The Story of Autism

My son Jack has autism. He is seventeen.

He doesn’t have the television kind of autism. He doesn’t know how to count cards in Vegas or solve medical mysteries in a busy hospital. He doesn’t paint masterpieces or write concertos. 

He has the regular old kind of autism with delayed communication, limited eye contact, rigidity, and anxiety.

Autism has changed the way he eats, moves, learns, and thinks.

It has changed the way I think, live, breathe, and hope.

This last year has been a time of great leaps. 

His working memory has improved. He can follow two or three step recipes more easily.

He manages his own medication.

He has a job in a restaurant. 

On Saturday, he and his father go to the bank. Jack fills out a deposit slip, and hands his check to the teller behind the counter.

He does his own laundry, he manages our Amazon’s Subscribe & Save, he helps me plan the weekly menu.

Every day after school he spreads salt down our long driveway to help melt the wintery ice.

And yet, it is not enough.

This hard-won work is not enough to earn him a spot in one of the coveted programs for teenagers like him.

My son wants more, that’s the thing. He wants a bigger life, with a wedding and a child and a driver’s license and a car. He wants a college experience. 

He has so much to offer.

Over the last month, I have spoken with the Commissioner of Education, a New Hampshire State Senator, the Director of Vocational Rehabilitation, and countless people in admissions offices across the country. 

I have filled out stacks of forms. 

I have watched my tender son sign his name in careful cursive at the bottom of the page.

I have spent hours on the phone asking questions.  

According to the Center for Disease Control, one out of forty-four children are diagnosed with autism.

And while we have many supports for the youngest of this population—early intervention, integrated preschool, paraprofessionals, speech therapists—there is precious little available after high school.

This is no one’s fault. It simply is. 

But it doesn’t make the hurt any easier to swallow.

There is nowhere for him to go.  

That’s how it is with autism. Pain races to the heart and claims it first. Then, more slowly, the truth follows.

It is heartbreak by one thousand everlasting papercuts and just as one heals, another opens.

He’s made tremendous progress, it’s true. Our progress is in the details—blue pen signatures, deposit slips, salt across the icy driveway. 

He deserves a chance. 

After all, what was it all for, if not this?

All the work and the therapies and the special school and the timers on the dinner table?

At the exact same time, the idea of him going away suspends my very breath. 

I won’t be there to take care of him anymore. 

I won’t listen down the hall for his voice at 2:52 every afternoon.

I won’t scour the grocery store for the latest kind of Oreo, or his favorite cereal, or make sure to pick up the batteries he needs.

Autism has been the tympani of my background for as long as I can remember. 

Who am I without him?

When I think about him living somewhere else, the what-if’s pile in my mind like snowflakes in a blizzard.

What if he gets sick?

What if he gets lost on campus?

What if someone hurts him, my tall, tender, younger-than-his-years son?

What if he leaves?

But what if he doesn’t?

He can’t stay in his childhood bedroom forever. He can’t stay in our small town with no public transportation. He deserves a chance. He deserves what is rightfully his.

When you send your typical child to college, you hope you prepared him for the world. 

When you send your child of autism to college, you hope you prepared the world for him.

Maybe there is no right answer. 

How can I ever let him go?

I’d give anything to know how this story ends. Only time will tell.

Spring is coming.

Life. That’s his favorite cereal. He likes the original kind, not cinnamon.