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

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

“Actually,” I said, “There really 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 and the scaffolding and the teams. 

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 and 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 never witnessed before in your life.

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

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

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

When it comes to 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 own 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 how 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 and 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, our reckless mercy, our 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 just 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