When I was much younger, I assumed that everybody perceived the world the same way I did, that everybody thought in pictures.posted by muddgirl at 4:37 PM on April 21, 2011 [5 favorites]
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. ...Amanda isn't exactly like Carly: she once had speech, but for whatever reason, she stopped talking. And her writing and video productions skills are much better than most neurotypical people. But she still has many difficulties with many daily tasks, and her overt behaviours lead experts diagnosing her remotely to vastly underestimate what she's capable of doing. I wouldn't rush to underestimate Carly the same way.
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.
if it's true, severely autistic folk are neurotypicals locked in a prison of their own body and unable, in all cases but this one, to tell anyone about it. That doesn't seem heartwarming to me; that seems like hell.Well there are lots of 'neurotypical' people trapped in non-functioning bodies. Stephen Hawking, for example. And certainly, it's sad. But it's not like it doesn't happen.
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posted by anazgnos at 1:36 PM on April 21, 2011 [1 favorite]