" theory, which appears to be backed up by various evidence.