Telling the Story of a Boy with Autism

When I walked into the store, you were standing in the produce section near the fruit. The first thing I noticed about you was your jacket. I love that color blue, and it looked nice with your dark hair.

I walked past you, and I almost tripped over an empty basket someone had left in the middle of the aisle. I glanced over my shoulder and I smiled. I rolled my eyes a little. “Who would leave their basket like this?”

You looked up from your bag of apples, and said, “A retard, that’s who!”

For just a moment, the world stood perfectly still upon its axis.

You see, I have a son with autism.

He is almost seventeen.

His name is Jack.

Jack almost always comes with me to the grocery store. I guess you could say it’s kind of our thing. Every Saturday he helps me make a list of what we need for the week, and he tries to sneak in all of his favorites, like Hershey’s syrup and marshmallows.

The boy does love marshmallows.

He isn’t with me today because he’s in school.

He goes to a special school for kids who have trouble staying regulated and suffer from crushing anxiety and have issues with executive functioning and cognitive flexibility.

He has issues with executive functioning.

If he was with me, would you have said it?

If you had noticed the way I have to keep my hand on his shoulder as we cross the parking lot so he doesn’t run away from me when a car is coming—a great big tall boy with size fifteen sneakers—would you have said it?

If you had seen the way he looks at the gum and candy at the check-out aisle, eagerly trying to decide which one to pick, would you have said it?

If you had heard his voice—the sweet, tender voice my husband and I waited months, no years to hear—would you have said it?

I guess what I’m asking is, would you have said it to his face?

If you knew about all the times I wake up in the middle of the night and think about how he has no friends—not a single one—would you have said it?

If you had the chance to spend just ninety seconds with him, and you listened to him talk about how he wants to bake a chocolate cake for his brother’s birthday, would you have said it?

What if I told you how my husband, Joe and I are starting to take steps to plan for his future—to research different kinds of living facilities and community options and public transportation?

Forever. Forever we have to do this.

The thing is, I can explain to you the meaning of cognitive flexibility and deregulation and self-stimulation without so much as batting an eye. I can break down the mechanics of Autism Spectrum Disorder until you’re able to recite the common characteristics of the bell curve yourself.

I can describe the fatigue that comes with raising a child who repeats the same question forty-nine times in an hour. I can tell you how we decided to put him on medication because his anxiety became so debilitating, he could barely leave the house.

All of that, well, that’s easy.

The hard part is telling you the story of a boy.

My boy.

The hard part is bringing him to life for you in this grocery store, while he’s miles away at a special school for special kids. 

I want you to hear him.

I want you to know him.

Mostly, I want you to see him.

I want you to see my son.

Listen, I know you’re a good person. You are a good person who blurted out a scary word.

The thing is, I can’t convince you it was a scary word. I can’t change your mind by rolling my eyes, or hissing, or sneering. That would just lock you into your opinion, like a skeleton key into a rusty deadbolt.

I have to talk. I have to tell.

Word by word, sentence by sentence, I have to build a bridge.

I have to hold out my hand, and invite you to my side of the valley. I have to do this without judgment, or reservation. I have to do this because I care about you and I care about him and I care about autism.

It is the hardest work I have ever known.

The truth is, three decades ago we thought people who flapped their hands should live in institutions with high fences and sound proof walls.

Twenty years ago, we thought autism was a character in a movie called Rain Man.

One minute ago, you thought it was perfectly fine to shout the word retard in the middle of a grocery store.

Imagine what we’ll think tomorrow.

This is a picture of Jack.

This is his face.

Can you see him?

He always picks gum. In the check-out aisle.

I love him with the fiercest heart.

Written by, Carrie Cariello

Carrie Cariello is the author of What Color Is Monday, How Autism Changed One Family for the Better, and Someone I’m With Has Autism. She lives in Southern New Hampshire with her husband, Joe, and their five children. Carrie is a contributor to the Huffington Post, TODAY Parents, the TODAY Show, Parents.com. She has been interviewed by NBC Nightly News, and also has a TEDx talk.

She speaks regularly about autism, marriage, and motherhood, and writes a weekly blog at www.carriecariello.com. One of her essays, “I Know What Causes Autism,” was featured as one of the Huffington Post’s best of 2015, and her piece, “I Know Why He Has Autism,” was named one of the top blog posts of 2017 by the TODAY Show.

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