Why I Talk About Autism

My son Jack was diagnosed with autism when he was a toddler.

When you have a diagnosed child, the inclination to keep it a secret. My first instinct was to curl around him like a mother-shell—to protect him from labels and judgment. 

Was I also afraid of judgement?

Of course. How could I be anything else?

If I told you my son takes medication every day, would you judge me?

If I told you how I lost him the mall when he was four, would you judge me?

I was trying on a sweater. I wasn’t in a dressing room. I was standing next to a shelf of clothes, with a baby in a stroller and a toddler by my side. In the time it took me to pull the fabric over my t-shirt, Jack was gone.

Then there was the phase when he opened and shut the doors in our house a thousand times a day until one afternoon, I simply could not take it anymore and I jumped up and down and shouted at him to stop, please stop already, please stop closing the doors. 

Would you judge me for my lack of patience, my lack of vigilance, my lack of mothering skills?

Just know, I judge myself far more harshly than you ever could. 

I judge myself for all of it—the medicine in the small orange vial, the sweater in the mall, the shouting. 

Jack is seventeen now. In four short months, he leaves for a college program two hours away.

Autism is a riddle of contradictions.

It is a push-pull not unlike the ocean’s tide, or how the evening sun draws toward dusk. 

I wanted this so badly for him. Yet now that it’s upon us, I am terrified to let him go.

He seems excited. He talks about choosing a new comforter and how he can walk to the grocery store and maybe take a class in broadcasting.

But it’s hard to know how much he understands all that will change for him.

If I tell you I’m terrified to send my taller-than-average, younger-than-his-years, diagnosed-with-autism son to a college program, will you judge me?

If I told you how he struck up a conversation with a 24-year old man who later asked if he could contact him on Instagram, would you say I’m overreacting?

I pushed for this, can you see that?

I pushed for it because I was convinced he could to it. 

I pushed for it because I wanted more for him.

But what if it’s too much?

What if someone hurts him, takes advantage of him, preys on him, steals his money, hits him in the crosswalk, bullies him?

It will be my fault. 

This is my truth. 

We’ve taught him how to change a lightbulb, hang Christmas lights, shake hands, order a cheeseburger, call his grandparents, fold towels, pick out gifts, answer the door.

I don’t know how to teach him how to be suspicious. 

My initial instinct leaned toward secrecy, it’s true. 

At the same time, I knew I had to tell. 

Autism is without cure, and this vulnerable boy will one day grow to a vulnerable man

A man who may stand stock-still and watch as the flames edge closer and closer.

I had to tell our story.

I had to tell all about autism and the work and the fear and the worry.

I had to share our small triumphs, our moments of light, our gentle intentions, our radical grace, our reckless mercy, our tender, tender resilience. 

Because if compassion is a house we build, then storytelling is the key to the front door. 

It is the entrance to our messy kitchens and our lopsided picture frames and our wildly unguarded hearts.

It is the only way to open the windows and bring in the sun.

I have so much more to teach him.

Will you help me?

Will you help me keep him safe?

Will you peer into the blaze of hatred, and behold the beauty of a complicated child?

Will you show compassion for the unusual, and mercy for compromised?

Will you think before you speak, and breathe before you act, and always check for pedestrians in the crosswalk?

Will you listen for those who have no voice?

And if the fire alarm goes off in the grocery store, and you see a young man standing all alone with his hands clapped over his ears, will you lead him out the door?

With his hand in yours, please, run. Run from the heat as if you are outrunning the sun.

I need you.