Autism Doesn’t End in the Summer

“I’m sorry, Mrs. Cariello. Your son doesn’t seem to be a good fit for our summer program.”

Spring always brings us up short. We’re not made for it.  

Just as the landscape comes to life in all its green glory, every obligation imaginable calls our name.

Yet hiding right behind every fresh new blossom is summer.

The thing is, autism doesn’t stop during the summer. 

It doesn’t take a break for holidays, or vacations, or after high school.

Seasons of the calendar, it seems, are oblivious to a diagnosis that requires nearly constant structure, support, and routine.

This was perhaps the fourth call I’d had in as many days, as I research potential summer programs for my son Jack. Every single one contained the same message. Jack isn’t the ideal candidate. He is either too high functioning or too low-functioning—descriptions of the bell curve I’ve come to loathe.

This isn’t anyone’s fault. It simply is.

What is it like to have the kid who doesn’t fit anywhere?

Let me tell you.

It’s maddening. It’s perplexing. It’s exhausting.

Life skills. These two words are on repeat in my life. Program directors tell me they teach life skills, the days are structured around life skills, students can expect to improve life skills.

Jack, by very definition, already has basic life skills.

Autism’s balance sheet dances across my periphery like so many musical checks and balances. Constantly, I measure his triumphs against his vulnerabilities.

Will it always be this way? This reduction of boy to paper—heartbeats into facts?

I hate it. But I don’t know any other way.

He can do his laundry.

He is excellent with hygiene.

He manages his medication and emails the doctor for refills.

He cooks, he cleans up afterwards, he likes to bake and share treats with others. 

Yet he is deficient in social skills. Reading the room. Understanding boundaries. 

He latches onto topics that are considered taboo—sex, drugs, alcohol. 

He lingers on the periphery of conversations long after they stopped including him.

He has trouble navigating crowds and crosswalks. He cuts people off on the sidewalk. He bumps into strollers and blocks doorways.

As he gets older, this is becoming more and more of a problem. Autism isn’t cute any longer. At 6’5”, social gaffes take on a whole new meaning. 

What is it like to have the kid who doesn’t fit anywhere?

Let me tell you.

It breaks your heart into a million pieces every single day.

Now, summer is upon us. After a year in a supported residential space and taking college classes, Jack will move home for two months.

He doesn’t want to come back. We gave him the chance to make a life for himself. It may not look like everyone else’s life, but it’s his to call his own. And now we want him to return to a place that he outgrew like a childhood sweater.

It used to keep him warm. 

Now, it just makes him itch.

I admit, I am also apprehensive. For the last ten months we’ve worked to disentangle from one another—to interrupt the bond of codependency familiar to those raising vulnerable children. He relies on me less.

I am concerned we will fall back into old patterns of companionship and dependency.

Four phone calls. Four different answers that echoed the same sentiment.

What is it like to have a child who doesn’t fit anywhere?

Perhaps that’s the wrong question.

Maybe we should wonder how we surrendered to a life we didn’t ask for, but we love all the same.