Autism: Diversity or Disorder?
Mon Mar 10, 2008 at 06:16:21 AM PDT
Wired magazine just ran a huge feature on autism. Except, this story comes with a twist.
Rather than speculate on where autism comes from -- as so many news stories do -- it questions whether scientists need to redefine their definition of "normal." In this article, Wired reporter David Wolman actually holds a "conversation" with an autistic woman who lives in a housing development for elderly and mentally disabled people. She is unable to cook dinner or even dress herself without help. But she is able to download software, type and correspond with people online, even making viral videos explaining what autistic people think and feel.
I tell her that I asked one of the world's leading authorities on autism to check out the video. The expert's opinion: (27-year-old autistic Amanda) Baggs must have had outside help creating it, perhaps from one of her caregivers. Her inability to talk, coupled with repetitive behaviors, lack of eye contact, and the need for assistance with everyday tasks are telltale signs of severe autism. Among all autistics, 75 percent are expected to score in the mentally retarded range on standard intelligence tests — that's an IQ of 70 or less.
People like Baggs fall at one end of an array of developmental syndromes known as autism spectrum disorders. The spectrum ranges from someone with severe disability and cognitive impairment to the socially awkward eccentric with Asperger's syndrome.
After I explain the scientist's doubts, Baggs grunts, and her mouth forms just a hint of a smirk as she lets loose a salvo on the keyboard. No one helped her shoot the video, edit it, and upload it to YouTube. She used a Sony Cybershot DSC-T1, a digital camera that can record up to 90 seconds of video (she has since upgraded). She then patched the footage together using the editing programs RAD Video Tools, VirtualDub, and DivXLand Media Subtitler. "My care provider wouldn't even know how to work the software," she says.
Baggs is part of an increasingly visible and highly networked community of autistics. Over the past decade, this group has benefited enormously from the Internet as well as innovations like type-to-speech software. Baggs may never have considered herself trapped in her own world, but thanks to technology, she can communicate with the same speed and specificity as someone using spoken language.
Autistics like Baggs are now leading a nascent civil rights movement. "I remember in '99," she says, "seeing a number of gay pride Web sites. I envied how many there were and wished there was something like that for autism. Now there is." The message: We're here. We're weird. Get used to it.
This movement is being fueled by a small but growing cadre of neuropsychological researchers who are taking a fresh look at the nature of autism itself. The condition, they say, shouldn't be thought of as a disease to be eradicated. It may be that the autistic brain is not defective but simply different — an example of the variety of human development. These researchers assert that the focus on finding a cure for autism — the disease model — has kept science from asking fundamental questions about how autistic brains function.
A cornerstone of this new approach — call it the difference model — is that past research about autistic intelligence is flawed, perhaps catastrophically so, because the instruments used to measure intelligence are bogus. "If Amanda Baggs had walked into my clinic five years ago," says Massachusetts General Hospital neuroscientist Thomas Zeffiro, one of the leading proponents of the difference model, "I would have said she was a low-functioning autistic with significant cognitive impairment. And I would have been totally wrong."
Wolman's article was peppered with quotes by scientists who questioned conventional wisdom about autism because there are some IQ tests, in which autistics like Baggs do score within normal range. Also, psychologists once considered homosexuality a disorder to be cured so it is only a matter of time when autism, too, is considered another form of diversity, they said.
Still, there are other experts who disagree.
But critics of the difference model reject the whole idea that autism is merely another example of neuro-diversity. After all, being able to plan your meals for the week or ask for directions bespeak important forms of intelligence. "If you pretend the areas that are troubled aren't there, you miss important aspects of the person," says Fred Volkmar, director of Yale's Child Study Center.
In the vast majority of journal articles, autism is referred to as a disorder, and the majority of neuro-psychiatric experts will tell you that the description fits — something is wrong with the autistic brain. UCSF's Merzenich, who agrees that conventional intelligence-testing tools are misleading, still doesn't think the difference model makes sense. Many autistics are probably smarter than we think, he says. But there's little question that more severe autism is characterized by what Merzenich terms "grossly abnormal" brain development that can lead to a "catastrophic end state." Denying this reality, he says, is misguided. Yale's Volkmar likens it to telling a physically disabled person: "You don't need a wheelchair. Walk!"
Meanwhile parents, educators, and autism advocates worry that focusing on the latent abilities and intelligence of autistic people may eventually lead to cuts in funding both for research into a cure and services provided by government. As one mother of an autistic boy told me, "There's no question that my son needs treatment and a cure."
I know we have some mothers here with autistic children and there are moms who work with autistic children as well as autistic readers yourselves. What do you think of this article? It definitely made me question the way doctors approach "treatment" of autistic children. But the last thing I would want to see is money dry up to help families with basic assistance like housing and caring -- not to mention, more research on how the autistic brain works.
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