New Scientist Article: Voices of autism 'silenced' by charit

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Voices of autism 'silenced' by charity
• 02 February 2008

AN EXTRAORDINARY dispute has broken out between people with autism and a charity that aims to help them. At stake is how such people are perceived by the general public.
Like many people with autism, an autistic blogger who goes by the screen name "Abscout" is angry about the way the condition is portrayed by some charities. To try and paint a different picture, Abscout set up a spoof website called NTSpeaks.org, a parody of the site of the New York-based charity Autism Speaks. The NT stands for neurotypical, a term sometimes used by people with autism to describe the rest of the population.
Last week, however, in response to demands from Autism Speaks, Abscout took the site down. Autism Speaks claims the site infringed its copyright, and that it could have confused people looking for information about autism. That in turn has outraged Abscout's supporters, who say that Autism Speaks is suppressing the views of the very people it is supposed to represent and help.
"If we do speak, we're only allowed a voice if it agrees exactly with the people who say they're speaking for us," says Amanda Baggs, another blogger with autism based in Burlington, Vermont. "That keeps people believing the same thing Autism Speaks wants people to believe, including every negative stereotype of autism out there."
Autism Speaks says its aim is "to change the future for all who struggle with autism spectrum disorders". One of its stated goals is to "cure" autism - an aim some people with autism find offensive. "The autism spectrum is something that is intrinsic to our personalities," says Ari Ne'eman, president of the Autism Self Advocacy Network in Baltimore, Maryland. "We can no more separate the autistic part of ourselves than we could our gender or race."
Particularly galling for people with autism, he says, is a video on the charity's site called Autism Everyday, in which mothers of children with autism talk about the emotional and financial impact the condition has had on their lives. "Autism Speaks puts out a very fear-based message," says Ne'eman.
NTSpeaks.org carried a much more assertive message. Under the slogan "Learn the signs of NTism", it listed "dislike for people who are different", "refusal to accept that there is a problem" and "conforming attitude". Another one of its headlines read, "NTs destroying AS/Auties pride and joy".
Autism Speaks says that people could have confused NTSpeaks.org with its own site, as it carried a similar logo. "If an improper use of our name or logo creates confusion among those we serve about the source of information, it is a disservice to all," a charity spokesman says.
Baggs insists there is a need for people with autism to publicise their own messages. She says the charities "change a lot about how autistic people are treated and understood by other people and by professionals".
Gareth Nelson, who founded the autism rights group Aspies For Freedom is doing his bit. In protest at Autism Speaks's actions, he has secured the NTSpeaks.net and NTSpeaks.com domains and posted new parodies of Autism Speaks there. "It is important to do this in order to stop Autism Speaks from simply silencing their critics and to show them that we are not going to sit back while they intimidate people," he says.
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Weblinks
• Autism Speaks
• http://www.autismspeaks.org/
• Autism Every Day video, Autism Speaks
• http://www.autismspeaks.org/sponsoredevents/autism_every_day.php
• NTSPeaks.net
• http://www.ntspeaks.net/
• NTSpeaks.com
• http://www.ntspeaks.com/
• Amanda Baggs's blog
• http://ballastexistenz.autistics.org/
• Autism Self Advocacy Network
• http://www.autisticadvocacy.org/
From issue 2641 of New Scientist magazine, 02 February 2008, page 9

oh my!

whats up with the teeth on the kid on the Autism Speaks website? Did they intentionally use a kid with messed up teeth for a more "ret*d" look?

That isn't messed up teeth, that's a child transitioning from baby teeth to adult teeth. All kids go through that stage. For a grade school child, he's rather attractive.

oop, my bad....

I just noticed something else... the Autism Speaks logo has 'TM' written next to it, which is the proper symbol to use to claim trademark before it is registered... A registered trademark will feature an 'R' in a circle...

Without a registered trademark, they have no standing to sue anyone for infringement. Any cease and desist letter could be considered fraudulent... their demand for a cash payment, coupled with the fraudulent C&D letter, amounts to a very good case for fraud and coercion...

The bastards have money and they're rather use it to squash critics then listen and pay attention to what they should be.

Amanda is something else again, articulate to the point she can intimidate me. But I finally screwed up my courage enough to thank her for my AHA!! moment. (not that you can ever really thank someone for just being who they are, but I tried) A truly amazing woman. Her personal site is on my favorites list and what she has written in the past and now is very worthy of a look see.

Good article, does it have a very wide reading? I hope so.

YES!!

This kid still has her site up, and with the support from other autism advocates, and she is a hoot.

Amanda is quite amazing, and her blog is on my favorites, too. She always has something interesting to say.

And this is in "New Scientist." Awesome.

Autism Speaks was started by the wife of an executive at General Electric whose grandson has autism. I read this in PARADE magazine. It sounds like the organization was founded out of concern, rather than fear. I am not exactly up to speed on why Autism Speaks is an considered by some in the autistic community to be an organization that negatively affects people with autism.

So, why is it, just curious?

P.S. I loved to read New Scientist online until the site ceased to be free. But the first several paragraphs that are still available for free reveal that the magazine has not stopped providing interesting headlines. Maybe I'll get a subscription one of these days.

To answer your question, Hyperbolic:

Because their press releases paint an unrelentingly bleak picture of the lives of autistics - we have no empathy, can never learn coping skills, will forever be overgrown children, etc.

Because they will not permit autistics to speak for ourselves. If we can speak, we are dismissed as "not really autistic".

Because their board consists only of parents of autistic children - adult autistics are unwelcome there. In fact, they do not seem to acknowledge that adult autistics even exist.

Because one of their officials, in testimony before the Canadian Parliament, reportedly said it would be better for children to be dead than autistic.

You can see how I might take some of this personally...

any autism organization that is any good has to have adult autistics involved as well as kids. It is really dumb to just have parents and not include the rest of the spectrum community.

anyway as i have said before spectrum peoples should be given a fair go, and they are not better off dead. what a horrible thing of that person to say. can't help but think that group is dedicated to wiping us out rather then helping us.

The usurping power grid can't have dissenting anti-socialites (eg individuals) now can they?