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| Should we work with Autism Speaks to promote positive images of autism? |
| Yes! This isn't about spite. Any chance to get a positive message across is good. (Besides, if they back out now it will prove to everyone how they really feel.) |
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40% |
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| Not sure... (If this is your answer, please explain why in a Reply Post.) |
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| No way! We don't want to make them look like they care while they are still working for a "cure". It's more important that people know we disapprove of their policies. |
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| Total Votes : 89 |
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krex
Phoenix
Joined: Jun 21, 2006
Age: 46
Posts: 5090
Location: Village of the Damned
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 Posted: Tue Apr 08, 2008 2:01 am Post subject: |
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Thanks for posting the video Alex..it help reconfirm what I "thought" but was not certain of....The founders of Autism Speak are only interested in projecting an image of "caring" and their real agenda is to make money and have personal influence. How could I know this with certainty? Because they are masters of double-speak and only people who are trying to deceive incorporate such techniques.
"Making deals with the Devil"
Through out American history, out government has made "deals" (most of them covert) with fascist dictators, if we thought it might benefit us in some way..ie...."lesser of evils" ideology. They have all ended badly and soiled the reputation of America (at least for the minority of persons who bothered to educate themselves about the dealings.) Two examples that comes to mind are Saddam Hussein, (who was willing to fight out enemy Iran) and Al Qaeda fighting our enemy (the "Evil Russians")....need I say more?
There have been many other historical examples of minority groups that have joined with more influential or socially acceptable group in the hopes of raising their own publicity or empowerment, to find the opposite effect. I consider this the "Divide and Concure" approach and I think it is the mostly likely thing to happen. If they can divide the AS community into low and high functioning or only present the highest functioning to validate their personal agenda of "society doesn't need to assist people on the high end of the spectrum, cause look how smart and successful they are"....who benefits? Not us.
In my mind the whole concept of high and low functioning is much to complex to make a good poster or 30 sec advertising spot, which appears to be there marketing technique. They are not about in-depth analytical thought, they are about emotion laden double speak to manipulate concerned and empathetic individuals into opening their check books. You really think a few examples of married or employed aspies is going to change their mind set? Did you listen to her words? She can't even wrap her mind around the concept that autism is anything but a disease,dysfunction or disability...this is not a "bright person" and I for one have no trust or respect for her or her group.
I also don't think her offer is based on anything but wanting to create an illusion of being a caring open-minded person. It was spoken in response to someone pointing out how negative their presentation of autism is.....It was not something she thought of her self out of a change of mind or gaining some empathy of autistics experience. It is called "saving face".
I can not say this strongly enough.This is NOT a trust-worthy person who has our best interests in mind. It is a money raising brain-washing organization based on manipulating reality to meet their agenda. To believe otherwise is wishful thinking. Rather then waste one minute on this organization, we are better served to join ones that already respect us as humans or create our own. As more and more adults and children are DXed with aspergers, our strength can grow from within(look at the numbers for WP since it began)...patience not compromise, is called for.
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Kaleido
Nearly NT and counting
Joined: Feb 19, 2007
Posts: 2602
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| Posted: Tue Apr 08, 2008 4:04 am Post subject: |
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| krex wrote: |
I can not say this strongly enough.This is NOT a trust-worthy person who has our best interests in mind. It is a money raising brain-washing organization based on manipulating reality to meet their agenda. To believe otherwise is wishful thinking. Rather then waste one minute on this organization, we are better served to join ones that already respect us as humans or create our own. As more and more adults and children are DXed with aspergers, our strength can grow from within(look at the numbers for WP since it began)...patience not compromise, is called for. |
I see. Then I have changed my mind.
Of course, we are brought up to have respect for our parents and people with influence, so its only natural we would initially presume them to be responsible and acting in our interests, but I can see now that being independent from them is probably more wise. |
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ouinon
chemical reaction
Joined: Jul 11, 2007
Posts: 5349
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| Posted: Tue Apr 08, 2008 12:37 pm Post subject: |
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My own suspicion is that unless someone has an official certificate of diagnosis as autistic from their childhood Autism Speaks will say that anyone doing well as an adult was never really autistic.
