The word "autism" died last week, it ceased to retain any power to create a shared understanding, which is, after all, the very purpose of language.
I'm not bemoaning that Jerry Seinfeld felt himself to have some social anxieties or even that he referred to himself as on the autism spectrum, it's just that I'm plain done with the autism community's failure to have developed a robust enough vocabulary to carve out meaningful distinctions among the wildly diverse assortment of profound pathologies and mere personality accents we have come to think of as "autism."
Let us take a moment to discuss "skin disruption." What if, instead of labeling scratches, punctures, gashes, lacerations, light sunburns, third-degree burns, pimples, skin tumors, carbuncles, papercuts, freckles, flaying, open wounds crawling with maggots, amputations, and abrasions, we just lumped them under the title of "skin disruption" without further elaboration?
In other words, you visit your dermatologist with some icky, gooey red blob on your face, and he says, "It's a SKIN DISRUPTION, here's your bill for $200." You might consider his diagnosis a bit vague, a tautology, and pretty darn useless. But this generally is not what happens in a doctor's office. Over the centuries, medicine has developed a rich and meaningful vocabulary to describe the vast variety of health conditions.
But when it comes to "autism," we have failed to provide those vocabulary tools to convey the breadth of underlying meaning. So, absurdly, competent fully and functional people can be popularly understood as having "autism," even though they in no way resemble people like my own children, who are nonverbal, can't dress themselves, cannot play or have a conversation, will never work, will never have friends, and will require lifetime of 24/7 care. In the world of "autism," there are no meaningful distinctions between papercuts and amputations. (If you think I'm kidding, just read John Elder Robison, a self-identified "autistic" who writes that “'my autism is worse than yours' is a counterproductive and destructive way of thinking.")
It's time for reasonably intelligent people to cry, "Enough!" Words can do harm, but perhaps just as importantly, lack of words can do harm. Now with a half million with more severe forms of autism and probably at least as much with higher functioning forms, we need to radically expand our vocabulary to make the practical distinctions necessary for the shared understanding of the needs of this population and the profound challenges they very often face.
Having the public somehow conflate Jerry Seinfeld's anxiety with my children's incapacitating disabilities leads only to confusion and complacency, and we already have plenty of that in the "autism" world.
—Jill Escher is president, Autism Society San Francisco Bay Area, @jillescher
I'm not bemoaning that Jerry Seinfeld felt himself to have some social anxieties or even that he referred to himself as on the autism spectrum, it's just that I'm plain done with the autism community's failure to have developed a robust enough vocabulary to carve out meaningful distinctions among the wildly diverse assortment of profound pathologies and mere personality accents we have come to think of as "autism."
Let us take a moment to discuss "skin disruption." What if, instead of labeling scratches, punctures, gashes, lacerations, light sunburns, third-degree burns, pimples, skin tumors, carbuncles, papercuts, freckles, flaying, open wounds crawling with maggots, amputations, and abrasions, we just lumped them under the title of "skin disruption" without further elaboration?
In other words, you visit your dermatologist with some icky, gooey red blob on your face, and he says, "It's a SKIN DISRUPTION, here's your bill for $200." You might consider his diagnosis a bit vague, a tautology, and pretty darn useless. But this generally is not what happens in a doctor's office. Over the centuries, medicine has developed a rich and meaningful vocabulary to describe the vast variety of health conditions.
But when it comes to "autism," we have failed to provide those vocabulary tools to convey the breadth of underlying meaning. So, absurdly, competent fully and functional people can be popularly understood as having "autism," even though they in no way resemble people like my own children, who are nonverbal, can't dress themselves, cannot play or have a conversation, will never work, will never have friends, and will require lifetime of 24/7 care. In the world of "autism," there are no meaningful distinctions between papercuts and amputations. (If you think I'm kidding, just read John Elder Robison, a self-identified "autistic" who writes that “'my autism is worse than yours' is a counterproductive and destructive way of thinking.")
It's time for reasonably intelligent people to cry, "Enough!" Words can do harm, but perhaps just as importantly, lack of words can do harm. Now with a half million with more severe forms of autism and probably at least as much with higher functioning forms, we need to radically expand our vocabulary to make the practical distinctions necessary for the shared understanding of the needs of this population and the profound challenges they very often face.
Having the public somehow conflate Jerry Seinfeld's anxiety with my children's incapacitating disabilities leads only to confusion and complacency, and we already have plenty of that in the "autism" world.
—Jill Escher is president, Autism Society San Francisco Bay Area, @jillescher
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