Our Autism Story: Should I Tell Her There Are No Other Programs for My Son?

“If this doesn’t work out, you’ll find another program!”

“Actually,” I said, “There aren’t any other programs for him.”

“Of course there are!”

“No,” I told her, “There aren’t.”

“Well, I’m sure you’ll find something.”

Standing next to this lovely woman with a small plate in my hand, I felt something wash over me I could not name. 

Anger? Despair? Loneliness?

Moments before, we’d been exchanging college stories.

Her daughter was Ivy League bound. I congratulated her.

Tentatively, I told her about my son Jack. I mentioned his autism. I explained the residential facility with the full-time staff, the scaffolding, and the teams. 

Sometimes there is no other program. (Photo courtesy Carrie Cariello)

Where do you begin in a conversation like this?

At the very start of it all, in a small exam room with a soft-spoken doctor and a whirling toddler, the three words that changed everything?

Autism Spectrum Disorder. 

Or maybe you jump right to the middle when puberty and adolescence wreaked havoc on his 12-year-old spirit.

Standing there, plate in hand, maybe you talk about the fear of self-harm, the way you hid the knives at night, the changes in medication.

Maybe you say that you swore you’d never turn to medication, that you once thought medication was weak and a cop-out and an easy fix.

And then you watched your son descend into anxiety in a way you had never witnessed before.

You watched him lose his smile, sleep, potty training, and joy.

You watched your husband’s eyes widen in fear, and his voice cracked with worry.

How do you tell someone you admire their nonchalance, casualness, and breeziness? How deeply do you wish you could stand in a crowded room and suggest there are more programs, chances, and opportunities?

Regarding my son and his autism, I can’t remember the last time I felt breezy. 

How do you explain the process that is obtaining guardianship?

How the state assigned your son his attorney, and you had to hire yours, and you sat at separate tables and watched your 18-year-old’s face twist and contort while the lawyers listed all of his vulnerabilities out loud?

Requires supervision while cooking. Reveals too much personal information. Doesn’t understand the concept of money.

How you watched your tall son walk out of the courtroom and reach for his father, and on a rain-soaked morning in early May, you worried you dismantled all you built?

Maybe I should have told her there are no other programs for kids like my son Jack.

If this doesn’t work, he will come home.

He will come home to the tune of $80,000 no-financial-aid-no-student loans because when it comes to autism, there is no merit money. There are no scholarships. 

He will come home. And for the rest of our lives, my husband and I will try to fill his days with purpose and meaning. And this is what keeps me awake at night.

It’s easy to assume this is a story of an autism diagnosis, softly uttered words that belied the lifelong impact. 

It is the story of a family arranging, rearranging, and arranging once more.

It is the story of the foreverness that is an autism diagnosis.

It is the story of our radical grace, reckless mercy, and tender, tender resilience.  

How to explain all of that, standing in a room full of people and balancing a small plate in my hand?

Sometimes you just can’t. Sometimes you hope you planted a tiny seed in someone’s preconceived notion of your narrative, and one day, they will look up and see color amidst the black and white. 

You hope that one day, she remembers your face and your hope and your child. 

Maybe she sees a tall boy and his father walk out of court, and she thinks back to this crowded room and the white plates and the word autism hanging in the air. 

And she will realize. Things are not always as they seem.

For Mom. I am very good. At cooking.

More Great Reading:

I’ve Never Been More Aware That I Have a Child With Autism

About 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 AutismShe lives in Southern New Hampshire with her husband, Joe, and their five children. Carrie is a regular contributor to the Huffington Post, TODAY Parents, the TODAY ShowParents.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.

Read more posts by Carrie

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