Autism After High School

“What’s the big deal? He can come home and work for the summer,” she said breezily.

The room was noisy. I was trying to balance a plate in my hand. Bon Jovi played weakly over the speakers.

I’d just confided in this woman—a stranger, really—that my son Jack is struggling in his college program. He was supposed to go year-round, but his team is suggesting he take a break for the summer. They are worried they might not have the right therapeutic supports for him. They recommended we look into other options. 

Where do you start, in a conversation like this?

The beginning? In the doctor’s office with the brown carpeting and the overhead lights, the word autism circling overhead like wispy smoke?

Or do you fast-forward to the moment at hand?

A full-time job would be difficult for him. Yes, he’s worked before. He’s washed dishes in a restaurant. He even trained to make pizza. 

But the longest shift he did was four hours. We will struggle to keep him busy. We will try to fill his days. 

You see, he needs nearly constant structure. Schedule. Routine.

How do I explain the Autism Balance Sheet that lives within my mind?

He’s made so much progress. He does his laundry. He goes to class. He keeps a budget

Just a few years ago, he held our hand in the parking lot. He’d reach for his father even when his head towered over him. Then one day, he simply let go. He stood tall on his own.

Yet he is stuck. He is shrouded in a veil of anxiety. He loops on taboo subjects. Sex, drugs, death. There is a cost, it seems, when the adolescent body races ahead of the mind. The brain must play catch up.

Summer looms large, even in the midst of winter’s chill.

I really thought this program was the fix, the cure, the answer.

Not the cure to autism, because autism can’t be cured. 

But the solution to the fill-his-hours problem. The key to life after high school—maybe even beyond.

How do you tell someone you admire their breeziness? How deeply you wish you could stand in a crowded room and suggest there are more programs, more chances, more opportunities? That a summertime job is the easy solution.

We have so few chances.

There is no easy solution. 

If Jack comes home for the summer, he will regress. He will slip away. 

I always thought we could afford whatever our kids needed.

Yet as the estimated cost of therapeutic summer camps rolls in—forty, fifty, sixty grand out of pocket–I am not as sure.

If he was sick, we would pay anything. 

If he needed insulin, chemotherapy, radiation, we would find the money.

Instead, he has the trifecta of autism, severe anxiety, and obsessive compulsive disorder.

This trifecta will not end his life. 

But it may steal it.

I want to talk to my son.

I want to have a real conversation that doesn’t involve pop culture, statistics, or the latest celebrity who died. 

It’s easy to assume this is a story of a 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 autism.

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

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

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

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

Maybe she sees a tall boy and his father holding hands 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 love it here. I want to stay.

I believe in him. Desperately, fiercely, fervently. 

Summer. A golden sun in the jealous sky. It will be here before we know it.

I want to talk to my son.