Open Society

Disabled people know precarity intimately.

What I did instead was pace, for about 8-10 hours a day. Back and forth, back and forth, wearing footpaths in the grass until my Dad would make me move to a different part of the yard so the grass could have a chance. (It wasn’t usually able to grow back. There were plenty of days where 10 hours was an undercount.) Sometimes I would walk on my toes; sometimes I’d adopt big, stiff postures, or bounce up and down. I’d move my arms high or low or to the side, but my arms were always moving — I’d flap my hands, or shake a stick, or, most often, shake a book in my hands. The book had to be just the right size, with just the right kind of paper, held in just the right spot. I destroyed dozens of books over the years this way; pretty soon, my parents learned to buy me cheap paperbacks specifically for this, to keep the other books safe. My mouth was open and my face was vacant. Sometimes you could hear me talking to myself, and if you listened, you would hear that I was scripting, or reciting lists. Usually I was silent. I would avoid other children and I refused to play with my own siblings; I wanted to do this instead. I would do this at preschool, at family gatherings, at church, and in the store. I would do this all day. It alarmed everyone. I did this through high school. I learned not to do it where other people could see, but the intensity didn’t abate. It only began to slowly fade away after I turned 17, replaced by other stims and some cognitive-motor changes and, perhaps, growing up.  If you saw it when I was little, you can still find the traces of it now — I still pace when I’m working out a new idea. I wrap beads around my wrist instead of shaking a book to pieces. I still spend hours most nights doing repetitive activities while my mind wanders.  No one considered this “functional” play. Every expert saw this as something that was very likely harming my development — or, best case scenario, as an indication that I was having a hard time, with the behavior as a barometer for how bad things were. My parents ultimately didn’t try to get me to stop outright (for which I am profoundly grateful), but everyone agreed that it would be good if I could, and any fleeting reduction was celebrated or, at least, seen as a sign of progress.

My play — not my “behavior,” my play — was deeply functional, for me. Those hours and hours of often silent scripting while regulating my body let me develop a deep bank of fluent language that other people could understand. When I can rattle off fluid paragraphs to you about a topic, it’s because I’ve put in those hours of scripting and practice, even today — and because, long before I was practicing how to explain autism or talk about policy, I was practicing different sentence structures for hours in the backyard. That was not at all apparent from an outside point of view. But that’s what I was doing. And when I wasn’t scripting, I was making and reciting lists and schedules — and that was giving me a structure for understanding my world.  And most importantly? It just felt good. It was calming and reassuring. I am told that is one of the main developmental purposes of play, in fact.