http://www.wired.com/medtech/health/magazine/16-03/ff_autism
A Researcher's Puzzles Point to the Differences in the Autistic Brain
The YouTube clip opens with a woman facing away from the camera, rocking back and forth, flapping her hands awkwardly, and emitting an eerie hum. She then performs strange repetitive behaviors: slapping a piece of paper against a window, running a hand lengthwise over a computer keyboard, twisting the knob of a drawer. She bats a necklace with her hand and nuzzles her face against the pages of a book. And you find yourself thinking: Who's shooting this footage of the handicapped lady, and why do I always get sucked into watching the latest viral video?
But then the words "A Translation" appear on a black screen, and for the next five minutes, 27-year-old Amanda Baggs — who is autistic and doesn't speak — describes in vivid and articulate terms what's going on inside her head as she carries out these seemingly bizarre actions. In a synthesized voice generated by a software application, she explains that touching, tasting, and smelling allow her to have a "constant conversation" with her surroundings. These forms of nonverbal stimuli constitute her "native language," Baggs explains, and are no better or worse than spoken language. Yet her failure to speak is seen as a deficit, she says, while other people's failure to learn her language is seen as natural and acceptable.
And you find yourself thinking: She might have a point.
In My Language
Baggs lives in a public housing project for the elderly and handicapped near downtown Burlington, Vermont. She has short black hair, a pointy nose, and round glasses. She usually wears a T-shirt and baggy pants, and she spends a scary amount of time — day and night — on the Internet: blogging, hanging out in Second Life, and corresponding with her autie and aspie friends. (For the uninitiated, that's autistic and Asperger's.)
On a blustery afternoon, Baggs reclines on a red futon in the apartment of her neighbor (and best friend). She has a gray travel pillow wrapped around her neck, a keyboard resting on her lap, and a DynaVox VMax computer propped against her legs.
Like many people with autism, Baggs doesn't like to look you in the eye and needs help with tasks like preparing a meal and taking a shower. In conversation she'll occasionally grunt or sigh, but she stopped speaking altogether in her early twenties. Instead, she types 120 words a minute, which the DynaVox then translates into a synthesized female voice that sounds like a deadpan British schoolteacher.
The YouTube post, she says, was a political statement, designed to call attention to people's tendency to underestimate autistics. It wasn't her first video post, but this one took off. "When the number of viewers began to climb, I got scared out of my mind," Baggs says. As the hit count neared 100,000, her blog was flooded. At 200,000, scientists were inviting her to visit their labs. By 300,000, the TV people came calling, hearts warmed by the story of a young woman's fiery spirit and the rare glimpse into what has long been regarded as the solitary imprisonment of the autistic mind. "I've said a million times that I'm not trapped in my own world,'" Baggs says. "Yet what do most of these news stories lead with? Saying exactly that."
Photo: Jessica Dimmock
I tell her that I asked one of the world's leading authorities on autism to check out the video. The expert's opinion: 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.
