Autism, Like Race, Complicates Almost Everything

Enlarge this image toggle caption Meredith Rizzo/NPR Meredith Rizzo/NPR

Children have tantrums. They yell and grab at things that they should ask for nicely. And when a child has autism, like my son, these episodes can be epic: toys hurled across a room, screaming fits that last hours, and flurries of hitting that get triggered by even a minor change in a routine.

But when my son screams at his therapist and tries to snatch Magic Markers from his hands, I gasp. I think of Trayvon Martin.

I'm black, and so is my son. And even though at that moment he's just 5 years old, I know that an angry swipe at a white man's hands could get him killed one day.

At some of the toughest moments with my son, this therapist has been a sanity saver ... for me. A middle-aged white man, he has the warm, easy manner of everyone's favorite uncle. For my son, he has compassion and endless patience. But at times he's told my son NOT to do something, and my son has not only done it; he's also gotten physical.

My instinct is to snatch my son up and hit him with everything I have. But I don't. I watch while his therapist waits for him to get the hollering and grabbing out of his system. After 10 minutes, it all quiets down. But I'm still holding my breath.

Generations of black parents have had to have the talk with our sons, the explanation that while they have a right to do everything a white kid does, exercising those rights under the wrong circumstances could be fatal. And a transgression like the one he's committed against his doctor — one that might get a white child arrested — could get him killed. It's hard to explain, and hard for many boys to understand at first.

My kid still doesn't quite understand that he's expected to answer to his own name or deal with a broken toy without screaming. These are not social graces; these are skills that most kids develop in their early years with no special training: looking people in the eye, or saying hello, or sitting still in a chair. He has to practice these things several hours a week with a team of therapists, at home and at his special school.

It's costing a fortune, but he's getting better. Many parents of autistic kids don't have my options. They don't have the money, or the understanding employer, or the family and community support that I do. Or, what's most heartbreaking, their child's condition just doesn't respond to anything they've tried.

Most of our days now pass without problems. And when my son has a bad moment or a meltdown, he's surrounded by caring people who are trained to coax him into using his words. They know not to grab his arm or shout or make sudden moves, and that it might take two or three times for him to respond to a question. But I know that black boys like my son, even the young ones, don't get the benefit of the doubt in real life.

So what do I do? Take him out of the day care where he's cared for like a son? Tell his openhearted teachers to treat him with a little less tenderness than they do the other kids, to help him toughen up? Or the next time he gets physical, have his therapist grab him by both wrists, and tell him sternly to keep his hands to himself?

Autism, like race, complicates almost everything, especially questions of who's privileged. Almost everyone with a child on the spectrum is living with constant anxiety, and navigating from one crisis to another. When I'm with parents of kids with autism or other disabilities, I feel like I'm in one of those zones where race doesn't matter as much. Autism is its own identity; the parents and our children, we are a People. There are conversations we have with each other that we can't have with anyone else.

All of the parents — white, black, Latino and Asian-American — have to grapple with indifferent or hostile teachers, worry about cops who think their kids are acting strange or suspicious. They're fighting to create a place for their children to thrive in a world that views them as worthless or scary. And there's that fear — the one that I used to think only black parents really understood — that you could do everything right, spend every dime, minute, ounce of energy on your child, and it still might not be enough.