Offer from Autism Speaks, please give your opinion

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The following is a lik to the basic mind-set and agenda of autism speaks....


http://www.autismspeaks.org/press/allen ... ration.php





On another note.I found the following link while lloking at their web-site. It appears that there is some resentment from some members of members of WP and Aspies For Freedom posting on their web-site....

we are described as "irrational and immature" by some posters, others seem to agree that we may offer a worth while perspective (most of those are aspies themselves). Please check this out.....




http://www.autismspeaks.org/community/f ... php?t=5683

krex,

I've just finished eating my breakfast and having read this 2 links I feel incredibly nauseous. I'm struggling to keep my food down.

I am a Neurotypical parent of 3 sons (2 diagnosed with Asperger's) and the thread on autism speaks made me furious!

After having read your posts on this thread krex, and watched the videos I have changed my earlier position.

I don't think NicholasGray should become their 'roving reporter'. And morning_after made a good about about exploitation. Yes, I think they would exploit adults living on the spectrum.

Nicholas, I watched the video at the UN of Suzanne Wright's 'offer'. I agree with krex said, the offer was made to create an illusion being a caring open-minded person .... it was a response ....

The hidden meaning behind the Autism Speaks members that I got was ..... "Look at us. Aren't we important. Aren't we clever. Pat ourselves on the back"

Also, I thought back over one of the most disturbing videos that Autism Speaks made. The one with the song 'What Kind of World Do You Want'. The conclusion of the video ..... they want a world where Autism is history.

Nicholas I fear you will be exploited. You are articulate, intelligent and good-looking. In other words, you are highly marketable. You are an incredible resource. I don't want you to be used by Autism Speaks so they can say, 'See, we listen'.

Helen

I think Nicholas, Alex and Katie need to get together and come up with a plan to put to WrongPlanet members.

How about calling for submissions of stories/videos from all different people .... adults on the spectrum, parents of LFA's, parents of HFA's, parents of Aspies ... so that we have a range of representatives.

Then once they've gathered these stories they work out how to market them.

For example, I've read posts from OregonBecky. She is a parent of a 24 year old LFA and OregonBecky has stated she resents the misrepresentations of Autism Speaks.

I remember last year Alex posted about becoming a more influencial lobbying group but it kind of fell flat. However since then, the number of members has significantly increased.

I'm in Australia so don't fully understand what's happening in the USA.

Is the message of of adults living on the spectrum starting to be heard? Is this putting a dent (even if it's just a small dent) in Autism Speaks' marketing machine?

Also, on the videos they talk about the ASA. What does this stand for?

I would also love to watch videos of the whole day. Is there any chance of putting them all up?

Thanks
Helen

Edit: I hope I haven't offended OregonBecky. I make no claims to speak for her. I just wanted to point out that there are parents of LFA's that resent Autism Speaks, and these parents need their voice to be heard too.

Last edited by Smelena on 08 Apr 2008, 6:44 pm, edited 1 time in total.

I think they're much more dangerous than they give themselves credit for. They link AS and shootings, then say we will cause AS adults to be forgotten.

But I think if they try to cure people on the spectrum against their will, THEY will cause AS people to turn violent.

Violence with AS is basically a way of trying to communicate.

You can go to www.un.org/webcast/2008.html
They store the webcasts in chronological order, so you'll have to scroll down a bit. FYI, you need RealPlayer to watch the conference, which is nearly three hours long. You might spot Alex, Katie and myself getting up a few times and leaving the room out of frustration over the discussion content!

Before this discussion devolves too far into an Autism-Speaks-Sucks-a-Thon, let me try to narrow our focus. Yes, we all know, Autism Speaks has been doing some terrible things and has been presenting a rancidly inaccurate image of autistic life. I don't think anyone here is arguing otherwise. I also think MOST people here want to see that change. (There are probably a few people who just want to see that whole organization dismantled.) The real question, I guess, is what is the best way to effect that change?

