Of Course She Knows (#95)

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“Are you sure your grandmother doesn’t understand English?” Jim asked me. We were a few hours into our transcontinental flight from Oakland to Philadelphia and Charlie, having gone to bed late and gotten up early, was soundly sleeping in his window seat, feet tucked into a sleeping bag made from his blue blanket. He still has the same big forehead and curve to his nose and cheeks as he did when he was a baby and, new parents dumbfoundedly in love with our new boy, stared endlessly at his rosey, dark-eyed face. “I mean, she’s been here since the 1920’s and those speeches your dad and your cousins gave last night weren’t translated.”

“That’s what everyone’s always said,” I replied, putting down my book. “I guess she must know a little.”

“Maybe more like a lot,” Jim offered. I looked over at slumbering Charlie. “Yeah, I guess there might be something in saying, assuming, she doesn’t–I was surprised to hear she was a citizen, I thought I’d heard she couldn’t pass the test because she couldn’t learn the English answers.” “But she is a citizen, your cousin said,” Jim reminded me. “Yeah, turns out she is.”
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I had been reading about the importance–the ethical need, I should say–of “presuming competence” in Charlie and those with autism, with cognitive and/or intellectual disabilities, and especially in those who are non-verbal or who, like Charlie, can talk but struggle to use language in ways that most of us recognize as “normal” communication. Out of nowhere, Charlie has been saying to me “farm fahm-lees!” or “Jersey farm farm-lees” and smiling. We used to think of these outbursts as “inappropriate” uses of language and ignore them; we now value these spontaneous words from Charlie and strive to figure out what he means by them.

“Farm Families” was a game (now known as, I think, Old McDonald Had a Farm) Charlie used to have, in which he had to match Mommy Cows, Horses, Sheep and Pigs with Baby Calves, Foals, Lambs, and Piglets who were hidden under plastic haystacks. You had to put a plastic animal and a haystack on a little platform and press each to hear if they made equivalent species noises. Charlie so loved the game that, whenever he encountered any set of farm animals, he had to line them up in place, sing “Old McDonald,” and make the animal noises. Once, when another child was trying to play with him, Charlie got so upset at this disruption of his sense of order that he bit the other child’s forearm. (“Don’t worry, Kristina,” said his mom, “you should see what my three kids do to each other.”) Eventually, after some worsening behavior squalls, it became clear that Farm Families was becoming a script Charlie had to play when he saw a cow and a horse and it went to the garbage. This summer, a speech therapist had the game and I was not surprised to hear how much Charlie liked speech that day (and not the next, when she did not bring the game).

Sometime in August, Charlie started to talk about “farm fahm-lees cow, MOO, farm fahm-lees chick-kenn, BUCK BUCK BUCK, farm fahm-lees horse, NEIGH” and laugh at me. And then he’d say, “all done farm fahm-lees, all done!” “Well, yeah, we used to have it but—” “Not anymore!” Charlie finished triumphantly, grinned, ran off. As he had with Barney and the Teletubbies, Charlie was understanding that he no longer has certain toys because he had “trouble” with them and because he is “too old.” And he smiled at his very ability to understand the difference between the behavior-wrent, weeping Charlie who thought the world was ending when those toys were gone, and the 8-year-old tall guy who can tell me the iceberg’s tip of his thoughts and see how I’m trying to grasp his meaning.

Reading the autobiographical writings of Sue Rubin and Tito Rajarshi Mukhopadhyay–both diagnosed with “severe” autism and, while mostly unable to talk, very able to type and explain their thoughts fluently–has made me try even harder to listen to Charlie and to presume that he understands every word he hears at least as much as a “typical” child his age. Presuming anything else can lead one to assume something more than incompetence in Charlie. Presuming “mental retardation” as part of a “dual diagnosis” in Charlie can readily lead to low expectations not only about his comprehension, but also about what we can expect of him: Reading books, writing his thoughts, sitting on six-hour airplane rides contentedly and without much ado, smiling at the camera with his other cousins, eating in nice restaurants.
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Our friend Mike Young‘s taking Jim and me to task for talking about Charlie in front of him was the beginning of my understanding of why we have got to presume competence and comprehension in Charlie and ASD persons, and cognitively and intellectually disabled individuals. Presume anything less and you’ll get a frustrated individual who may very well end up agressing, utterly fed up that not only does no one seem to be even trying to listen to his words, but that false comfort in phrases like “we know you can’t help it” is bestowed on him. It is our error–our ethical failing–to equate lack of verbal ability with mental and intellectual incompetence.

Once off the plane and back in the black car, Charlie stretched his neck to see a shipyard outside of Philadelphia and to look through the railings of the Walt Whitman Bridge as we drove back to Jersey, his eyes as bright as Ngin-Ngin’s last night at her birthday party. “We’ll see you soon,” I’d said, hugging her quickly last night. “Okay, okay,” she said, and patted my arm, her eyes drifting towards Charlie, a too-big boy to be holding his father’s hand, a lovely boy who twists and holds his head and body just a bit unusually.

“It would kill her to know about Charlie,” one of my parents had once said in regard to Charlie’s having autism and telling this to Ngin-Ngin. But, watching her watch her “bi-doy“–her special term of endearment for this boy, her first-born son’s grandson, named for her late husband–and noting the sad turn to her eyes, I know Ngin-Ngin knows. She’s been telling me as much over all these years, and then some.

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