Can We Agree About Autism?

You and I, we are about to begin a short journey together.

A journey where you read what I’ve typed and I sit back on my heels, all folded hands and closed eyes, and hope you find a piece of yourself inside my words.

Let’s start with the details, shall we?

My name is Carrie.

My husband’s name is Joe. We have five kids.

Our second son, Jack, has autism.

Can we agree on something?

Can we agree autism is not a bad thing?

It is simply a diagnosis—characterized by challenges with social interactions, repetitive behavior, and communication.

Good, good. Now we have a starting point.

Perhaps a starting point to nowhere, but a point nonetheless.

Autism is not bad, but that doesn’t mean it is easy.

When Jack was little I would take his hand and lead him to the window over and over again to try to develop something called joint attention—where he would see a bird and then he would try to help me see the bird and together, we would watch the bird fly.

He never did this. Not even once. He just gazed out the window with a blank expression on his face, while the birds crossed their nameless sky.

For many of us, the story begins with the same sentence.

The doctor said autism.

Then, the follow-up line changes, depending on our point in life.

 We are looking for services.

 We’re trying Melatonin.

Sixth grade has been really hard.

What is the end game? What conversation will we eventually have with one another as we stand awkwardly in the grocery store, huddled around the avocados?

He is still at home.

He got a job but he doesn’t make enough to support himself.

We’re looking for services.

I am not trying to be negative here, I promise you. It’s just that when Jack was first diagnosed I was hopeful-bright-eyed-optimistic about autism and I actually thought he would outgrow it and now he shouts ACCEPTABLE whenever I ask him a question so you can see where all the hope got me.

I go into things with both eyes wide open now.

Words and beginnings and avocados aside, we live day-by-day, sometimes hour-by-hour.

He is home all the time. His three brothers and one sister row crew and run cross-country and go to work and the movies. They get pizza with friends.

Not Jack.

Jack goes to school, and he comes back again.

A 15-year old boy isn’t supposed to be home this much, is what I am trying to tell you. He and I spend a lot of time together—maybe too much time.

Definitely too much time.

But I love him. I love him so much and I am proud of him and I am always watching him for little signs of progress, like the other day when I said please do not shout ACCEPTABLE at me again and he said okay and then he whispered it really small.

acceptable

No one on this whole big earth can make me laugh and cry at the exact same time like this boy can.

Through my other children, with their crew practices and pizza and stuff, I have a glimpse of the end. Not the end of motherhood, exactly, but the end of the day-to-day-scrambled-eggs-do-you-have-your-permission-slip life.

I am sad about this.

But I am not so sad because maybe I could go back to work or hear myself think or at least enjoy a clean sink without a bunch of dirty bowls in it.

A piece of me will wilt inside, when they go.

And perhaps—just maybe—another piece will spring to life.

I am trying to do it right.

What is right?

One day, maybe I will look back on the landscape of motherhood and remember only the bright spots of sunshine—the time we brought popsicles to the park and sang to music in the kitchen and laughed until tears rolled down our faces.

I won’t remember how the popsicles dripped all over the seats in the car like sticky rivers of blue and green and purple, or how Jack tried to run from me in the parking lot, or the day I yelled into wide open nervous faces about the colorful mess they made.

My mind is a playground for this incessant, silent noise.

Autism is not bad.

It just is.

I am not bad.

I just am.

And yet.

Every day I try to change it.

Every day, I try to change him.

I grit my teeth and I hiss at him to stop organizing the DVD’s and to find something to do already.

I ask more of him than he can possibly give.

I take something that is not his fault—something he didn’t ask for and probably doesn’t even want—and I turn it back around on him. Every day, I do this.

We are gaining, and we are losing.

He has changed us, of course he has, just like all the magazine articles say. He has given us insight and perspective and color.

Oh, he is all sorts of color—red and orange upon green with some blue. He lights up the world with his magnificent light and he changes minds and he breaks my heart.

But what does it mean to gain insight and color, all from a boy who scarcely leaves the house?

Why, it means everything.

Autism is not bad.

It is a chance.

It is a boy.

It is a family.

It is a long, uncertain journey to appreciate the light, even if we can’t see the window.