A friend sent me Virginia Breen’s TEDMED talk recently but I could not finish watching. I walked out of the room with my throat 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.”
So did the TED people, apparently. Again, totally understandable. And yet I found myself wondering if people would be as interested in Elizabeth’s story if she turned out to be as low-scoring on the IQ as she had first appeared. I’m pretty sure they would not be. Because by and large TED seems to be about human achievement that rocks our world, and so probably a garden-variety autism story of someone who merely rocks in their world would not do it.
I sound petty and jealous. It’s true, those ugly emotions are mixed in there, and I don’t want to feel that way, because I also felt rapt and moved to tears by Elizabeth and her mom. Elizabeth’s first typed word was “agony,” and her first sentence was “I need to talk,” at age 6. Before and since, she would storm and tantrum and hit herself and rock, like so many people on the autism spectrum. So Elizabeth looks far more “lower functioning” than she actually is (because her typed sentences and poems and high IQ score show this). One of her 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 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 often talk about my son Nat — who is 23 and has fairly severe autism — in front of him like he can’t hear. I make decisions for him all the time, from guardianship-type of issues to what color green to use for his bedroom. We all make big efforts to include him in his own life but it is not possible to do so as often as we should because we just cannot get reliable answers from him.
Nat has certain default responses, Nat does know how to type and his sentences are very small and basic. He takes perhaps three times as long to remember what to type after, “Hi, how are __?” 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.
So there it is. Nat has so little to say about what happens to him because he did not make the leap that Elizabeth made. 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 the wind beating 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 — we sit in breath-holding 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.” This accurate assessment of the film gave us something to smile about for months.
Nat’s all there but it is tough for others to remember. It’s even tougher for others to care. We are such a fast-moving people, a terse nation of texters and Tweeters, looking for the next new meme. How can any of us slow down enough to wait for people like Nat? When I think about it, and let my jealousy evaporate, I wonder if Elizabeth may be the answer after all. Because perhaps it is through the typed words of Elizabeth, that the world will eventually learn that Nat is someone to invest in; that Nat is listening, too.
Copyright 2013, Susan Senator