I was cleaning out my inbox and came upon this article. I don't remember reading it on this list. I thought it would especially interest Larry Arnold.
Best regards,
Shelley
NYTimes
http://www.nytimes.com/2004/12/20/health/20autism.html?oref=login
How About Not 'Curing' Us, Some Autistics Are Pleading
By AMY HARMON
Published: December 20, 2004
BOICEVILLE, N.Y. - Jack Thomas, a 10th grader at a school for autistic teenagers and an expert on the nation's roadways, tore himself away from his satellite map one recent recess period to critique a television program about the search for a cure for autism.
"We don't have a disease," said Jack, echoing the opinion of the other 15 boys at the experimental Aspie school here in the Catskills. "So we can't be 'cured.' This is just the way we are."
From behind his GameBoy, Justin Mulvaney, another 10th grader, objected to the program's description of people "suffering" from Asperger's syndrome, the form of autism he has.
"People don't suffer from Asperger's," Justin said. "They suffer because they're depressed from being left out and beat up all the time."
That, at least, was what happened to these students at mainstream schools before they found refuge here.
But unlike many programs for autistics, this school's program does not try to expunge the odd social behaviors that often make life so difficult for them. Its unconventional aim is to teach students that it is O.K. to "act autistic" and also how to get by in a world where it is not.
Trained in self-advocacy, students proudly recite the positive traits autism can confer, like the ability to develop uncanny expertise in an area of interest. This year's class includes specialists on supervolcanoes and medieval weaponry.
"Look at Jack," Justin pointed out. "He doesn't even need a map. He's like a living map."
The new program, whose name stands for Autistic Strength, Purpose and Independence in Education - and whose acronym is a short form of Asperger's - is rooted in a view of autism as an alternative form of brain wiring, with its own benefits and drawbacks, rather than a devastating disorder in need of curing.
It is a view supported by an increasingly vocal group of adult autistics, including some who cannot use speech to communicate and have been institutionalized because of their condition. But it is causing consternation among many parents whose greatest hope is to avoid that very future for their children. Many believe that intensive behavioral therapy offers the only rescue from the task of caring for unpredictable, sometimes aggressive children, whose condition can take a toll on the entire family.
The autistic activists say they want help, too, but would be far better off learning to use their autistic strengths to cope with their autistic impairments rather than pretending that either can be removed. Some autistic tics, like repetitive rocking and violent outbursts, they say, could be modulated more easily if an effort were made to understand their underlying message, rather than trying to train them away. Other traits, like difficulty with eye contact, with grasping humor or with breaking from routines, might not require such huge corrective efforts on their part if people were simply more tolerant.
Spurred by an elevated national focus on finding a cure for autism at a time when more Americans are receiving autism diagnoses than ever before - about one in 200 - a growing number of autistics are staging what they say amounts to an ad hoc human rights movement. They sell Autistic Liberation Front buttons and circulate petitions on Web sites like neurodiversity.com to "defend the dignity of autistic citizens." The Autistic Advocacy e-mail list, one of dozens that connect like-minded autistics, has attracted nearly 400 members since it started last year.
"We need acceptance about who we are and the way we are," said Joe Mele, 36, who staged a protest at Jones Beach, on Long Island, while 10,000 people marched to raise money for autism research recently. "That means you have to get out of the cure mind-set."
A neurological condition that can render standard forms of communication like tone of voice, facial expression and even spoken language unnatural and difficult to master, autism has traditionally been seen as a shell from which a normal child might one day emerge. But some advocates contend that autism is an integral part of their identities, much more like a skin than a shell, and not one they care to shed.
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