Sometimes people ask me what kind of autism my son Jack has.
I don’t mind. I know they are simply trying to find purchase upon the slippery spectrum ice of the bell curve. And the truth is, so am I.
Yet for seventeen years I have lived alongside autism, and I still don’t know what to say. The answer rarely fits neatly into the palm of the asker’s hand.
But bit by bit, I try to add color to the black and white diagnosis typed on a page.
He’s tall. He wears glasses. He prefers pop music to rock. I’ve never seen him drink a glass of orange juice.
He likes his meals on time, and going to the movies, and listening to music.
He’s not overly sensitive to clothing, but he is very sensitive to scent.
In other words, his olfactory system—the human wiring responsible for the sense of smell—is often in overdrive. This makes events like holiday parties, barbecues, and unfamiliar restaurants a little tricky.
For the longest time, he had to touch his food before he ate it—even things like meatballs and ice cream. This drove me nuts. It’s better now.
He didn’t speak until he was three. Sentences came close to five. In first grade he had a phase of what’s called echolalia, where he repeated whatever was said to him.
Now, he scripts. He steals phrases from music, television, conversation, and echoes it back verbatim.
In some ways, we are trapped in a back-and-forth type of communication. Like two court reporters, we exchange information about the weather, prescriptions, traffic, recipes.
I want to talk to my son.
On one hand, you might say I know everything about him.
I know he likes dinner by 6:30 and his favorite color is blue and he prefers a certain kind of wipe for his glasses.
Yet I long for more.
What does he dream about?
Hoe does he remember everyone’s birthday?
What is it like to be him?
Having a son like Jack is like wearing a clock on my back.
It is like watching a precious flower seek water and light, sleepovers and birthday parties.
I guess you could say it’s like climbing a staircase. We jump up a few steps at once, only to stumble backwards. Most days I wish for an elevator.
I live alongside autism. This means I am privy to what most are not; the wistfulness and the longing in my boy’s quiet heart.
In May, Jack will graduate from high school, and all his services end. Right now, we are perched upon the precipice of the next season.
I am determined to find a place for him to grow and blossom.
My husband is not sure he’s ready.
Night after night, we talk about it. He worries about Jack’s naivete and his vulnerable spirit and whether he’ll be safe.
I worry that keeping him here, in his childhood bedroom, with his childhood routines, will stunt him.
Inside is the smallest voice that tells me to keep going. It whispers that I have to find a way to take another step up the longest staircase I’ve ever climbed. I cannot give up on this.
I just wish someone would tell me I am doing the right thing.
Am I doing the right thing?
I may never know.
Seventeen years, and I still feel like I am making a mess.
This is life alongside autism.
I try again.
The trying is the hardest part. It requires the very most of me.
And yet I know, all over the country and the world, there are mothers and fathers just like us—struggling to make sense of our complicated children and their place int he world.
Our hearts ache.
These kids of our, they are a sky without a ceiling, a sunrise through the window, a child outside of the box.
He is everything I am scared to be—unyieldingly honest and worried and sometimes, alone.
He is the truest person I have ever known. And for all the things he does not say, still his voice is strong.
Mom. Last night I smelled yellow lemon. In my dream.”