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