Our Autism Family

When our family walks into a restaurant, people have been known to put down their forks, and watch us troop by them.  

Diners have also been known to request a different table once we sit down near them, but that’s another story altogether.

When I see—and feel—their eyes on us, I wonder what they notice first.

Is it our five kids?

Or the ratio of four boys to one girl?

Maybe it’s the way my son Jack crawled into the Japanese hibachi place on his hands and knees. That was a real showstopper, if I’m being honest. 

Jack hates Japanese hibachi. He doesn’t mind the food so much, but he hates the fire and the clanging and trying to catch a piece of chicken in his mouth.

You see, Jack has autism.

He doesn’t like loud noises.

He doesn’t like surprises.

He especially doesn’t like chicken flying through the air. It doesn’t appeal to his sense of order, if you will. 

My son Jack has autism. This makes us an autism family. 

When he doesn’t sleep, we don’t sleep.

We triumph in his success, and hurt when he regresses.

We hold his hope in our collective hands, and we wonder how to best defeat the wolf of anxiety.

Every day, we work to keep him here with us, and out of the spectrum grip.

In our house, autism is not a secret. It’s something we talk about regularly, and openly. We celebrate his strengths, and gently remind him no, we don’t remember the last time we saw a blue Toyota Prius because our brains don’t always work the same as his. 

We live out loud. 

We are an autism family. 

We’ve lost a little, and we’ve also gained.

We’ve lost a brother who will throw a ball in the yard.

But we’ve gained a boy who is unlike any other boy you will ever meet in your whole life.

In our family, there is a lot of compromise. 

He isn’t always interested in what the rest of us want to do. He hates hiking. He’s not crazy about board games, or puzzles.

But he does it. He complains and swears a lot, but in the end, he laces up his sneakers and he walks uphill. Every once in a while, he pulls up a chair, and rolls the dice.

So we try to do the same for him. We only pick Japanese hibachi once in a great while. We

We listen to what he has to say. 

My oldest son is best at this. He listens with his whole heart. He looks into his brother’s eyes as if they alone hold the meaning of the stars and the sun.

And who knows? Maybe they do. 

We are an autism family.

We skip movies if the screen is too big and we choose restaurants based on the crowd and we know there is no such thing as fair. Fair has left the building, so to speak. 

We work on autism’s timeline.

Some of us learn to drive and contemplate college and umpire Little League games and act in the school play.

It hurts.

It stings.

The gap is widening. It is so wide, in fact, it’s as though I am raising all different kinds of humans. 

Who knows? Maybe I am. 

We believe in him.

No one believes in him more than his father.

This man—this Italian patriarch with the warm smile and the stern glance—well, he is determined. He is sure. 

He is sure and determined his son will do everything he wants to do. 

And who knows? Maybe he will. 

We are an autism family. We are good, and true, and whole, and messy.

We don’t always get along, or agree, or keep our big opinions to ourselves. 

I mean, we fight about the dumbest things. We fight about who drank all the milk and who stomped around and woke everyone up in the morning.

But we work hard to come together again—to repair after the rupture. 

We are hard to embarrass. We don’t care if you need to crawl into the restaurant, as long as you join us for dinner. 

We are flawlessly imperfect, but we are honest.

We love him.

We know him.

Autism is a listener’s language. It speaks to those who hear, and seek to understand. 

Still, we struggle for fluency. We get impatient, we talk too fast, we forget to listen. 

We are learning. 

After sixteen years, we are learning and listening and trying and failing. 

One day, how will they look back on this time? What will they remember?

I hope they remember the way he set the table, awaiting their return from crew/baseball/dance/cross country.

I hope they remember how their father dragged us from dealership to dealership, researching cars with every safety feature available, imagining his special son may one day sit behind the wheel.  

I hope they remember all the times I made room for them, even when autism took up a lot of space.

We are an autism family. 

We are full of slights and petty resentments and belly laughs and  chicken.

Autism is our house. 

It has windows and doors and lots of light. It has a strong foundation, and a table with lots of seats.

We built it for him.

And also for us.