Fragile XXX and Autism Porn
We’d always guessed The Boy came from another planet. It isn’t that he’s different so much as unheard-of. He knows songs (mainly your less-savory country music, unfortunately) after the first few notes; he has an instinctive directional sense, an incredible memory and despite no known history of yoga, is as flexible as a giantish squid. When we were kids he’d play the Nintendo with the controller upside-down, reversing all the actions. Up is down, left is right — these are the physics of the world he knows.
Much of what draws us to Fragile X and Autism Spectrum Disorders is the extremity of their cognitive experiences — they often perform amazing mental feats but cannot hold a conversation or live independently. We who live somewhere in between feel a mixture of pity and awe; these are literally exceptional people, their worlds both above and below our own.
It’s important here before I amble further to distinguish between Fragile X and that collection of behaviors that fall under the category of autism. The National Fragile X Foundation’s Web site has a nice little cheat sheet:
- “For between 2% and 6% of all children diagnosed with autism, the cause is the Fragile X gene mutation.”
- “Approximately one-third of all children diagnosed with Fragile X syndrome also have some degree of autism” (though the actual number can range from 5% to 60%, according to a study by Matthew K. Belmonte and Thomas Bourgeron).
- “Fragile X syndrome is the most common known single gene cause of autism.”
So Fragile X tends to express many of autism’s traits, though only a small fraction of those who have autism got it from Fragile X. Which is why you’ve heard so much more about autism; its causes are unclear, though perhaps environmental, and therefore kind of boogeymanly and alarming. That autism’s frequency is on the rise is a serious cause of concern, though how much of that increase is from better diagnosis is another question. Certainly one coming up a lot this week, with the publication in the journal Pediatrics of a study saying that one in 91 American children has autism, an increase from the previous accepted statistics of one in 150. Oh the ugliness begins — nobody hates numbers more than parents.
But anyway the point is that Fragile X benefits from the massive interest and financial resources dedicated to autism, and autism benefits from Fragile X research, which focuses on genetic and neural processes and which, to quote Belmonte’s study again, “may suggest targets for autism research and illustrate strategies for relating autism to more singular genetic syndromes.”
Or as Dr. Randi Hagerman told it up straight to the United States House of Representatives Subcommittee on Health and Environment:
“… Fragile X represents a portal through which we hope to view and treat a wide variety of other disorders of brain development and function. All children with autism … should be tested for Fragile X.”
Which suggests that there is much to learn about not just FXS and autistic people from this research, but about the rest of us, living somewhere in-between those worlds of theirs. All of which brings me finally to the idea of Fragile XXX and Autism Porn, which if you read all the way through the above just to see some cellphone pics of naked savants I’m sorry to disappoint you. Fragile XXX isn’t a sex thing (though I’ll offer a tease here that future installments will certainly deal with the strange coital world of Fragile X). I’m talking porn as voyeurism, a basic way of understanding cognitively-different people that is about as revealing of their real worlds as hot girl-on-girl action is revealing of love.
Consider the nearly inevitable literary trope of the Wise Simpleton. Of Mice and Men’s Lennie, Rainman’s Raymond, The Green Mile’s John Coffey, and a zillion more — there’s a real attraction to mystical persons who are both strangely cut off and deeply connected to the world. We love it as a quick n dirty way of reconciling our feelings about operating normally in the world with the limitations of these other people; we pat ourselves on the back by focusing on the other amazing things they do. It’s an immediate gratifier, an easy spectacle requiring no commitment.
I’m not sure if it’s bad, or anyway as bad as say the Magic Negro, but it does seem to be a kind of universal trope. Certainly I’m no better, waxing all philosophical about playing Nintendo backwards. But as we continue understanding these people, as well as the causes and effects of their conditions, it’s probably important to keep asking ourselves if we’re learning more from how they are different than us, or how they are similar to us.
Oct 8th, 2009 4:44am
