What Kind of Autism Is It?

Dear Jack,

As your mother, I worry a lot.

There are things I worry about every day, and there are things I worry about every once in a while, and then there are things that keep me up late at night while Daddy snores next to me in bed, and the house is all quiet and still.

There is no order to the things I worry about—one is not more important than another. Instead, they skitter around my brain like mosquitos across a wide, wet windshield.

I worry I haven’t spent enough time teaching you how to figure out the way a checking account works, or how to address an envelope, or how much to tip the server in a restaurant.

I worry I spend too much time apologizing for what you do, and not enough time explaining who you are.

You know, like when we went to pick up pizza the other night and you told the girl with the long dark hair standing behind the counter about two thousand times that we were getting extra cheese.

For us is extra cheese. For us. The extra cheese extra cheese extra cheese.

I caught her eye and I mouthed the words I’m sorry, when I should have told her you have autism and that cheese makes you happy. Also, that you tend to obsess about things and repeat yourself a lot because you mind is an ever-looping train on a mysterious track.

I worry I spend so much of my time worrying about the adult you may become, that I am missing the chance to enjoy the child you are.

I worry I don’t have the stamina for our steady uphill climb, and that this job is bigger than me–bigger than the both of us.

Every single time we travel, I worry we’re going to be strip-searched, because for whatever reason we named you John-Michael-Cariello-but-we-call-him-Jack-thank-you-very-much, and the security person looks at our boarding passes and asks where John is and we all point to you and then you say you are not John you are Jack.

Then there are the what-ifs.

What if someone is mean and calls you names?

What if you get lost in a store and I can’t find you?

What if, in my quest to teach and push and educate, I forgot to love you enough?

I love you.

Sometimes I have to actually remind myself to touch your cheek, or kiss the top of your head, or ruffle your soft brown hair.

I mean, every mother who just read that probably gasped and held her hand to her heart because honestly, who needs to remind herself to kiss her own son?

I do. Me. Over here.

See, I’m busy nudging your fingers away from your mouth because you bite your nails all the time, and reminding you not to swear, and putting a fork in your hands at the dinner table so you don’t mush your meatball. Constantly, I am thinking of ways to make you better, and happier, and safer, and more engaged, and less isolated.

The thing is, Jack, 99.9999% of life as your mother is second-guessing myself. I spend half my time looking in the rear-view mirror, and the other half trying to figure out your future in an imaginary crystal ball.

Should we have done more behavior therapy when you were in preschool? Should I have made you play soccer even though you hated it? Should I have cut down on the amount of Baby Einstein videos you watched?

Should we buy a house in our neighborhood so you can live close to us? Should we try a gluten-free diet?

I guess what I’m saying is, it can be hard to live in the very moment standing right in front of me.

Mostly, I want to know more about you. What do you dream about? What do you long for? What do you covet for yourself?

I mean, besides naming the next flavor of Oreos and deciding which Disney movie to rent from Redbox on Friday night and how the owner’s manual for the Toyota Siena says our minivan can tow three thousand pounds.

Maybe, just maybe, this is it for you. And that is okay. It is. It is okay. Really, it’s okay.

But if I had to be honest, my heart pulls a little when I think about a life of Oreos and Redbox and owner’s manuals, because there are so many things I want you to experience for yourself—the rush of a sweet, unexpected kiss, the drip of your own sweat after a hilly run, the satisfaction of your first paycheck.

In our house, autism is not a secret. We talk about it all the time. We talk about it to you and in front of you and behind you and with you. It is a part of our landscape, like the green grass beneath an autumn tree, or a bright yellow moon in a dark night sky.

So I don’t know why I was surprised the other night when we were driving to get pizza, and you and I were sitting in the dark car and out of nowhere, you asked a question.

What kind of autism. Do I have.

I didn’t know what to say. I mean, I can tell you the exact day you were diagnosed, and how it was rainy and cold outside. I can tell you your first speech pathologist’s name was Angela, and that you loved the pool when you were little but now you won’t go in the water at all.

But I do not know how to explain what kind of autism you have. I mean, all the doctors have come up with some labels to try and describe the way the spectrum disorder affects different people; high functioning, non-verbal, Asperger’s, Rhett’s syndrome. There’s also the good old, oft-used quirky.

The thing is, none of those labels quite fit you.

You see, they don’t capture the millions of times I’ve stood a few feet away in a store or the mall and watched as someone we’ve never met starts to talk to you, and how for maybe a minute, you look almost regular-like. Maybe a little unusual, with the way you hold your hands at your side and turn your eyes sideways, but otherwise kind of regular.

But then you start to jump and flap. You repeat hello in a stilted, wooden tone, and you bring up the subject of Toyota minivans even though no one mentioned Toyota minivans

I know that minute like I know my own breath. I know exactly when those sixty seconds are going to end, and when this person-we’ve-never-met is going to squint at you, and hesitate, trying to figure out just what’s going on with the jumping and the odd leap in conversation.

I don’t think the medical community has come up with a label to describe that scene just yet.

If I could, I would invent the label called please-he’s-trying-try-not-to-stare-at-him-maybe-we-should-change-his-name-but-I-wish-he-would-just-understand-what-a-nickname-is.

But that’s too long.

Or maybe something like more-than-quirky-but-can-carry-on-a-conversation-as-long-as-it’s-something-he-wants-to-talk-about.

Still too long.

Autism. You have autism. And autism means many things to many people.

It means delayed speech, unusual social interactions, and nails bitten to the quick.

It means a mother’s infinite worry.

It means Jack-not-John.

It means coming to terms with the idea that my life is my life, and your life is your life and maybe–just maybe–we don’t want the same things for ourselves. And that is okay.

In the meantime, I’ll remember the way a girl with long dark hair slid two pizza boxes across the counter, shrugged her slender shoulders, and offered up a piece of advice so brilliant and raw and true, it answered all the questions the spectrum universe has ever offered me.

You know, my mother always tells me that everyone’s mind is a different world.

My tender Jack-a-boo. I am glad to be in your world.