Perhaps it might be a good idea to submit just a couple of such lifestories, with doctors certificates, so "unimpeachable" by A Speaks, on which no doubt can be cast , or spin put, and see what Autism Speaks "does" with them, before offering more.
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krex
Phoenix
Joined: Jun 21, 2006
Age: 46
Posts: 5090
Location: Village of the Damned
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Smelena
Cure Neurotypicals Now!
Joined: Apr 02, 2007
Posts: 2150
Location: Australia
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| Posted: Tue Apr 08, 2008 5:17 pm Post subject: |
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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
_________________
To see my family and my advocacy efforts: http://au.youtube.com/watch?v=JR03uSFQf6Y and http://au.youtube.com/watch?v=7-ZBxFYFvuA |
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Smelena
Cure Neurotypicals Now!
Joined: Apr 02, 2007
Posts: 2150
Location: Australia
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| Posted: Tue Apr 08, 2008 5:26 pm Post subject: |
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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.
_________________
To see my family and my advocacy efforts: http://au.youtube.com/watch?v=JR03uSFQf6Y and http://au.youtube.com/watch?v=7-ZBxFYFvuA
Last edited by Smelena on Tue Apr 08, 2008 7:44 pm; edited 1 time in total |
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morning_after
Phoenix
Joined: Jan 29, 2008
Age: 28
Posts: 1041
Location: Arizona
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| Posted: Tue Apr 08, 2008 6:15 pm Post subject: |
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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.
_________________
Bill Cosby: Dad is great! Give us the chocolate cake!
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NicholasGray
Tufted Titmouse
Joined: Jan 24, 2008
Posts: 46
Location: Phliadelphia
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| Posted: Tue Apr 08, 2008 7:26 pm Post subject: Checking in again. |
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| Quote: | | I would also love to watch videos of the whole day. Is there any chance of putting them all up? |
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? |
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Smelena
Cure Neurotypicals Now!
Joined: Apr 02, 2007
Posts: 2150
Location: Australia
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| Posted: Tue Apr 08, 2008 7:43 pm Post subject: |
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| Quote: | 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. |
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
_________________
To see my family and my advocacy efforts: http://au.youtube.com/watch?v=JR03uSFQf6Y and http://au.youtube.com/watch?v=7-ZBxFYFvuA |
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lau
Really nice person to know. :)
Joined: Jun 18, 2006
Age: 60
Posts: 9482
Location: Somerset UK
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| Posted: Tue Apr 08, 2008 7:55 pm Post subject: |
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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.
_________________
"Striking up conversations with strangers is an autistic person's version of extreme sports." Kamran Nazeer |
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SDFarsight
Snowy Owl
Joined: Feb 13, 2008
Age: 21
Posts: 160
Location: Coventry
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| Posted: Tue Apr 08, 2008 8:00 pm Post subject: |
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| Kaleido wrote: | 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. |
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. |
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morning_after
Phoenix
Joined: Jan 29, 2008
Age: 28
Posts: 1041
Location: Arizona
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| Posted: Tue Apr 08, 2008 11:54 pm Post subject: |
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What about those of us that can't make a video right now, like me?
_________________
Bill Cosby: Dad is great! Give us the chocolate cake!
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krex
Phoenix
Joined: Jun 21, 2006
Age: 46
Posts: 5090
Location: Village of the Damned
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| Posted: Wed Apr 09, 2008 4:00 am Post subject: |
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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/
_________________
Just because one plane is flying out of formation, doesnt mean the formation is on course....R.D.Lang
Visit my crafts store
http://www.etsy.com/shop.php?user_id=5412685 |
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Smelena
Cure Neurotypicals Now!
Joined: Apr 02, 2007
Posts: 2150
Location: Australia
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| Posted: Wed Apr 09, 2008 4:35 am Post subject: |
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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
_________________
To see my family and my advocacy efforts: http://au.youtube.com/watch?v=JR03uSFQf6Y and http://au.youtube.com/watch?v=7-ZBxFYFvuA |
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Fuzzy
Ack! Thbbbt!
Joined: Mar 31, 2006
Posts: 3695
Location: Alberta Canada
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| Posted: Wed Apr 09, 2008 7:34 am Post subject: |
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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. |
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