At a time like this, I can’t help but think about the autistic adults who write about how they’re silenced by the community at large, and by the community of parents of children with autism. I think about how they type their complaints and post them online. I think about how they host protests and shout at the marching parents who demand a cure. I think about these autistic adults, and I have to remind myself they’re not wrong. Their needs and their complaints are real. They’re very real and they are very important.
But at a time like this, it’s hard to empathize. Here I am typing away my own complaints and posting them online. It seems, at the moment, that we’re on equal ground. Whereas, the child I shelter is at an extreme disadvantage.
Monday morning I noticed that Alex was limping. It was only a slight limp, so I assumed he wasn’t wearing his shoes properly. He’s a toe-walker—walking as if he’s wearing high-heels even when he’s barefoot or wearing tennis shoes—so he frequently scrunches his toes as deeply into the shoes as they’ll go, with the heel flapping awkwardly behind his foot. I didn’t think much of it.
That afternoon, I got a call from the school nurse. Alex was limping at school. She examined his feet and ankles for swelling, but didn’t find anything wrong. He was calm—a bit out of sorts due to a cold. He came home and continued to limp. I didn’t know what to think, but it didn’t seem to bother him much and it didn’t seem to be getting any worse. I examined his feet, his knees, and his legs for an explanation. I saw nothing worth noting.
Tuesday morning he was still limping. I checked his feet, his legs and his knees again. Nothing. I sent him to school, and he was still limping. They also noticed some mysterious signs—lack of focus, apparent lack of recognition—and worried something else might be wrong. (I still think he’s just feeling a bit off from his cold, because his mood seems fine at home. He’s a bit cranky, but we’ve seen no signs of mysterious blinking or unfocused eyes. But his limping was definitely worse.) So, I took him home, took off his shoes and socks, and examined his feet. One side seemed just a slight bit swollen, but only in comparison to the other foot. His feet are so thin, so bony, and so muscular that a little bit of swelling fleshed out his one foot so it almost looked normal. It was only in comparison that the swelling seems unnatural.
Then, I looked all over the foot that was swollen. On the bottom inner sole of his foot, in a place that’s difficult to see because of the way the shape of his foot has been distorted by his toe-walking, there is a rather large, purplish bruise. I can’t help but feel guilty, since it seems unlikely that the bruise just appeared. We must have missed it.
The place was tender, of course, and is almost certainly the cause of the limping. Still, despite the limp, it’s not slowing Alex down much. He still jumps, walks and plays around. He still resists icing it or any other form of treatment available to us.
I can’t help but think about the ways Willy or even Ben ensures they communicate their discomforts, pains and injuries. I can’t help but think of all those who are “silenced” and yet are able to articulate their hurts. I can’t help but sympathize with the parents who, when confronted with minor mysteries regarding their nonverbal children, gravitate towards the terrible “what ifs,” because I do, too. What if Alex was troubled by something serious, even deadly? How would Alex communicate it? Would we notice the signs in time?
I don’t support the ways that these parents lash out. From angry words to ridiculous claims, they devalue and dehumanize others. I can’t support that. But I can understand the fear that drives them. I share in their frustration, their fear, and their desire to “unlock” their child.
Autism didn’t steal Alex. He’s not trapped behind a wall of autism. I will never support metaphors like this to describe Alex’s experience of the world. I cherish the ways he communicates who he is to those who are willing to listen. I grieve that so many aren’t willing to listen. But how I wish, oh how I wish, that Alex could say, “Mommy, my foot hurts. No, it’s this one, down here. See!”
Giving room for adult autists to speak and to write is worth fighting for. But those words, those revealing words that Alex just can’t say…they’re worth fighting for, too.