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A friend sent me Virginia Breen’s TEDMED talk about her non-verbal autistic daughter expressing herself through typing. While watching, my throat was tight with—anger? Jealousy? Passionate admiration? But my torrent of feelings weren’t aimed at Virginia, or her profoundly autistic daughter Elizabeth—they and their story were wonderful, warm, engaging, moving. What bothered me was that after learning that Elizabeth could type and measured “Genius” in the IQ test, her school “took a greater interest in her.” I wondered about people like my autistic son Nat, who at 29 can’t speak clearly or well, and he cannot type well either. In fact, Nat has developed certain default responses, “Yes,” most of the time to get you to stop talking to him. Nat’s typed sentences are also fairly rote, very small and basic. He takes perhaps three times as long to remember what to type after, “Hi, how are you?”
Virginia’s daughter Elizabeth looks far more “low functioning” than she actually is—her typed sentences and poems and high IQ score illustrate this. She is proof that there is so much more to our autistic kids than meets the eye. One of Elizabeth’s most compelling responses to the question, “How did you learn all this?” was “I am listening.”
I am listening. Elizabeth’s sentence blew me away. This is what so many autism parents like me believe about our own children, but forget. We forget it every single day, because we see so little of the evidence we need.
I’ll admit to it. I sometimes talk about my son Nat in front of him like he can’t hear or understand. I try not to. But it is not always possible, if we need to discuss him and he wants to stay in the room. From time to time I turn and summarize for him. But have to make decisions for him all the time, from guardianship-type of issues to what sort of living arrangement he might like. Of course we ask him, framing the question in a way he can understand. We all make big efforts to include him in his own life but it is not always possible to do so as often as we should because we just cannot get reliable answers from him. When we type together, I watch him, whispering softly to himself, thinking his own thoughts, perhaps collecting them so that he can finish his sentence. I watch and I wait. I do not want to prompt him, cue him, fill-in his blanks. I want his thoughts to be all his. I want him to have that, at least, in a world where he gets to decide so little about his own life.
We did have a stint with the very controversial method known as Facilitated communication but ultimately it felt fraudulent to me. It feels fraudulent to many, yet life-changing to others. I do see how other autistics with similar issues to Nat have indeed learned to type with another’s support on their wrist, or shoulder; these people have revealed inner lives no one knew about beforehand. I believe FC has helped them. But for Nat—who already knew how to type and talk, however limited it was—to see him typing complicated, accurate sentences with certain abstract concepts (“Mom’s got my back,” was one) just did not sit right with me. He just does not talk that way, and could I really trust the therapist was not guiding his hand? The proof of the pudding came when Nat was able to tell us he did not want to go back.
So there it is. Nat has little to say verbally or otherwise about what happens to him because he did not make the leap that Elizabeth and others made. Or perhaps the correct approach has not been developed yet. I’ll keep on the lookout for as long as I’m alive. But for now, he’s got his own way and we work hard with that. That same stuff that Virginia learned was inside Elizabeth might very well be inside Nat, but so far it is buried under a sandstorm in his head. I imagine a wind beating at his perception, coating it with sand and debris, and that only once in a while can he find a space to see through, breathe, and express himself. When we type together—on Facebook every weekend when he is home for a visit—I sit in tight breathless silence for long minutes at a time, waiting for the word to be born.
Most of the time Nat’s sentences are not profound, but they do pretty much say it all. When he came back from seeing “Life of Pi,” with his social group, my husband asked him, “What was the movie about?” Nat quickly responded, “Tiger.” Or when he summed up “Spiderman and the Spider-Verse” succinctly but accurately: “You jump down.” These terse but excellent assessments of the stories gave me something to smile about for months.
Nat’s all there but it is tough for others to remember. We are such a fast-moving people, a nation of speed-texters and Tweeters, looking for the next new meme. How can any of us slow down enough to wait for people like Nat? Maybe we start by meeting them halfway, and by listening before talking.
