Tell Me a Story

There is an old proverb that goes like this:

Tell me the facts and I’ll learn. Tell me the truth and I’ll believe. But tell me a story and it will live in my heart forever.

Jack, the fact is, you have autism. 

The fact is, every year one out of fifty-four children are diagnosed with this complicated condition.

The fact is, autism affects the way you eat, sleep, think, move, and learn.

The truth is, it’s hard.

The truth is, I hurt just the tiniest bit every day. 

I hurt when I see kids your age drive to school.

I hurt when I see you pick at your ear and rub your hands together.

The truth is, you work very hard.

You work hard to change the way you eat, sleep, think, move, and learn.

You do this because we ask you to, so you can be more like us. This doesn’t always feel right to me.

Behind the facts and the truth is a story of a boy. 

My son.

A lot of times people ask me to describe you, but I’m never sure what to say.

You are fierce.

Sometimes fiery.

Often forgotten.

Forgotten amidst the throngs of baseball uniforms threading their way to a bright green field.

Cheering on the game in cold metal bleachers, no one remembers the boy who does not play—the boy who sits, too scared of the announcer’s booming voice to venture outside, and see the ball fly.

You are forgotten amongst the bright lights of award ceremonies, and tuxedo prom pictures, and the honor roll.

See, while others stand in the light, you crouch in the dark.

You are a paper boy—a bunch of static words on a page.

Rigid.

Anxious.

Depressed.

The letters do not breathe or move or change. Like miniature ants at a picnic, they will follow you for the rest of your life.

Autism Spectrum Disorder.

At times it seems as though diagnosis and boy are so closely intertwined, as to seem inseparable.

Yet you can be separated, if I simply look long enough.

If I wait, and I watch, and I wonder, I will see.

And just when I am certain there is only black-and-white, the color of you rushes to the surface.

You are a one-arm hugger, and a surprise dog lover.

A broccoli-eater.

A cake-baker.

A myth-breaker.

At first, an infant who screamed and writhed in my arms.

Then, breathless chasing beneath yellow fluorescent lights in the store.

Under tables, around chairs, behind shelves piled high with sweaters.

Stop, Jack! Wait!

Now, at seventeen, you are the shape of a man, with the heart of a boy.

Where will you go?

What will you do?

Who will you be?

You are an uncertain future, unfolding as we speak.

Are you lonely?

Are you scared?

I am lonely.

I am scared.

You are every parenting mistake I have ever made.

The times I yelled and clenched my teeth until my jaw ached.

The moments I cursed your autism, and vehemently wished for a different life.

The minutes I long to take back and do over again.

You are funny.

You are honest.

You are brave.

You are a job-holder, a dish-washer, a pasta-maker. 

The fact is, you have autism. 

The truth is autism is hard and delightful and scary and original and ordinary, at the exact same time.

And the story is forever unfolding. Perhaps that’s the most beautiful part of it all.

I watch now, as you quietly dismantle the myths of the bell curve.

People with autism struggle to show affection.

He will have a hard time figuring out the workplace.

Large gatherings and groups of people will be difficult for him to tolerate.

But wait! I want to shout. 

I want to tell them how you snuggle your father on the couch and you have a job you love and every day, people make room for you.

I want to tell them how, On Thursday afternoons, you stand patiently next to a huge stainless steel machine and cut the pasta into small, even pieces. 

You load dishes and pans into a cloud of steam, and pull clean ones out the other side. 

So I do. 

I tell. 

I tell the facts and the truth and the story.

And slowly, like a prism with countless angles and light and rainbows, people see their own reflections in our story. They see tiny colorful bits of themselves and their families and their own path with autism.

My son.

You inspire others.

This is no small thing.