I can see the logic of saying, "Boycott them entirely and be as public about it as possible." It's the clearest way to make it known that the autistic community does not want this organization's help unless/until they apologize and change course completely. For that to work though, they need to feel the sting of our absence, and I'm just not sure that is possible. They are well funded, well connected, and have so much greater access to the media than anyone else, that they can simply shout their message louder and longer to the masses. Not to mention, even if we do make a big enough stink for them to notice, they already operate from the point of view of a victim. I suspect it would simply galvanize their resolve to feel persecuted. Being despised by autistics just gives them one more reason to want to wipe them off the planet.

But if the community is resolute in believing that a boycott is the best way, I want to support that.

I keep thinking though that the Wrights seem to intend much more good than they are doing. My impression -- and I know I haven't spent a long with them or anything -- is that they are a well meaning couple of people. Their daughter had an autistic baby, didn't know how to handle it, had trouble finding resources for help, so they took the initiative to start an charity. Because they had money and connections, they have been able to get a lot more attention drawn to autism than any ten groups combined before them. They might not know much about autism, but they want to help.

And if that is where the story ended we'd probably all be singing their praises. The problem is that BECAUSE they don't understand the condition very well (if you listen to Bob Wright's comments on that panel, it's pretty obvious they don't!), they are succeptible to the same propaganda as the rest of the country. Fear sells. It plays big. And I suspect that when they first got involved, they had a stronger emotional reaction to the horror stories and let that emotion drive the efforts of their group. Remember that Autism Speaks is a very young organization. It has not beenaround very long and is still trying to get a handle on its own identity and purpose.

I'll bet it came as a shock to the Wrights when they first started hearing backlash from the Autism Everyday video. I'll bet they had no idea why auties were upset by it, especially when they were hearing so many positive things from terrified parents who have been struggling without resources or understanding of what to do. It seems like only now are they starting to get the idea that they offended people, and how. And it seems, at the very least, that they are open to allowing other voices and other viewpoints to be expressed. I know they did an essay exchange not long ago with GRASP over the word "cure" and how it is perceived. They have made this overture as well. If they are turned down flat, why would they ever make such an offer again?

Maybe it is about saving face for them. I don't know. But their audience is awfully wide and awfully influential when it comes to funding programs that can help autistics and their families. And if we have a chance to reach that audience -- to let them see more of the spectrum than they're being shown now -- then it is hard to say no to that.

As far as exploitation, I have been giving some thought to that. Some of the posts here have made me start planning very seriously about how to avoid that problem. My lawyer has therefore given some thought to it as well.

I think that no matter what happens, I will do these video interviews. I will shoot them and edit them with feedback from the community. After they have been copyrighted, I will offer Autism Speaks the right to show them and promote them on their site PROVIDED that they are not edited or altered in any way. If they were to try to edit content, it would not only be grounds for legal action, but would very publicly make clear their intentions to misconstrue what autism is.

I will also make them available to other sites and organizations, and just plain free on youtube and such. This way no one can say it is sponsored by Autism Speaks, or belongs to them or anything else. It is just an independent video they either promote as promised, or they refuse to promote.

Feedback?

I think the videos need to be made and your plans for copyrighting etc are very wise.

I also think the videos need to show as many different stories as possible. LFA's, HFA's, Aspies, Parents of these groups etc. I think this is what you're planning anyway.

Helen

In line with smelena's suggestion, I thought I'd merely link to something I posted, earlier, in the "The Dino-Aspie Ex-Café".

I have a naive belief that the majority of the members of Autism Speaks are perfectly reasonable, caring people. I have no intention of changing that opinion.

I refuse to talk in the terms that some use... that "Autism Speaks is an evil organisation" and such like. Organisations do not possess sentience.

I detest some of the things they have done and are doing, but I think that is all attributable to a lack of awareness. If we talk to them, and educate them, they can change. If we fight, everyone loses.

By all means, Nicholas, go ahead as you say - with care.

I agree.

The real enemy is ignorance, not Autism Speaks per se. So hopefully we can achieve more by sharing our ideas with them and even have a real part in shaping their organisation. After all, why would they not want to hear Aspies/Auties speaking, as that is their name. And if Autism Speaks does reject our views and experience, instead sticking to their apparent ‘Autism=AIDS’ mentality, then that proves even further how intolerant they are of the very people they claim to speak for.

