It’s even worse than it sounds. When I was a child psychologist, I took pride in calling a spade a spade. Nobody left my office without an accurate diagnosis. I frowned on parents who avoided sharing their autistic child’s diagnosis, not wanting them to be “labeled.”
Then I had my own child with autism, and I wimped out too.
I only said the A-word out loud when I had to—on insurance forms, with other professionals, and in bookstores and Internet searches. Otherwise, my son was “just our James.” If pressed, I’d say he had “special needs” or “some developmental delays.” People rarely asked for more detail after that.
I knew what the word autism meant, in all its complexity. When it came to almost everyone else, though, I couldn’t be sure.
I put James in the autism closet, and he had some good company. Upworthy profiled Mickey Rowe, a successful stage actor with autism who said, “I think on a personal level for me it is much better to keep these things secret, to stay in the closet about them.”
Now that I’m the mom, I don’t want to lead with the A-word. Autism is only a part of James’s identity, just as extreme nearsightedness is only a part of mine.
The nearsightedness analogy shows that we both have a problem for which we didn’t ask, nobody’s at fault, and there’s no cure. Accept it and move on. The analogy falls apart pretty quickly, though. My glasses help me more than any of the current treatments for autism help James. What’s more, you see my Coke-bottle lenses right away, not so with James’s autism.
When James was 5 years old and about to enter private kindergarten, we visited the Playseum in Washington, D.C., a labyrinthine collection of small rooms, each with a different play theme: cooking, Western, arts and crafts, princess, rock ‘n’ roll. James got all dressed up in a black, glittery outfit complete with cape and boots, and took to the mini-stage with a toy guitar. As he strummed, he stomped his feet and bent his knees, jutting his hips out fetchingly. I snapped pictures with his baby sister on my lap.
“Isn’t he cute!” another mother said. “He’s really got the rock star moves down.”
“Thanks,” I said, smiling at my little boy. Not just cute, but cool.
“All the weirdos in the world are here right now in New York City,” James sang in a gravelly voice.
And then he threw up both arms, looked to the sky, and growled, “He killed his grandmother and tortured his mother’s dog. My kinda guy. Carnage!”
The other mother turned white, gathered up her daughter, and fled before I could say anything. I said to the remaining mother too pregnant to move, “I’m so sorry. He has autism, and he’s echoing a line from Spider-Man: Turn Off the Dark” just so she wouldn’t assume that James was a budding serial killer.
I felt like a traitor. When James was outrageously morbid, I rushed in to declare he had autism. He’d been just as autistic a few minutes earlier, though, when he’d been cute, and nobody had known but me.
I wasn’t leading with the A-word, but I was doing something worse. Instead of allowing James to be the complex person he is, I slapped a label on his negative behavior so another mother wouldn’t judge me.
Sure, people are more enlightened about autism than they’ve ever been. They know about the successful people, the people with special interests and skills, all the good times to be had. But what sort of awareness campaign trots itself out only to apologize for negative behavior? Mine, apparently.
I’m not talking about a T-shirt campaign or going around saying, “This is my autistic son, James.” With fleeting interactions, I have to let it ride.
But there are a lot of people who may not realize James has autism. The neighbors who rely on him to feed their cats when they’re out of town, the man who loves to throw the football with him, the dry cleaner employees who compliment him on his manners, his sister’s piano teacher, who notices how tenderly he encourages her. I haven’t spelled out James’s diagnosis for these people.
If I want people to understand the full range of autism, I’m going to have to. I knew this before motherhood temporarily made me a wimp, and now I’m learning it all over again.
What’s good for everyone with autism is good for James too.