Clark is a lovely child, his teachers write on every alternative report card he’s ever received. Always singing, polite and happy, kind. Clark is a joy to have around.
To which I can only think, well—in small doses, I’m sure he is. But that “politeness” is mainly imitation, that “kindness” is him choosing to not interact with you, and isn’t it nice that you get to give him back at the end of the day, when his exhaustion and anxiety reach their fever-pitch and he loses every shred of language, however hard-won? When all he wants to do is stamp in a circle and babble, jump up and down in front of the TV, then fall on the floor and scream till we put him in bed?
And I have help, for which I’m duly grateful. And he’s so much better than he used to be. Better all the time. But every step forward brings new traumas, new difficulties; as his understanding of the world widens, his ability to deal with it fluctuates wildly. He cares what we think, and that’s wonderful, but he also worries, and we have no way to soothe him. He loves us and he shows it, and that’s precious—unbelievably so, considering the women I’ve sat next to in various waiting rooms, unable to tell if their sons even know they’re present, if they can tell the difference between their mother and a nurse, or their mother and a lamp—but he also gets angry when we ask him to do anything more than whatever it is he wants to do at that exact moment, yelling, kicking, weeping. Heartbroken by his own inability to be other than he is, especially when levelled against the world’s inability to do the same.
And I know how he feels, but it really doesn’t help. Nothing does.
Nothing ever will.
“Hey,” I said, tapping his cheek. “Hey! Look at me.”
“DON’T LOOK AT ME!”
“I’m going to have to go, bunny. I need—”
“YOU’RE NOT GONNA HAVE TO GO! DON’T NEED!”
“Well, wouldn’t it be nice, but I am, and I need you to be—hey! Look at me, Clark. I need you to be good for Daddy, while I’m gone. I need—”
“DON’T BE GOOD FOR DADDY!”
“Look at me, and do be good, do you understand? DO YOU UNDERSTAND ME?”
Which is, and always has been, the question.
I still remember the day Clark was diagnosed, when the nurse practitioner watched him climb single-mindedly up onto a chair next to the bookcase on top of which she’d stuck the only one of his toys he’d shown any interest in—a talking Thomas the Tank Engine, predictably because little boys with autism love Thomas; it’s the huge faces, the dichotomous freeze-frame mobility of the features, the way you can always tell what they’re thinking. He stood there teetering dangerously, making grabby hands. He knew three adults in the room, all of whom loved him equally, and it never even occurred to him to ask any of us for help, or even “mand” us . . . grunt, point to what he wanted, pull us toward it. He might as well have been alone.
That this is, in fact, the very definition of the term in question—autism, to be forever alone, either shunning interaction or unable to sustain it—is an irony that is by no means lost on me, or any other parent of a child on the spectrum. But it is what it is—that’s all you can ever say about it, and simply wishing it wasn’t will never make it so. If my aunt had nuts, she’d be my uncle; if things weren’t the same, they’d be different. You just have to deal with it, which I do—mostly. Inadequately, probably, a lot of the time.
Around the same time we discovered exactly how Clark was, what schools now call “exceptional,” Asperger’s Syndrome—hitherto classified separately—was folded back into the black rainbow of autism spectrum disorders. Since then, people have increasingly lobbied to further extend that spectrum, embracing things like OCD, ADD, and the like, which I can understand, in theory; all of them share a certain amount of apparently infinitely recombinant symptomology, albeit with mysterious and baffling variations, giving rise to the truism “If you know one child with ASD, you know one child with ASD.”
“We’re lucky,” Simon says, and I agree. Clark sleeps through the night, and always has. He thinks of eye contact as a hilarious game. He has emotional affect; he makes jokes, rudimentary and repetitious though they might be. He is, in the main, sweet-tempered: he doesn’t strike out at others; he isn’t self-injurious. He rarely has full-bore public meltdowns anymore, probably because we know what the danger signs are—crowds, echoing spaces, or having too many choices, or too much noise—and plan around them. Still, we can’t avoid everything. No one can.
“Wouldn’t it be nice if he could just snap out of it?” a supposed Educational Assistant once said to me, at the school just before the one he goes to now. She was an older Hungarian lady, used to babysitting “special” children of a very different variety, raised to the status of professional intervener because they had literally no one else to fill the position. And I remember how passionately angry that comment made me, even though on some level I recognize it’s something I’ve thought myself.
Wouldn’t it be nice? But he won’t, and I know it. And sometimes it hits me, like a wrecking ball—the fact that my clever, charming boy can’t be fully evaluated in terms of intelligence, because he’s (currently) incapable of taking standardized tests. That at the same age he clings to picture books like Frog and Toad and Home for a Bunny is when I was reading at a Grade Thirteen level (back when there still was such a thing). Those are the times I look at him and wonder if he’ll ever hold a job, ever live even semi-independently, ever love or be loved by someone other than me and Simon.
Superimposed overtop, I see a future vision of a tall, handsome man with bad teeth (because he won’t brush them unless you make him) and a full beard, wandering down the street singing Disney songs, while everyone around him laughs and p
oints. In the distance I see cops kept from tasing him only by the fact that he’s white. And next to him is myself, a grim little old lady, still leading him through life by the elbow.
I expect to still be worrying about all this when I die. Which—after all these years of rote, existential dread—has actually begun to terrify me more than simply knowing I’m going to.
Are my intentions good? I’d like to think they are. But I know myself well enough to know that intent doesn’t always matter, not the way it should. What matters is getting things done, walking the line between caring and micromanagement, the way you would for any other kid. Making them aware that the world is full of other people, all of whom have expectations and most of whom don’t love them, or even know they exist. So I struggle to shape myself for him, to keep all this in mind and work from cue to cue. Because I love him, because he’s part of me. But this is all so far away from what I find natural that, a lot of the time, I find it physically baffling to deal with—I want to reject it, to yell at him, to refuse to play along. And—
—sometimes, I do. More than I should, no doubt. But sometimes, I just can’t help myself.
It’s how I’m made.
Because I was born fucked up, too, and I always knew it, though I guess in retrospect it never mattered quite as much as I thought it did. But my version of fucked up was never going to be enough like his to help us meet in the middle; I come from the other end of the spectrum. And I remember sitting next to my mom, going down the list of Asperger’s Syndrome diagnosis points one by one, showing her how much they reminded me of how I’d been as a child, an adolescent, before socialization kicked the worst of it out of me. “Little Professor Syndrome,” check. Rabid enthusiasms, check. Inability to converse without monologizing, check. Vocabulary far exceeding normal age standards, check. Frustration, check. Inability to form friendships, check. Violent tantrums, check. Self-harm, check. Check, check, check.
“Don’t you see?” I asked her. “This is why this happened. Because I’m just like him, except it’s all on the inside.”
She looked at me then with what might have been sympathy, but what I read (at the time) as contempt, the way I’m prone to do. Because—another check—I’ve never really been able to tell what other people are thinking just by looking at their faces, unless those faces are up on a movie screen.
“Come on, Lois,” she said. “It’s bad enough as it is. Don’t try to make this all about you.”
Back in the here, I could see tears in Clark’s eyes; my own stung my nose, making me even angrier. Making me repeat, in turn: “Do you understand?”