What about those of us that can't make a video right now, like me?

As long as your film is owned by you and they are not permited to edit it...sounds like it can't hurt. I'm sure I appear black and white thinking and a bit paranoid but after being "used" and manipulated do to my own trust and nievity...isn't that a sane reaction to someone who calls you a disease to be cured. It also makes me nervious that they have joined two other procure groups in 1996. I was not impressed by the books and web-ites they list under resources(WP isn't one)...but they did list two blogs that are supportive to autistics...



http://www.taaproject.com/

Nicholas,

Can I offer you some advice with regards to you videos? My advice comes from a 'movie-goer' perspective. I'm probably telling you what you already know, but I don't know your background.

I have watched Rainman, Snowcakes and The Black Balloon. http://www.wrongplanet.net/forum-posting.html

The Black Balloon was by far the best film and I believe this is because the writer/director is a woman with 2 Autistic brothers. The film was written with indepth understanding of the issues .... and LOVE.

I recommend the following:
- Do as much research as possible. Hang out on WrongPlanet for a while ... in all the forums. You will meet individuals with HFA, Asperger's who are parents themselves. You will meet NT parents of Autistics/Asperger's. Post away. Have fun. Many of the threads are very playful. Yes there are fights .... but show me any online community that doesn't have fights!

- Meet in person as many different people as possible. You know Alex and Katie (a brilliant start), but they only represent one group of the equation. Can you attend any parent support groups, adult support groups, partner support groups etc etc.

- Read the 'Dino-Cafe' http://www.wrongplanet.net/postt32122.html . These are the 'old farts' Many did not know they had Asperger's until they were in their 40's or older. Be warned, they're all a bit crazy and you will probably fall off your chair laughing with some of their antics.

Helen

Nicholas,


Are you capable of taking legal action against them if they should edit your videos? Remember that they can fairly use snippets for say, a commercial, and that snippet may put things in a light you dont wish. Remember that they will have some "fair" use of any material in their possession, and while you might protest, by then its too late.

Are you capable of mounting a law suit? Remember that they have oodles of cash for legal defense, and if you sue them, they are likely to just stall until you run out of money.

No. The view of autism is developing. Mostly Wrong Planet is speaking of all sides of the question.

The single point of view groups will not change, but the fox will always claim to be in charge of the whole hen house.

Autism has been in the news, AOL is about all I hear. There is always someone coming on posting about locked wards and you have never seen the problem, and it must be stopped.

Even by 1 in 150, which I doubt, thinking it much higher, there are 2,000,000 in the US, and they are not in locked wards, most are invisible.

I am older, we were pre Dx, and were not the worst people around.

Where Autism Speaks cannot stop saying cure, extirminate autism now, a lot of progress has been made in treating autism.

This is what I hear from Smelena, NewPortBeachDude, that treatment is needed, and works.

This is the other side of treating children, and I do not think the two sides can get along.

I favor treatment for the new crop. The majority are older, and accptance of our right to exist would be nice. It is a developmental delay, we do change over time, but we do not vanish, still different.

Autism Speaks has nothing for the older set, the majority. Argueing about weather we are a diseased problem that should be ended, we cannot win, for most of us come across as different, and that is seen as bad, in America at least. The normal response is we are crazy or mentally ret*d.

We are just coming to understand the range, from within. To Psychology we are people who get a test score, and they can see no deeper. Even in their mind blindness, some useful therapies are being developed.

I can see it works, is needed, and have softened my stance toward Psychobabbling pill pushers and their storefront religion. I do still see it as a religion, not a science, pills are used as badly as antibiotics have been, which I am also against.

But some treatments are coming out that work. They are for children, and for all our varity, we could have all done better. Give the kids the best chance possible, that is where all the funding should go.

Autism Speaks pockets half the income, and the other half seems to go for more fund raising, with some given as grants for genetic research. We are no where near treating genitic conditions, it can only be used to identify and exterminate.

