Our Glass House

Hi. 

My name is Carrie.

I have five kids, and my second son has autism. His name is Jack. He is sixteen years old.

I don’t really care about what causes autism.

I mean I do, a little bit.

But mostly, I don’t.

At this point, I’ve heard it all. 

I’ve heard autism is caused by pesticides, Windex, poor maternal bonding, and bottle-feeding.

Also, vaccines. 

The poor maternal bonding bugs me, if I’m being honest. It hurts. I loved this boy from the second he was born. I loved him even when he cried and scratched and pushed me away.

People often think children with autism are rude/badly behaved/obnoxious/loud. 

I don’t care what people think.

Until I do. 

He does seem rude at times. And he is most definitely loud.

But it’s only because he is hiding beneath a brittle shell of anxiety and fear. Also because he is very blunt, and he doesn’t know how to modulate his voice. 

Still, it’s no excuse. We work every single day on manners, and the right tone of voice, and how we need to keep certain comments in our bubble thoughts. 

He wears glasses.

He loves cheeseburgers with ketchup.

He thinks Mulan is one of the best movies of all time.

It’s not about the autism.

It’s always about the autism.

If I let it, my entire relationship with my son can be consumed by his diagnosis. It permeates the very air we breathe.

I ache for him.

I ache for all he may have had.

Life with a spectrum child is a series of small paper cuts. I see a boy his age on the corner bouncing a basketball, and I feel a small sting. Or I read a post about a 16-year old in town getting a driver’s license, and my heart squeezes.

Over time, these small wounds become scars. They heal, just in time for new ones to open up, and bleed.

What causes autism? I don’t know. 

Some say vaccines, but that’s not our story. Jack came out clutching an IEP between his wrinkly newborn fingers, if you will. He was born with it. It was imprinted upon his spirit in utero. 

Autism doesn’t discriminate. 

It doesn’t consider status, or socioeconomics, or race, or geography. 

It doesn’t happen to bad people.

It’s not because you forgot a few prenatal vitamins, or you didn’t hold him long enough, or you gave him some formula because you couldn’t produce enough milk.

It took me a long time for me to believe these things for myself, and I want you to believe them now. Do not waste one second of your time worrying about maternal bonding, or spraying your windows with Windex.

It’s not about the Windex.

Autism strikes at will. It is senseless, and ruthless, and beautiful, and raw. 

I don’t care what causes it.

Until I do.

Until I wonder if we should figure it out so my kids can have their own kids and not worry about the random lottery of DNA resurfacing in their own offspring.

This is the essence of an autism mama’s brain. Like a deck of quirky cards, my mind shuffles and rearranges—I care and I don’t but at the same time I do. 

Again and again, this boy forces me to look in the mirror, and consider who I am.

Who am I?

Who is he?

I don’t care what caused his autism.

I don’t care that he has a diagnosis.

I don’t care about what he has. I care about what he can do.

Will he ever enjoy a cocktail, or fall in love, or write a check?

I am waiting for all this boy may become.

We are running out of time.

Yet we are unable to change our pace. One day, one foot in front of the other, is the very most we can do.

Autism is a masterpiece, full of contradiction and music and color and light.

I don’t know what causes it. For me, it is an ongoing conversation.

In the meantime, I will continue to add splashes of green and blue and purple and orange to the black and white brush strokes of a diagnosis. We will fill in autism’s canvas.

For sixteen years, I have imagined a perfect intersection of science and humanity as a kind of utopia. There are lots of cheeseburgers, and courage, and self-driving cars.

There is no fear.

In the distance—almost on the horizon—stands a glass house. 

It glints and sparkles in the sunlight. It is breathtaking. There are lots of windows, and a strong foundation.

If you look closely, you can see a sentence etched into the front door. This one sentence—this collection of eight words—well, they are very, very big.

They are a shored wall against a flood of uncertainty.

They are a million bright stars in an otherwise dark night.

They are peace and forgiveness, power and pride. They are everlasting absolution.

He’s exactly the way he’s supposed to be.

I will never know what this is like for him.

Forgive yourself.