The Sign for Autism

When it comes to my son Jack and his autism, I wish for a lot of things.

I wish I could rid the world of cars that backfire, doors that slam, and people who shout like maniacs for no reason.

I realize this isn’t about autism per se, but whenever Jack hears a loud noise he doesn’t expect, he screams. He screams, and then I scream, and it’s all very stressful.

I wish we could dial back on the repetition a little bit.

Oh, the repetition! All the phrases and words and helpful reminders looping on repeat, twenty-four hours a day.

If he’s not looping about, say, the weather, or the fact that we’re out of flour, then he’s calling for me. Nine hundred times an hour, this boy calls for me.

Mom.

Yes! What, Jack?

Nothing.

Mom.

Yes! What, Jack?

Nothing. 

Mom.

Yes! What, Jack?

Nothing.

It is exhausting. It is draining. At times, it has reduced me to tears.

I know it sounds like I’m complaining, but I’m not. I’m simply reporting.

Okay, maybe I’m complaining a little bit.

I wish there was some kind of a universal sign—something I could say or do to make other people understand he has autism.

A sign to tell you he is rigid and diagnosed and can’t read facial expressions and doesn’t have a lot of boundaries.

A sign to explain that he is jumping and grunting because it’s how he soothes his agitated body when he’s distressed.

A sign to help you understand why I hold his hand in the parking lot even though he’s a tall boy of fourteen, and why he wiggles his wrist until his long fingers look limp like noodles, and why he goes to a different school.

A sign would make my life a lot easier, to be honest.

I know, I know, we have the puzzle piece and the blue light bulbs and all that, but I need something else. A code word, maybe, or a subtle gesture. Something everyone, old and young, can understand—something that crosses language barriers.

Like when we go to a restaurant with the Japanese hibachi tables. You know, the kind where you all sit around the big hot grill and the chef lights an onion on fire and tries to get people to catch pieces of zucchini or egg or whatever in their mouths?

We don’t do so well at those places.

The chefs with the tall hats just don’t get it. I’ve tried everything. I’ve tried catching their eye and shaking my head a little bit. I’ve tried waving my hand in the air to distract them from the egg-throwing.

I’ve even tried to pretend I’m sticking a fork in my eye, all slow and exaggerated, to give the hint, but it never gets my point across. They just keep throwing food in his direction, until he starts to scream and eventually drops a very loud f-bomb.

That word, I am afraid, is universal in nearly every language.

Maybe you’re wondering why we even bother with Japanese hibachi restaurants. I mean, why would we bring our special-needs son to a place he so clearly hates? It’s a good question, actually. You are right to ask it.

And here is my answer: Jack hates many, many things. He hates a particular movie theater because the screen is too big. He hates one certain grocery store because they play classical music and that reminds him of, in his words, black death. He hates taking the back roads home because one time he saw a squirrel dart across in front of the car.

He hates squirrels.

So what do we do? Do we sit in our house and let autism rule our world?

No, we don’t. We pick our battles. We help him grow and stretch without breaking. We take the back roads every once in a while, and we keep a close watch for the squirrels.

I just wish there was a good way to tell you about all of this.

It is not, for one single second, because I am embarrassed for him. Please, don’t ever think that.

I have never—even once—been embarrassed of my son with autism. Not even when he filled my entire cart at Target with tubes of hemorrhoid cream while I was trying to have a conversation with someone I knew about travel basketball.

I am very hard to embarrass, to be honest.

It’s just that there’s this whole period of awkwardness and shuffling and I’d rather get over all that so we can get to the good part.

The good part is when you know he has autism. It’s when your eyes open just a little bit wider and you nod your head the tiniest bit and you look at him with compassionate, and warmth. Maybe you smile.

See, Jack has a disability, only you can’t see it.

Sure, you see the jumping and hear the looping and all that, but it just looks like he’s weird, or being kind of a jerk.

He doesn’t require a service dog, or a wheelchair, or a special parking spot.

He requires soft lights, no fireworks, and onions that don’t burst into flames.

He has a disability, only it’s invisible.

Does that make it any less important? Or real?

I don’t think so.

Do you?

Most people build a life around friendship, and learning, and marriage, and family.

At this point, my son has built his life around a strict schedule of mealtimes, Disney movies, and reminding me 2,983,465 times that we are out of the right kind of milk.

And at this point, I am not sure much will change over the next twenty years or so.

What I am saying is, he will probably live his life differently than you and I.

Does that make it any less important, or real?

I don’t think so.

Do you?

At times, he reminds me of a bird trapped inside of a golden cage, hemmed in by the strong, unyielding bars of rigidity and anxiety and flour.

And it’s not just the gilded bars, but the smallness of his world. Inside his confinement, he paces and mutters and jumps. He is utterly alone, and isolated. He trusts no one.

Will he ever fly?

He is fourteen years old. I am running out of time.

He is my son and my job is to show you that he has autism and then to show you it’s okay and explain that we’re working on the swearing.

I need to show you so you like him and you will try to understand him and maybe one day you’ll even hire him for a job.

If I have to cry a thousand tears and answer ten thousand questions about milk, I will help him fly.

He will fly, if my own life depends on it.

In my darkest hours of the night, this is what I tell myself.

He will fly.

In the sunny light of day, I am less sure.

You can’t imagine what it’s like to love someone with autism.

Or maybe you can.