Did I Tell You?

Did I tell you my son has autism?

It’s usually one of the first things I mention, not because I want you to feel bad for him, or for us.

I tell you about my him so you’ll know right away I don’t want to talk about nonsense.

I don’t want to know about the practice schedule for baseball or how your kiddo is double booked with a recital and travel basketball.

I want to know who was the favorite child in your family when you were little.

I want to know about your first kiss, and the best book you ever read, and who will remember the way your face looked when you were young.

That’s not the only reason I tell you about Jack. I also tell you because I have this gripping need to share his story. I hope if I tell you all about him, then there will be the tiniest steps toward progress, and change.

For example, perhaps you are in charge of a great big important company.

One day, a young man comes in for an interview. He took the bus to get there. He is dressed casually, and he doesn’t look you directly in the eye when he speaks.

Maybe you’ll sit across the table from this young man, and you’ll think back to a story you once heard about a boy named Jack. You’ll remember the way dress pants made him feel like he was going to tear off own skin, and how badly he wanted to drive a car.

And so you hire this young man, and he goes on to do great things in your big important company–things no one else even considered possible.

Did I ever tell you what it’s like to have a son with autism?

I’m sure I did. It’s not exactly something I keep a secret.

Having a son like Jack is everything you would expect. It is every cliché, every wives’ tale, and every platitude ever spoken.

It’s hard.

It’s exhilarating, and surprising, and ordinary, and funny.

It’s complicated.

Let me give you an example.

A long time ago, before I had kids, I watched a documentary about autism. A young mother sat before the camera and described the way her son clicked his teeth all day. Sometimes she simply could not bear the sound of it, and she whispered, “Shut up shut up,” under her breath.

I was appalled! Imagine! Wishing your own beloved child would shut up—one with special needs, no less!

Fast-forward to me, standing in my own kitchen, muttering shut up shut up under my breath when 14-year old Jack won’t stop murmuring the first seven letters of the alphabet over and over again.

He does this now. The alphabet thing. Did I tell you that?

A-B-C-D-E-F-GEEEE.

I whisper shut up to myself because it doesn’t work when I say it out loud. He doesn’t get it. He hesitates for a second, and goes right back to what he was doing.

[Editor’s note: it also doesn’t work if you shriek that he better stop singing that song or you will light your eyelashes on fire.]

Did you know living with autism can be a little like living with fire?

There is the long, slow burn of grief, accompanied by occasional bursts of joy and light. All of this is punctuated by the hot flames of epic meltdowns.

Yet there are moments of calm, and warmth, and hope so powerful, they glow in the most beautiful orange color you’ve ever seen. It’s like sitting inside of a sunset.

I think what bugs me the most is Jack’s disability is somewhat invisible. He doesn’t walk with a limp, or need a hearing aide, or ride in a wheelchair.

Instead, he screams if anyone bumps into him by accident in Chipotle. He wears headphones to block out the fireworks on the Fourth of July. He picks at invisible spots behind his ears until they bleed.

That’s why I have to tell you about it, do you see? So you don’t think he’s weird, or rude.

Of all that autism has handed me, I guess I never expected the sameness of it all—the same conversations over and over again, the same need for routine, the same letters of the alphabet.

A-B-C—

JACK!

What.

STOP. Stop with the alphabet already.

Okay. Yes.

[beat of silence]

A-B-C-D-E-F-G

Trust me, if it isn’t letters, it’s something else. He’s running the trash compactor at regular intervals, or rolling his meatball between his fingers before he eats it, or jumping around the kitchen at 6:00 am in the morning.

For someone who doesn’t like loud noises and has so very little to say, this child of mine sure does make a lot of racket.

Well, I guess the meatball-rolling thing is quiet, but you know what I mean.

Did I tell you what it’s like to have autism?

Probably not, because I do not know.

I do not know because he cannot tell me.

I want to talk to him. I want to talk to my son.

But I can’t get past the banalities. Some days, it’s like living with a stranger—one who is constantly demanding to see the latest Disney movie, but a stranger nonetheless.

He has no friends.

He doesn’t want friends.

I mean, who doesn’t want friends?

My son, that’s who.

He rejects people. He is critical about kids his own age. He sneers when other boys try to talk to him. Psychology calls this his “armor”—his way of keeping people at arm’s length because he’s so afraid they will reject him, or hurt him.

Did I tell you how I wonder?

I wonder what it’s like to feel invisible.

I wonder if I can give him what is rightfully his.

I wonder what will become of this child of mine once I am gone.

Mostly, I wonder if it’s better to occasionally watch brilliant sparks of orange lighting up the dark sky, or to never feel the sun at all.

I am rooting for him.

Did I tell you that?

I am watching this all unfold from the sidelines of my own life, and I am rooting for him.