Living in Autism’s Shadow

I think of you as a person sometimes. I really do. You are the third wheel, or the uninvited guest to a party—the one who shows up empty-handed and eats all the chips with the good dip and stays way after everyone else leaves, telling boring stories and bragging about the glory days of high school.

Some days you make me laugh. Other days you make me clench my fists in rage and say mean things and swear under my breath. Once in a while you make me cry.

You are everywhere, yet I cannot touch you. I cannot see you. You are invisible. No, not invisible, more like a shadow I constantly see out of the corner of my eye.

You are autism, and you live within my boy.

I love him. But I hate you.

I hate the way you keep him up at night.

I hate the way you control his body like a marionette with strings. Especially lately, the way he rubs his hands up and down in front of his face—it reminds me of someone trying to warm himself by a campfire.

I hate the way you force him to painstakingly search for words while the rest of the world rushes over him in a tidal wave of jokes and irony and language.

I hate that he’s lonely, and I hate that he asks me ten million times a day what time we’re eating dinner because his world is ruled by schedule and routine.

But you want to know what I hate the most? I hate how small you make his life. He has absolutely zero interests. No hobbies. No pastimes.

He has never built anything with Legos, or picked up a book and leafed through the pages.

He doesn’t like to play catch, or draw, or race remote-controlled cars. We have to force him to ride his bike.

He used to enjoy swimming but now he complains the water is too dirty and he’ll only wade in up to his knees when we go to the pool.

Screens. He craves screens and movies and pop music.

I mean, it’s always been this way. He knew how to work the DVD player before he knew how to talk. All day long, I’d catch him shoving in Baby Einstein videos and pressing play. It’s the only thing he wanted to do.

Then it was Mickey Mouse Playhouse, and the Wiggles, and Thomas the Train. As he got older, he turned to Minecraft, and now it’s YouTube videos and Disney movies and playlists on his ITouch.

When we take the ITouch away he wanders listlessly around the house and whines and pleads. He counts the minutes until he can get it back. It is the saddest, most maddening thing, watching a teenager have absolutely no idea how to entertain himself.

Me and you, we spend the day engaged in a tug-of-war, except instead of a long rope, we each hold of one of his hands. I pull him toward me—into a world full of bike rides and chapter books—and you yank him backwards into a deep spectrum abyss where apparently Nicki Minaj holds concerts around the clock.

I know you think you are in charge. You aren’t.

Okay, maybe you are just a little bit but that doesn’t mean you are the boss of me, or of him.

I’m not scared of you.

Okay, maybe I am a little bit scared but that doesn’t mean I won’t be brave.

Apparently you didn’t get the memo that I was going to have a regular old family with ordinary kids and everything. Never, in my wildest imagination, did I picture having a child who has to go to a special school so he could learn life skills instead of algebra.

Okay, when I was pregnant with my first son for some reason I was nervous he would be born with cleft palate, and when I saw his face on the sonogram, and he was fine, I thought I dodged a bullet. I thought I was safe.

But you, dear autism, are the smoking gun of shattered dreams.

Now I read a thousand articles about how people with autism are broken and they have it because they ate too many apples with brown spots or because their mother didn’t love them enough when they were babies.

I shove down my shame like a piece of rancid cheese that went bad in the refrigerator. And even though I know better, the questions still snake around my psyche and whisper in my ear.

Did I cause this?

Did I do this?

Is it my fault?

Autism, I have examined you from every angle. I have held you up to the light, and looked at you in the dark. I have said your name a thousand times.

autism oh he has autism yes it’s autism my son has autism autism autism

I hate you. I really do.

You are giggling now. I know you are. You are smirking and grinning in the corner, and your eyes are shining at me like the smuggest Cheshire Cat. You know I could never hate you.

Because, like the quintessential tug-of-war, I too am pulled in two directions at once.

For all the things you make him—rigid and bossy and lonely and sad—you also make him funny and lovable and charming and smart. In some absurd way, you make him whole. To love him is to love you, too.

I love him.

And maybe once in a while I cry for the boy who might have been, but every single day I smile for the boy who is.

He isn’t broken.

He doesn’t even like apples.