A Handbook for Autism

The late afternoon sun dances across my desk. It’s more orange than yellow. Here in New Hampshire, autumn is well on its way.

I lean back in my chair, a Word Document open on my laptop. It’s blank.

I feel first-day-of-school nervous. Going-into-labor nervous. Except instead balancing on the ledge of newly sharpened pencils or a sweet-smelling baby clothes, I am trying to cobble a few words together that may turn into something bigger.

People ask me for advice sometimes – advice for how get through puberty and keep your marriage intact and not lose your ever-loving marbles through it all. They want to know how we launched a child with autism into the wide, wide world.

What can I tell you?

My name is Carrie. I was named after my mother’s cousin. Her other cousin was named Alveena. In retrospect, Carrie suits me a little better.

My husband is Joe, formally Joseph. For reasons that have never been explained to me, he has no middle name. Perhaps it’s an Italian thing. Or maybe by the time he rolled around – the last of six kids – they’d simply run out of ideas. 

Joe and I have been married for twenty-five years. 

We have five kids. 

Our firstborn, Joseph, is twenty. He is a junior in college. He is gentle and sweet, but he will eat your leftovers without asking.

Our second son Jack is nineteen. He just started his second year in a residential space. He takes two classes at a nearby college. 

Charlie is seventeen, all dark eyes and racing heart. I liken him to a puppy, or a kite. Open the door and out he flies.

Our daughter Rose is sixteen. She just got her driver’s license. Watching her back out of the driveway, hot tears pricked my eyelids, knowing I’ll probably never need to pick her up from crew practice or a babysitting job again. I always enjoyed the time in the car with her, even if I was late a lot. 

Our youngest son Henry is fourteen. He is taller than me, but I still think of him as a little boy. He hates when I say this. 

Jack was diagnosed with autism when he was eighteen months old. It was a chilly day in November. He was wearing overalls.

I called Joe as soon as we got home. This was 2004, and cell phones were big, clunky devices that weighed down your purse. Talking from the car was impossible.

We lived in Buffalo, New York. I took the highway home from downtown. I got off on the exit and drove through our neighborhood. I felt drained, but also calm. 

I pulled into our driveway and parked near the back door. Jack had fallen asleep in his car seat. I carried him inside and put him on the couch. I started a Baby Einstein DVD for him to watch. He loved those DVD’s. I needed to think. Yet my mind was empty, like a cloudless sky.

Suddenly I felt nauseous and hot. Stripping off my coat, I walked through the dining room and into the kitchen.

I leaned against the small table in the breakfast nook and picked up the phone. 

I dialed Joe’s number. He paused after I delivered the news. Then he suggested we order pizza for dinner. And we did.

The truth is, we had no idea of the path we were about to travel. Looking back, perhaps that was for the best.

When it comes to autism, there is no instruction manual.

I can only tell you all the ways we tried to navigate every facet of life alongside autism – religion, adolescence, social media, online dating. Mealtimes, post-high school programs, medication, marriage.

I can only write about the way autism offered our family a newfound opportunity to reinvent ourselves. It brought us back to the basics; dinner around the table at night, dance parties in the playroom, adventures on Sunday afternoons.

I can only explain how we tried to stretch this boy Jack without breaking him. How, again and again, we stretched and nearly broke ourselves.

How we surrendered to a life we didn’t ask for, but we love all the same.

When it comes to autism, there is no formula. 

Nineteen years later, I rediscover this truth all the time.

There are only failed attempts, moments of mercy, offers of forgiveness, and the gritty determination to begin once more.

To me, good writing means you’ll see a piece of yourself inside my words.

Great writing, however, will infinitesimally change the way you live your own story.

Though I have no assumptions about where I fall on this sliding scale of letters to page, I offer them to you anyway.

Take what you need. Leave the rest. 

Perhaps you’ll feel validated, curious, upset, confused, hopeful.

I hope you’ll read about something we tried – timers at the dinner table, emotional thermometers taped on the wall, couples’ counseling when we felt like we were becoming unmoored – and you’ll try it yourself. 

And maybe you or your kiddo or your marriage will inch just the smallest bit forward. Ten more minute in a restaurant, a meltdown that was shorter than the last, stolen kisses in the hallway.

And you’ll share this tiniest piece of yourself to another mother, sister, father, husband.

After all, one story begets another.

All we can do is learn from each other.

All we have is each other. 

It’s getting dark now, as the sun begins its descent into the dusky night. In a few minutes, I’ll get up and head into the kitchen to make dinner. It was always one of his favorite rituals, this boy of mine. 

People ask me how we let him go. How we untethered ourselves in order to give him a chance at a more independent life.

I never have a good answer for these questions. All I can say is every time it rains, I wonder if his own sky is metallic with clouds. And I hope he remembers his umbrella.