Someone I’m With has Autism

The other day I took my son Jack to the dermatologist. It was a routine visit, nothing out of the ordinary.

I did what I always do when it comes to Jack and his appointments.

Over the phone, I explained he has autism, and  it might seem like he isn’t listening at first. He takes a while to answer questions.  Also, he might jump around a little if he gets restless.

On the drive to the office, I took Jack through a quick social story about wearing his mask, sitting in the waiting room, and using his good words. 

He doesn’t always use good words, you see. 

We got there ten minutes early, because this boy of mine always has to be early. 

We checked in, and the person behind the desk eyed me and then eyed Jack and handed a clipboard with a bunch of forms through the window.

We sat. I fill them out. Every few seconds, Jack bent over at the waist, and rubbed his hands together.

I don’t know why he does this. 

I squeezed his shoulder. 

I got up to return the paperwork. I reminded him to stay seated. He followed me anyway. 

The person sitting at the desk eyed us both again. I mouthed autism. She hesitated, registering the word, then nodded and smiled.

We sat back down until the nurse called his name.

She asked him how his day is going. He didn’t answer.

I tilted my head in his direction and whispered autism.

Her face softened. She asked again. This time he said he was having an okay day.  

Autism.

It’s autism.

He has autism.

I say the word eleventy thousand times an hour. 

Why? Why does it have to be so hard?

You know what I wish?

I wish doctor’s offices would add autism to the list of conditions.

You know, when they give you all the paperwork and ask you to check the box for arrhythmia or asthma or allergies? 

Where is the box for autism?

Where is the box to check if the person you’re with desperately wants to tell his story, even when he can’t find the words?

Where is the box to say, listen, he is working hard to understand your smile and your eyebrows and the tone of your voice?

Listen, autism has never been a secret. We talk about it openly, and honestly. 

But he does get a little, uh, cranky when I repeat it over and over again.

The problem is, Jack’s autism is often invisible. At first you might think, huh, this kid won’t look at me when I talk to him.

Then you might notice the way his fingers flutter, and how he he rubs the bridge of his nose. 

Autism is a slow reveal, is what I am trying to say. 

I can’t take it away. As much as I want to, I can’t take away the shame and the fear he feels every single day of his life.

He knows he has it. 

I want you to know he has it.

I want to get past the awkwardness and the fake smiles and the confused looks and the whispers. 

I want to get to the heart of the matter.

I want you to understand what he has, so you can begin to learn who he is.

He is a teenager who jumps and thinks and wonders and tries.

You’ll never forget this tall son of mine.

Maybe you’ll tell your colleague in the break room how he made you smile when he asked if you’ve ever pet an iguana. 

Or maybe you’ll go home and sit at dinner with your kids and you’ll tell them you met a boy who was unlike any other boy you’ve ever met. 

He is, you know. He is unlike anyone you’ll ever meet in your lifetime. 

Please, add the box. 

You could do this for me, and for him.  

You could add autism and crack the whole thing wide open.

You could help me make autism ordinary and regular and whole and right. 

I cannot take his diagnosis away, it’s true.

But I can give him his dignity.

I can protect his heart, and help him feel ordinary, if even for a moment.

Please, make it the tiniest bit easier for my complicated boy.  

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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