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.
If the spectrum people, (both kids and adults) that have "made it" past the school-age years - to a happier self-fulfilling part of their loives boycott... then who can blame those who are trying to gain an understadning of the big-picture - the full spectrum of autism from thinking that there are only negatives. This group on this forum is extarordinarily impressive and would show moms and dads and educators and whoever the truth about autism. WHy not speak your truths? It sure couldn't hurt.
morning_after Wrote:
I keep seeing the word chelation come up. What does that mean to all of you?
***************
My father and mother (who are into homeopathy) do/did chelation for a couple of years. My dads father had heart disease - I think that is why my Dad does chelation..
What is ABA?
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"
Yeah, so? We get organized. We form a coalition, or a confederacy, or something. Maybe just a webring (gosh, web rings are so old school, but I digress). I know most of us don't agree about most things, but there seems to be three points on which we all agree:
- Many autistics can speak for themselves, and should be able to speak without publishing through Autism Speaks
- There is no One Universal Theory of What Must Be Done About Autism
- Autism Speaks' focus on "cure" does to auties more harm than good
We harness the opposing voice as much as we can, and we create a megaphone for it. We write letters to main stream media, alternative media, friends, parents, teachers, anyone who will read, and we make them think. We don't let people buy into Autism Speaks' lie that the only autistics who deserve attention, the only ones who count, are silent.
To quote Jack Kelly, a character from "Newsies":
There's a lot of people out there, and they ain't just gonna go away. They got voices now and they're goin' to be listened to... That's the power of the press, Joe. So thanks for teaching me about it.
Alone, one or two voices can be silenced. Hundreds or thousands of voices saying the same thing, or at least agreeing, are much harder to ignore.
I used "positive reinforcement" with all three of my kids. I gave them charts of the things I wanted them to eventually do for themselves - they got the benefit of not having me hover over them while they brushed their teeth and other day/night routines. WHat is wrong with positive reinforcement? ---still not sure what ABA stands for.. is that like behavior modification?
All kids start out with little kid like behaviors and they modify themselves and evolve after many many years into adults... There isn't anything wrong with change as long as it is natural and not forced. I think kids mostly go thru various behavior modifications - like table manners - not throwing food and stuff. What is the difference between behavior modification and ABA?
keep your friends close, but your enemies closer... shamshir with you Sun Tzu quote, you should consider it...
Um, as a non-ASD person I have to disagree with that analysis. She sounded like she felt unfairly attacked there and she's using openness as a defense. There's certainly no secret in-joke that autistics won't get in there; are you sure you saw her roll her eyes?
She certainly does move her head around a lot; but I don't think she's lying.
I am confused, how and when and through whom did Autism speaks ask for written submissions? from AFF? Are there written directions as to how to go about it, rules, guidelines, a procedure? If autism speask knows anything about people - not just autistics - is that we 9I am a suppsoed NT) need step by step directions given, some details, or they won't get participants. IF they want participation from someone they have to tell people how.
I meant to type : I am a supposed NT - and I need details in order to feel in the least bit welcome to participate. Your site here, game me guidelines and some rules and I feel okay with sharing here. Do they?
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
Nicolas just posted this update
"Hey all.
Yesterday I received a call from Autism Speaks' Director of Special Programs. Apparently there were some snafus with their blackberry devices and international travel, so they just got my messages. Or maybe some our grousing got back to them, who knows.
But they are going to make good on their offer to create web space to host the videos (meeting next week about how/where on their site) and at least sound genuinely enthused to expand upon the messages they are putting out. I am cautiously optimistic right now.
When I talk with them next week, I will bring up all the concerns you guys have expressed to me before moving forward. And I will make sure to keep everyone on this board in the loop.
Nicholas"
He also told me to tell you that there is no more need to pester opn the message boards. I don[t know what he means by that, though.
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.
So what's your suggestion with regards to getting our story out there?