The other day, when we were on our way to the grocery store, you asked me a question.
Whenever you ask a question, it doesn’t sound like a question. It sounds like an announcement because you don’t lilt your voice at the end or change your tone at all.
How do. Grown-ups have it. The autism.
I was a little taken aback. I mean, we were sitting in the car and just two seconds before we had been debating whether chocolate cake is better than strawberry.
I told you the obvious answer is strawberry, remember? It’s true. Everyone knows this. I told you the Queen of England and Nicki Minaj and even the Pope himself like strawberry better than chocolate, so it is, indeed, a fact.
I was trying to wind you up a little and to make you laugh. See, you don’t laugh a whole lot. You hadn’t smiled in days.
Anyway, we were talking about different flavors of cake and I thought it was a nice little back-and-forth conversation—which doesn’t happen all that often with you—and just like that, you changed topics on me. You got all serious.
Will I. To Drive.
When you were first diagnosed, I was actually happy. Can you believe that? I was happy when the doctor looked down at you, toddling around the exam room, and said quietly, “Mrs. Cariello, I believe he has autism.”
See, I was happy to have a reason for all the stuff you did and didn’t do. I could explain why you took the vacuum cleaner apart all day long and clapped your hands over your ears and screamed if you heard a dog barking. Finally, I could tell all the other parents at birthday parties and play dates that you aren’t just weird or quirky or strange, no, you had a diagnosis.
Oh, Jack? Well, he has autism. That’s why he doesn’t answer you when you call his name.
For me, the doctor’s words were an umbrella in the midst of a storm. I was more than glad to stand beneath it, and take shelter from the rain.
For months afterward I’d lie awake at night and imagine what you’d be like in kindergarten. Shy, maybe—on the quiet side because your speech would probably still be a little delayed. You’d be taller than the other kids, with a backpack over your shoulder.
I pictured you in third grade, sitting on the bus next to your older brother Joey. Maybe you’d wave to me through the window.
I thought about fifth grade, and your years as an awkward, gangly teenager.
I was scared, you see. I didn’t know what the future held for my quiet, mysterious toddler, so I went ahead and invented my own.
I guess you could say I pictured you recovered—shedding your autism like a springtime caterpillar in your cozy cocoon, all at once turning into summer’s bright, incandescent butterfly.
I did not picture you as an adult. I never got that far.
We have a long road ahead of us. Next month, you will be thirteen; a teenager, and you are almost none of the things I first imagined you would be.
You are not shy.
Your speech is not just a little delayed.
You have never once waved to me through a window.
You have not recovered. If anything, your autism cocoon is tighter—more snug—than ever.
Do they for. Get the married.
It’s like the two of us are standing in the lobby of a very tall building. We are waiting for the elevator, craning our necks and looking up at all of the floors. Each one is labeled with the usual stops for the average person who does not have a diagnosis.
And the hardest part is, Jack-a-boo, you may not visit every floor. The spectrum elevator just might whiz on by some of the stops altogether, while others may take longer for you.
When I picture you as an adult, the reality of your diagnosis hits me like a ton of bricks.
Every day, someone will find you annoying, or weird.
Every day, someone will think you are dumb.
Every day, you will be misunderstood.
Every day, you will feel as though you don’t belong.
You know how April is Autism Awareness Month? We call it that because it’s the time of year dedicated to raising awareness about Autism Spectrum Disorder.
This means it’s our chance tell the whole entire world that yes, autism can be hard, and scary, and mysterious, but sometimes it can be pretty cool too.
I don’t know when it started exactly, but now lots of families put blue lights on their houses and wear special t-shirts with ribbons on them, the ones that look like they’re made out of puzzle pieces.
We’ve never changed the lights on our house to blue. We don’t have any t-shirts. In fact, we’ve never done anything at all to celebrate Autism Awareness Month. I don’t know why. I think one year I looked around for a blue light bulb but I couldn’t find one so I just gave up and forgot about it.
Will for me. To be a father. Like Dad.
The thing is, I spend three-hundred and sixty-five days a year, seven days a week, explaining autism to the world around us.
Oh, Jack? He has autism. You just have to give him a little extra time to answer you.
Jack? Yes, he’s making great progress, thank you.
My son Jack? He does have trouble sleeping, but we’re working on it.
When I’m not explaining the particulars of the spectrum disorder—the rigidity and the anxiety and the medication and all of that—I’m telling people how we feel about it.
He and my daughter love to bake together.
It was a tough summer but he’s finally settling down.
Puberty? Please, don’t even get me started.
In fact, I spend so much time spreading awareness around, that I forgot about you; my eternal child, my tentative boy, my hopeful son.
Where for. Will I work. For a job.
I forgot to tell you all the things I think every time look into your earnest face. Let me tell you now, as the April’s trees grow their slow green buds and the ground thaws beneath our feet.
You aren’t dumb.
You aren’t weird.
You are everything I never dreamed you could be.
When the world feels cold, and cruel, and unforgiving and life’s elevator has ground to a frustrating halt, please remember that behind you stands a family.
You belong here. You belong to us.
Happy Autism Awareness Month, my sweet Jack-a-boo.