My own view is autism has always been around, it is in the whole European genome. It, like eveything else, just comes down to the mix. Predictions of outcome have mostly been wrong. Even what everyone was sure of a few years ago is being shown to be wrong. LFA were thought to be hopeless, until they got computers. They are some of the best minds on WP.

If cure means mass extermination, I cannot support it at all. If cure means less than humane treatment, for any of us, I cannot support it.

Wrong Planet should stay as it is, a rapidly growing platform for the autistic to disagree with each other, and everything else. This is the messy path of truth.

My mind has not changed about a cure. I have learned that I learn from LFA's, and I have to accept that even the Psychobabble witchdoctor priests do get it right sometimes.

Curbies seek answers without understanding the problem, just give us money, and we will do something.

When the Witchdoctors discover something, they publish, and others try it. Just by random chance some works, and is is kept and broadly applied. Good things are coming to the children, so I can overlook the source.

Treatments that work should be broadly applied, and well funded, but Curbies are sucking up the money with scare stories. They are harming the children who could benefit now.

Curbies chant Cure, Cure, Cure, to be the only voice heard.

Witchdoctors have an American Federation of Witchdoctors, and paid spokespeople who get out the message that our Religion could become a Science in time, and while we only have a Master Degree in Psychobabble, we shoulsd be treated like Medical Professionals. My own view is bartenders are better at it.

Wrong Planet is the only voice of tthe Autistic, and friends. It is the only place to find broad disagreement, which does help people think for themselves. Autism is a word, the thing is much larger.

While my thanks go to Alex for starting this place, I have to agree that CockneyRebel has done more good for more people than anyone. Wrong Planet has given her a place to speak, and all listen.

I do not see The American Federation of Witchdoctors supporting Autism Speaks. True, a Cure would put them out of business, but I think they agree with the real medical profession, that the only option is treatment.

All of the other groups lack Autism, Wrong Planet has it in abundance. I do not need to be cured, treated, advocated for, or managed. I do like to be informed, this largest gathering of the Autistic ever still lacks hard numbers, I think it much higher than the 1 in 150 that is considered disabled.

Only Wrong Planet can reach the broader Autistic community. Everyone is here and welcome, some live in supported conditions, some with only economic support, many do badly in jobs but keep going, and some thrive, finding ways around problems.

Then there are the Half Aspies, normal and functional, but with a few loose hairs and odd questions. Autism lite is better than slightly crazy, for crazy gets worse, but Autism understood gets better.

I see it as a personality type that sometimes goes overboard, but mostly gets by, and has questions.

Only Wrong Planet fills the needs of the broader community.

I think it is great that Alex does speak for the actual people involved. His base is growing rapidly, and soon he will be the voice of 50,000. Someday a million, and he has already changed the world view of Autism.

IBM most likely did try to buy Microsoft, the old does try to take over the new.

Wrong Planet has the real voice, and I have seen Witchdoctors coming here to learn. Where else can you view the mass communication of Autistics?

The Republicans do have the Business and Banking connections, but people give money to the Democrats, because they have the people. Major grants and donations are coming to Wrong Planet.

It is best positioned to give broad service to the Autistic.

Just give it a bit of time to self organize. We have found we share a common wavelength, are a spectrum on that wave, and we will come to what is best for us, and share it.

Hillery said, Autism costs 35 Billion a year, then wanted to increase funding. Autism Speaks wants more, because they like money. The Witchdoctors want billable hours, government support for their religion.

Only Wrong Planet could reduce the economic burden. Here we get free therapy, with a choice of providers. Here we get to point out that we also produce for the economy, useful stuff, like that rocking Gates.

Autism Speaks, as much as I disagree with them on many things, has the momentum. They have the access, they are the "it" organization right now. If we can use them to get "our" messages out there, it will be a good thing. That doesn't mean other organizations can't keep trying to overtake them - they should. But as long as most of society believes Autism Speaks is representing autism, well, it would be good to make it represent as much of the spectrum, as much of the diversity of opinion, as possible.

