We truly never know what goes on inside another person’s head, and this drives me crazy, in particular with my autistic son. Nat is a quiet man. He gives nothing away. Ever since he was a little guy, he has preferred to speak his own language, a sing-song pattern of sounds that he matches with certain birdlike tilts of his head, and hand flutters. When he does speak English, you can see that it is very hard for him. He uses a mixture of long, long pauses and terse, choppy phrases that cut right to the chase—no wasted words for him. I believe he is quiet by choice, maybe because English speech has always been a challenge for him.
But I want him to talk, because I want to know what he does with his days, what he observes, what he wants. What captures his imagination. Of course I hear some news from the caregivers in his group home, the staff in his day programs, and he visits on the weekends. He would spend a lot of time on the couch just looking around and talking in Nat language and I worry about this. Should I be interacting with him somehow? Intercept the autism and channel it into neurotypical conversation? But no, that feels unnatural, denying him his agency, and more about my own discomfort than his. He has a right to not speak. But when he becomes anxious and isn’t able to tell us what’s wrong, his frustration can escalate into self-injury, so we schedule things for him to do, like Special Olympics basketball and swimming. I bake complicated cakes with him that take hours to decorate. Baking is fun for both of us, a true mutual passion.
But his innermost life: what spaces does his mind like to linger in? What does he really like? Can he even express it? One thing I do know is that Nat is obsessed with schedules, with time. Most of his worries are about when things will occur, and in what order. Nat’s calendars are everything to him. He will read them over and over like a favorite book, and he loves to have me read them, too, and comment on them. As a little boy, on his way back from school one day he called out from the back seat, “school school school school school no school no school” and my husband realized with a tearful joy that Nat understood the concept of a week. These kinds of discoveries are sparks in the night that is autism.
Nat’s silence, and the fact that he now lives in a group home, means that my hunger for Nat news is insatiable, so I follow a steady diet of his programs’ Instagram feeds, searching for a glimpse of him with his group at a museum, or with housemates at a park. Recently as I clicked and scrolled, there he was, at a dance, with Cathy, one of his favorite caregivers from the group home. A dance? How had this happened? It wasn’t on the group home calendar. But somehow, the day program director had worked things out with the group home manager so that Nat and his housemates at Melville House could attend the dance. In the siloed world of Autism Adult Services, they almost never cross the streams of daytime with residential services. But there it was. I was stunned and so pleased that this had happened and I posted about it on Facebook, how truly blessed we were that all of these links in the chain of Nat’s life were strong and connected. And best of all, I had nothing to do with it!
The next day brought another surprise. I had a text from Christina, the day program director. She had seen my Facebook post and she wanted to let me know that neither she nor the group home manager had instigated Nat’s taking part in the dance.
So how had it come about? It was Nat’s idea, the director told me. What? How? “Nat happened to read another individual’s schedule,” the director told me. “He saw that there was a dance coming up, and he told Tommy, his staffer, ‘Melville dance,’” meaning that he wanted his group home to attend the dance. Tommy, who is very good at his job, understood immediately and put the wheels in motion. A week later, Nat reminded Tommy, saying ‘Melville dance.’”
So Melville House went to the dance, and all because of Nat. My man of few words saw something he wanted, and just like that, he spoke up, and he made it happen. I guess when it matters to him, he will talk. This means he can advocate for himself. It also means that when Nat talks, the good people in his world listen. So much growth for him. So much hope.
And me? I could have danced all night.
