This Is What Autism Looks Like

My son's autism is a fierce opponent.
04/18/2017 08:50 pm ET Updated Apr 19, 2017

First of all, I want to apologize for tonight.

I’m sorry about the way my son Jack stood in your way while your daughter was singing her solo.

I’m sorry we could not get him to sit down and be quiet.

I’m sorry you heard him tell my husband Joe—his father—to shut up.

This was probably not the night you expected. I imagine you were hoping to go to the middle school concert, sit quietly with your family, and watch your lovely daughter sing her lovely song.

Our family kind of got in the way.

Instead of your nice evening, you watched my husband and Jack whisper-argue in the second row. Jack was wearing his big black snow boots and he had the hood to his winter jacket pulled up over his head because it’s really cold in New Hampshire right now even though it’s almost April.

Whisper-arguing is the worst. Everyone knows this. It’s like arguing but in whispers and everyone can still hear what you are saying.

Dad, dad, DAD—

Jack, sit DOWN and STOP—

Dad, can I—

You can tell me when the song is over. Please, sit—

SHUT UP and LET ME TALK!

I have an Uncle Bob who lives in New York.

Technically, he isn’t really my uncle because he’s my grandmother’s brother, so that makes him my great uncle, but for some reason we always called him Uncle Bob. I don’t even know how it got started but my family is a little weird, so there you go.

Anyway, my Uncle Bob is very tall and he has bright blue eyes. He’s had trouble hearing for the entire time I’ve known him, which I think must be unfortunate for such a tall person because he is constantly dipping his head down to figure out what people are saying.

Some people wear their disability on the outside. They use a wheelchair to move around or a hearing aid to listen or a service dog to navigate bumpy sidewalks. They take insulin to regulate their sugar.

Other people, like my son Jack, wear their disability on the inside. See, he has autism, and it is tucked away deep inside his brain. It is invisible.

Oh, sure. He leaves some clues. He never quite looks you in the eye, and he jumps around all the time. His speech pattern is unusual. But by the time you connect the dots and think to yourself, huh, maybe something is up with that kid, you’ve probably already made up your mind about the kind of person he is.

Quirky.

Weird.

Rude.

Disruptive.

I wish we could see it. I wish we could draw his autism on a piece of paper or swirl bright, colorful paint into images of  rigidity, and anxiety, and the way all five of his senses jumble together when the world gets too loud or too bright or too itchy.

I can’t lie. I, too want him to act like the rest of us. I want him to sit down and be quiet and keep his body still on the metal folding chair.

I mean, honestly. We do all of the work ahead of time. We tell the social stories and explain the schedule and practice jumping jacks in the parking lot before we walk through the door. We promise treats for good behavior.

And after all this, sometimes we still run into problems, like tonight. And the terrible awful question begins to circle in my mind and I cannot stop it.

Why can’t he just behave himself, goddamit?

The truth is, sometimes he can’t. Because he is not like the rest of us, even if he kind of looks like he is.

I know, I know. I still have to try and try all the time to see if we can get his mind to bend and shift and change to our expectations. We have to praise the right behavior, and frown upon the wrong.

But it can feel futile, because autism is always there, lurking in the recesses of his mysterious mind. It is a fierce opponent, cloaked as it is in darkness. And there are times when I wonder why, why I work so hard to change something that is truly, factually a part of who he is.

I mean, if he was paralyzed, I wouldn’t expect him to get up out of his wheelchair and take a step just because I told him a social story about how all the other kids on the playground walk.

I wouldn’t feel so terribly awful guilty about giving him insulin to regulate his body’s production of sugar the way I feel guilty about giving him Clonodine to regulate his anxiety.

And if, like my Uncle Bob, he couldn’t hear a dang thing and he shouted, “What is she SAYING?” over the music, I smile over my shoulder and pull him close and put my mouth near his ear and murmur an answer.

My son has a disability that is hard for people to see and this is the single most biggest thing my husband and I struggle with on a day-to-day, minute-to-minute basis.

He can, but he won’t.

He would if he could.

He isn’t.

He should.

My son has a disability and it is invisible to the rest of the world and this means that sometimes people think he is kind of a jerk even though he doesn’t mean to be.

I’m sorry he stood right in front of you. I’m sorry if we ruined your evening. I want you to know is he isn’t bad. I mean, sometimes he can be a little bad, but this time that wasn’t it.

He is trying.

I am trying.

We are trying.

It’s complicated.

You see, I want to make sure we are doing everything we possibly can to make him the best person he possibly can be. This means pushing against the familiar in the hopes of gaining ground and making progress.

It means we have to continue to balance on a beam as thin as dental floss; finding the perfect equilibrium between his can and his can’t, the will and the won’t.

Because if we don’t challenge him, we’ll never know just how far he can go.

In the meantime, I hope the next time you see a boy scream at his father, or stomp off in his boots, or have trouble looking you in the eye, you’ll remember our story.

My son has a disability. Long, wiry ribbons of black and white tether his soul to schedule, and routine, and fixation. They are unbending; unyielding. At times, they are stronger than he. They are stronger than me.

This is what rigidity looks like.

He wears an upturned hood to block out the noise, and downcast eyes to avoid your stare. He is a boy who is unwilling—or unable—to enter our world. Instead, he waits for us to enter his.

This is what sensory processing disorder looks like.

In his mind, one thousand magpies fly shrill against a purple night sky. The deep roar of an uncaged lion vibrates inside his ribcage, while a sneaky green snake slides up his back.

This is what anxiety looks like.

And on a cold night in the early spring, a tall, dark-haired man stands outside of the middle school. He is freezing. He doesn’t have a jacket because he rushed to get his agitated son out of the packed auditorium so he would not interrupt the song or stand in the way, and in his hurry he left it sitting on the back of the chair.

Together, they pace the sidewalk. Every few seconds, the boy jumps. He still wears his hood. His eyes are wild, and his cheeks are pink.

Dad. I want you. To hear me.

I know, buddy. I’m listening.

This is what autism looks like.

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