Autismland Ethics (#273)

"Differently able" is a phrase I prefer to use in talking about Charlie in part to call into question the notion of mild in regard to autism, and to highlight the gold and dross of the wages of autism. It is in listening to the sound of Charlie’s talents that I have learned some new skills myself.
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"Differently abled," Anne Fadiman notes in The Spirit Catches You and You Fall Down, is "a substitute for ‘disabled’ that had enjoyed a brief vogue among progressive journalists" (p. 242). Fadiman notes her distaste for the term, "which struck me as euphemistic and patronizing"—and promptly devises a similar phrase, "differently ethical", that she considers "supremely accurate" to describe the Hmong in America. In investigating the accusation that the Hmong are "terrible drivers" (p. 241), Fadiman learns from the manager of the California Department of Motor Vehicles that a number of Hmong cheat on the written test by using crib sheets in the form of designs sewn into their clothing. She weighs this unethical act against the Hmongs’ "group ethic" that makes them more than determined to get the needed license (perhaps an elderly relative is sick and needs to visit a txiv neeba shaman), even if they have to break "rules and regulations." The greatest taboo is to act unethically towards one’s relatives, towards one’s own.

While I have been teaching her book in my Cultural Anthropology class, Fadiman is not an anthropologist, but a journalist. She is remarkably fair in presenting both sides of the "collision of two cultures"–American doctors and Hmong–and yet it is clear that her heart is with the Hmong (as mine are, too). Like Fadiman, while I find the anthropological viewpoint more than helpful in describing my status in Autismland, I am no professional but—I like to think–something closer to a journalist, who butts her way in while asking a lot of questions and seeking the best–the truest–angle for her story.

So is it that we autism parents have to act–simply become–differently ethical–to do what’s right for our children?

The Greek root of "ethical" is ethos, a word with the straightforward meaning of "custom" or "habit." And the task I do set for myself everyday is to figure out Charlie’s latest ethos, to understand him as far as I might on his own terms while noting how different he and I are from each other. He can hardly wait to roll himself up in his blue blanket and to run up and down the room, I focus my eyes on the tiny black marks on a piece of paper.

Fadiman, as a journalist, positions herself between the American doctors and the Hmong in her book. This stance enables her to consider and to report on both viewpoints in language that is as objective and as open-minded as possible. The word "journalist" is from the French jour, "day," and I’ve been writion the daily Charlie beat since the second month of my pregnancy when I started to record the pangs in my stomach (and in my head) in the What To Expect When You’re Expecting journal provided courtesy of my mom.

I do not agree with Fadiman’s assessment of the term "differently abled" as "euphemistic and patronizing." And I would not at all be surprised if some of what I write here about autism comes across as similarly "euphemistic and patronizing"–even fictional. I do not have autism. My son Charlie does and, because of this, the entire course and ethos of my life has been altered and, I know, for the better.

I was reminded of this when Charlie had a nice chat with his dad on the phone tonight.
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Jim had to work late tonight and Charlie had already started yawning at 6.45pm after a full day at school (with a curious period of getting upset as he drank his juice at lunch) and two speech therapy sessions, at home and at a center. We then when to three stores for various provisions and for a refill of Charlie’s medication. Charlie got a pack of sushi and–after he had inhaled that–wanted to "eat string beans!"

"Hi Daddy," he smiled cheek to cheek into the phone when Jim called from his office in the Bronx. "Bye Daddy. How are you I’m fine. Hi! Hi! Hi!"

It is Jim’s birthday tomorrow and there was Charlie singing "Happy birff-day too wyouoooo, hahppee birff-day too wyouooooo! Hahppee birff-day too Char-wee, hahppee birff-day to wyouoooo."

I could hear Jim saying "happy birthday to Charlie and Daddy!"

"Hahpee birffday Char-wee ann Da-deeeee!" said Charlie. With continual smiles.

Object lesson: It is Jim’s birthday tomorrow, but here is Charlie singing still of Charlie’s own birthday, and Dad’s only after prompting.

Object lesson: It is Jim’s birthday tomorrow so I chose a card at Walgreen’s before we picked up Charlie’s medicine. "What number is it?" I asked. "Twenny-dive!" said Charlie, only to quickly correct himself: "Fiff-tee!"

In Autismland, you take care of your own first and foremost. "He doesn’t qualify for that based on these criteria" is a phrase you hear too often (I heard it today), and you know the right response, according to Autismland ethics. "We have to have high standards for Charlie. I really think we need to reconsider this….. I’ve been observing X and talking to Y…… and I don’t understand how you can say that you ‘don’t expect him to appear near age level’………"

"It is better to betray one’s country than one’s friend," as Fadiman quotes E.M. Forster’s dictum (p. 242). The bottomline of our ethos for Charlie, in Autismland, is that Charlie and his needs come first, and the asking (even in the face of however many negatives and "we don’t think he needs X") comes easy after that.

The bottomline is, Charlie always comes first. And that’s the ethics of Autismland.

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