I think the stories about how how specific activities, services and support brought about change in the lives of certain people with the condition will be the best. A child who struggled but became successful as an adult and credits his parent's patience and understanding, that would be a good one. Alex's story, about his rough high school days, and how his parent's helped him overcome that, to where he is now able to advocate. Stories of hope, that also show parents the way, how to deal with their children, and that will give Autism Speaks some clue as to where funding could really be used.

----

EDIT:

I am only just now reading the middle of the thread. Some issues have been raised that I was not aware of. Hmmm ... OK, I still think it would be good to feed them some of the stories WE want to world to see. HOWEVER,

a) Request approval over the final display and any editing, to insure it is OUR message, not theirs.
b) Do NOT mention the name of this or any other group, so as to avoid any implication that this group supports their efforts as an organization.

Wow! After just reading that Autism Speaks thread, can I change my vote to "NO"...

I am curious as to why that ihatethefda person even assumed that some WP teens were going over there pretending, but I am not too concerned about it, since I see that their account was banned. Anyway back on topic....

Ok so after thinking it over a bit, I feel that the best way to get the message out there, is to do it via WP. And to do it in a professional, scientific and yet personalized way. Just as there are tons of scientists who think that we need to cure autism, there are just as many out there who are going to say that we shouldn't. (It is just like the global warming scientific community: there are actually more scientists who say that global warming is a natural cycle, however it is the other side of the fence who gets the most media attention, which is extremely misleading to those who have not done their own research.) Same thing goes for autism -- the people on the side of the fence that want Auties/Aspies to be exposed in a positive light are the ones that need their voices to be heard. We have to overpower those on the other side of the fence who would liken autistics to AIDS patients and people with a "debilitating disease". Metaphorically speaking, we need to grab a lot of megaphones and scream "We Are Here, We Are Here!"

I want people to wake up and realize how wonderful and unique my son is. I want them to stop focusing on the fact that he cannot get along well around large groups of people, and that he will only look you in the eye to speak if you are being 100% sincere in your ever day life, with no lies, no deceit, etc. Otherwise, it pains him to look you in the eye and he will look away the entire time you speak to him. I want people to realize that my son loves unconditionally, and this is why it hurts him when he is bullied or looked upon as being 'lesser of a person'. I want everyone to wake up and realize that my son is one of the most amazing and spiritually advanced people that I have ever come across (and I've met a lot!). And I am sure that just about every other parent/aspie/autie around here feels about like I do!

On that note, hehe -- Nicholas -- I am a complete research nerd, so if you need anything whatsoever, any help with getting the word out - do not hesitate to ask me. I might be a little slow, but what I lack in speed I more than make up for in results lol.

A few things that I was wondering...

I keep trying to find statistics on the 1 in 150 statistic and can't find anything conclussive. Statstics have been used to miss-lead and manipulate and cloud understanding so many times that I think finding a break down would be helpful. Why is it so hard to find the "hard Science" numbers on this...seems important to understanding the issues.


There seems to be a flaw of logic being perpitrated by the "it's the vaccine" group who want to deny that there was autism before the use of vacination or the "invention" of the DX??? It seems like a convenient way to create an illussion of an epidemic but also (conveniently) allows society to deny the existence of a current population of adults recently DXed on the spectrum that were previously misDXed most of their lives...rather embarrassing to the psychiatric profession I would imagine.


The positive results seen with ABA treatment which AS has pushed to be covered by insurence companies.....? Who is the control group in these studies? Are they given alternative treatments or no treatment. I agree with Inventor that much of HFA is a developmental delay....I will never "inherently" understand NV communication but I do learn from trial and error over time....I had "social stories"...they were called life.


A pretty painful way to learn and I'm glad that there is an alternative offered to kids now but....do they just teach you how to be as unauthenic as many NT's? I don't think that everything NT's do is "perfect"......is that the real model we want to use in "normalizing" autistics. I mention this because so much of the DSM words everything autistics do as "dysfunctional", from lack of eye contact to less desire to socialize (for some) with little understanding of the "why"...such as the NVD, APD, and mistreatment of autistics by intolerant people.

I guess those are just a few things I would like to see more clearly explained when discussing positive profiles of the spectrum.