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... 
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! 
-BobB
As for the corporate partnerships... remember what Starbucks did? I haven't bought any coffee from them since I heard about that, and won't until I've heard they've stopped supporting curebies.
I was not around then. Should I avoid Starbucks for yet another reason?
I keep seeing the word chelation come up. What does that mean to all of you?
A treatment for heavy metal posioning, abused as a "treatment" for autism by some quacks.
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.
morning_after,
Ignorance? Hardly!
AS was started in 2005; there was *excellent* information available at that point! I could give Cure Autism Now a *little* benefit of the doubt, since they were started in 1995, but they should have gotten a clue a *long* time ago!
Imagine watching the Muscular Dystrophy Telethon on Labor Day and seeing films of parents talking about how their child with MD is "such an unbearable burden, we wanted to drive off the George Washington Bridge and end it all!"
Ain't gonna happen. Period.
The curebies might have *started out* being ignorant, but at this point, they're running on pure, unmitigated, irrational, pathological HATRED of autism and anything autistic!
Can anyone name *one* other charity that has such utter and total CONTEMPT for the people they're supposed to be serving?
Autism Speaks is going to have to make a *complete* attitude adjustment before we can trust them to look after *our* best interests!
-BobB
agghhh never teach me ABA... hmmm what i will do is give them a long hard dose of Logic, that contridicts them.
I did that once. it worked. But the second time i attempted in the same building (they were trying to force me to use the bathroom), i was grabbed, and had to defend myself.
Anyway... i watched the you tube vid, and the guy doing the reading, calls it an epidemic that has a devestating impact on everyone.
Then says we gotta celabrate it.
Ironic...
I think that the sucess stories will be used as carrying on the "Cure" ethos. We should make our own site, that REALLY celabrates it. And doen not need cure, but rather sets to change the attitudes of NT parents and people.
That lady compares it to AIDS. A disease. And no, if you keep wanting to Cure it the acceptance will not filter down through society, people will think ASD is a Problem.
And also. They say that AS high functionings get recognised more for smartness and problems overlooked. That has really not hapened to me. I don't feel appreciated very much and feel that if i wasn't given the stigmatism as "a disability", then i would have some.... Just thought: i suppose life is what you make it regardless of others $h!tt!n9 all over you, and if i want praise i'd better go seek it.
I think it makes sense that people on a site dedicated to autism acceptance would not want to work with a curebie organization like Autism Speaks.
I can see reasons for and against - one one hand, it would be good to have positive information out there for parents with newly diagnosed children, but on the other hand, we don't want AutSp to claim that the positives are a rare "best-case scenario" and occur "despite" autism, or claim to be supporting autism acceptance when they are still working for a "cure" (now, if they actually did change their ways, that would be a different story, but that would be rather unlikely).
Maybe we should work on improving this site's static content (wiki, etc.) instead?
Thanks Ethel, that's very helpful.
Given that great chunks of Autism Speaks info keeps turning up in political statements, such as the Barak Obama statement which was recently highlighted here, I'd wondered if it might be good for us to work on a generic piece which can be adapted for local situations and which we can all send to our local elected representatives...
If the only information politicians and their researchers have to hand is from Autism Speaks, then that is what they will use. I think what we need to do is to give them an alternative. I thought it might be an idea to email it in the first instance, then maybe a week later to send a hard copy. Thereafter, it could be helpful to send regular, monthly or two-monthly updates on what is happening and reminder of what AFF and related groups stand for and are doing.
That way, the next time they need to speak about or express some opinion on autism, they have more than one source to go to. Currently it seems that Aut. Speaks is the only organisation providing easily accessible information, and that is something we need to counter.
Any thoughts on this as an idea? Is it do-able?
Only if they sign a legally binding contract with the following conditions:
1. Autism Speaks may not edit any material they receive from us
2. They may not claim association with (whatever the other party in this agreement is) when promoting positions which the pro-acceptance disagrees with.
3. they may not provide descriptions or other supplemental text degrading those in the stories we give them.
4. (whatever the other party in this agreement is) has the right to suspend this agreement at any time and mandate that Autism Speaks cease circulation of stories we provide them.
That sounds like a good idea to me. I voted no, but I might change my mind if they signed such a contract.
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]
I would seriously value your input and your opinions. Do you think you would like to contribute?
[/quote]
I have always felt that they should ask the adults among us (especialy those among us with recent DX) how we survived our lives
It seems they are two-faced.
And they always defy our requests!
Is that all they do?
All they do is DEFY DEFY DEFY!
Ok, nicolas posted this on WP
Hello all.
Just thought I'd share some updates on this whole topic.
First, I met this week with two advisors in non-prfit organization and fund-raising about helping me put this whole thing together. After reading everyone's concerns, I wanted to make sure to do these completely outside of AutismSpeaks's purview. We had a long dinner and talked about the specifics of getting some rcognizable names on-board and for how to get some attention to them on a national level.
Second, amusingly enough, I called the office of Special Projects at AutismSpeaks to follow up with them about issues such as "no right to re-edit" etc. The lady didn't call me back. A week later I called again. No response. I made a third call. Still nothing. I am going to try again by email this week.
I suppose she might just be very busy, but it looks more and more like the offer was completely insincere. I wonder what the best way to make THAT fact known might be...?
Nicolas also sent me this message when I sent him the questions you asked
Autism Speaks has not only not provided a means for submission on their site, they are not responding to phone calls or emails about the topic now! I'm more than a little peeved.
I still plan on doing the videos independent from their organization, but may need some time to set it up.
My direct email is nicho@chipchair.com. People can submit to me there for the time being if they are interested in being part of the project. Just note, submitting does not mean someone WILL be part of it. My goal is to get stories from all across the spectrum and across the country (possibly the globe..?). And selection will probably not begin for a couple of months.
But by all means, share them. In fact, I encourage people who want to share their stories to start a thread on Autism Speaks' message board as well mentioning the project and why it is happening without that group.
Nicholas
PS Thanks for following up with me and collecting those questions
NAAR and CAN (the 2 who merged into autism speaks) both had similar behaviour when contacted by individuals on the spectrum. Try contacting them with a different email address and pose as a parent and see what response you get. If they respond faster, that says a lot.
Well, I'll have to mention that to Nicolas
Heh, thats good that Autism Speaks has refused (by them ignoring the attempt to make contact they have REFUSED). Now we don't need to collaberate with them just so that they can't put blame on us. And now instead of helping them boosting their image we can bring it down. Need to find a way of publicising this, what was the meeting when the Autism Speaks person offered her offer? Any newpapers/magazines that were reporting about the confrence? If there were then someone could contact them.
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.
Seems abit like Autism Speaks is just charity that gives money to poor snobs unhappy with their children - not really part of the autism community.
Ivar,
No, they *take* money from poor snobs who are unhappy with their children and keep it for *themselves*! 
-BobB
I thought you'll never ask.
BS=Bullshit.