Jack, you have something called high-functioning autism.
This is very, very good.
At thirteen, you talk.
You can bathe yourself, and pick out your own clothes, and pack your lunch for school.
You can go to a restaurant, and order from the menu, and for the most part—if it’s been a calm day and the lights aren’t too bright and it’s pretty quiet—you sit in your seat and eat it.
You bake cupcakes, and boil water for soup, and stack the dishes in the dishwasher.
The other day I looked up what high-functioning autism actually means, because after all this time, I still wasn’t sure.
High-functioning autism (HFA) is a term applied to people with autism who are deemed to be cognitively “higher functioning” (with an IQ of 70 or greater) than other people with autism. Individuals with HFA may exhibit deficits in areas of communication, emotion recognition and expression, and social interaction.
This right here, this is what you might call the bare bones of high-functioning autism. It’s the outline, the sketch, the black-and-and-white version of a boy. But we all know there’s a little more to it.
It’s a play date with lots of toddlers, except one toddler insists on playing with the vacuum in an obsessive, compulsive way that makes all the other parents shift their eyes and look down at their feet.
It’s a mother’s deep longing to wrap herself around her boy and hiss that it’s okay, what’s the big deal, lots of two-year olds like vacuums.
It’s a lonely, tear-filled car ride home.
It’s cringing during Thanksgiving dinner, when a 10-year old boy keeps interrupting everyone to talk about all the features on a Toyota Sequoia, even though no else one is talking about cars.
It’s a seemingly normal exterior, wrapped around a tender combination of anxiety, social missteps, and obsessive behavior.
April is Autism Awareness month. Did you know that, Jack-a-boo?
I’m not sure when it started exactly, but lots of families put blue lights on their houses and wear special t-shirts with ribbons on them. You know, the ribbon that looks like it’s made out of puzzle pieces.
We’ve never change 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 on the idea.
This year, I realized that in the onslaught of articles and ribbons and shades of blue, I almost forgot about you.
Yes, you. My son. My complicated child, my early-morning-waker, my cupcake-baker, my Toyota-talker.
After all, you are the one with autism.
I mean, I never actually forget about you. That’s nearly impossible. If anything, you are the tympani of my waking day, the drumbeat of my heart, the whistle of the wind as it blows through the trees.
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.
I know, he does look, um, normal, sometimes.
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.
Oh, the humming? Well, you get used to it.
Why, yes! He does know a lot about Toyotas! It’s very, uh, exciting.
Well, you just kind of make peace with it. You know, after a few years.
I never tell them how you feel about it. Because I don’t know.
Okay, that’s not true. I have an idea about how you feel about it. If I had to guess, I would say you feel like you have one foot in the regular old ordinary world, and one foot balanced upon the spectrum’s bell curve. You are struggling to keep from sliding.
It’s a slippery slope, this high-functioning business. And 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 feel as though you don’t belong.
Every day, you will be misunderstood.
When it comes to high-functioning autism, there is a cost. There is no currency to measure the price you pay–the price of knowing people think you are annoying, or weird, or dumb. The price of feeling as if you will never belong.
I’m scared now, Jack. I’m probably more scared than I’ve ever been.
It’s not a scary feeling like when we go to the movies and I jump out of my seat, or the time Daddy came up behind me and startled me. It’s a slow tingle, almost a burn, which spreads throughout my body every now and again.
Can you feel it? Can you feel the panic radiating off my skin like the rays of the sun?
It’s like we 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 above us, and they’re all labeled with the usual stops for the average person without a diagnosis—a regular trip to the happily-ever-after.
But you may not stop on every floor. This spectrum elevator we’re riding, well, it just might slow to a crawl at some spots, and skip other levels altogether.
Daddy and I, we always thought you would make each stop, or at least most of them. We really did. Even when you were a small, chubby toddler who played with the vacuum for hours, we thought this would all turn out okay in the end.
It’s only now, on the cusp of your fourteenth birthday, that we are beginning to realize how different the ending may be after all.
I’m starting to let go of all the things I previously held so close to my heart–the dreams and goals and visions I imagined all these years. This is very, very hard for me. It might take me some time.
I want you to know this: letting go does not mean I am giving up on you.
Did you hear me? I’ll say it again. Letting go does not mean I am giving up on you.
I will never give up on you.
You—my eternal child, my tentative boy, my hopeful son.
You aren’t dumb.
You aren’t weird.
Behind you is a family.
And you belong to us.
There is more than one way to climb to the top of a building.
Happy autism awareness month, my Jack-a-boo.