Autism’s Fingerprints
My name is Carrie, and I have five kids.
My second son has autism. His name is Jack. He is sixteen.
Autism impacts the way he eats, sleeps, learns, and moves.
Let me tell you what else autism does.
It takes a perfectly ordinary activity, and smudges it with its greasy fingerprints. It turns up the volume, and makes everything so bright and glaring, you have to squint to see any of the goodness that might be left.
There is no manual for this—for figuring out how to clear through the smudges and figure out the truth, if that makes sense.
Take, for example, the time Jack applied for a job.
Good, right?
Very good.
He downloaded the application and—after asking if he was a US citizen and erasing his first answer and starting again—he filled it out at the kitchen counter.
Good right?
They hired him.
Very good.
Every Tuesday afternoon, he washes dishes from 4:30 – 6:30.
Yet autism couldn’t let us revel in this milestone. We couldn’t quite celebrate fully.
Because every single Tuesday afternoon, Jack starts pacing the house around 3:00.
He asks over and over again when we’ll leave. He rubs his hands together and picks his cuticles and wipes his glasses clean.
He is terrified he’ll be late and he’ll get fired or in big trouble and maybe they won’t let him choose a soda at the end of his shift.
(Distance between Cariello residence and Jack’s place of employment: 1.8 miles.)
Then came the playlists.
Jack loves music. He especially loves cataloguing and organizing songs into long, complicated playlists.
He decided he had to make one for work—something he could play for everyone each week over the speakers.
Good, right?
Except not so good, because autism and the fingerprints clouded any possible joy here.
It consumed him. He was obsessed. He perseverated and pestered people about their favorite songs. He wrung his hands together and worried that maybe the order was wrong, or they wouldn’t have the chance to listen to it.
After the playlists came the texts.
Jack does not have his own phone, but he does share one with his siblings.
He asked if he could use it to join the group text at work. We agreed. For a while, it was good.
He remembered birthdays.
He asked about favorite Oreo flavors.
He shared bits and pieces of his day.
Then autism got its sticky little fingers on the whole thing and made a mess of it.
The problem is, Jack doesn’t understand the nuances of group threads. He over-texts. He doesn’t know when to stop.
And of course everyone at work is gracious about it. They meet him where he is and give him space to be himself.
But it may not always be this way. He may not always be surrounded by people who do this. So I have to find a way to teach him when it’s too much and when it’s enough and what that boundary looks like.
There is no manual for this.
As usual, autism—with its funhouse mirror quality—took his earnestness, and his longing to celebrate, and distorted it into something else entirely.
The truth is, he’s lonely. My son is lonely.
Time and time again, this boy of mine taps into the darkest part of myself, and insists I fight my way out again.
I wish I could take a bottle of Windex and wipe the fingerprints away. I wish I could wipe the pain away.
There is no manual.
There are no shortcuts.
“Jack, buddy, we need to talk about your texts.”
“For today. Is Zack’s birthday. I hope he got a nice present.”
I love him with the fiercest heart.
Written by, Carrie Cariello
Carrie Cariello is the author of What Color Is Monday, How Autism Changed One Family for the Better, and Someone I’m With Has Autism. She lives in Southern New Hampshire with her husband, Joe, and their five children. Carrie is a contributor to the Huffington Post, TODAY Parents, the TODAY Show, Parents.com. She has been interviewed by NBC Nightly News, and also has a TEDx talk.
She speaks regularly about autism, marriage, and motherhood, and writes a weekly blog at www.carriecariello.com. One of her essays, “I Know What Causes Autism,” was featured as one of the Huffington Post’s best of 2015, and her piece, “I Know Why He Has Autism,” was named one of the top blog posts of 2017 by the TODAY Show.
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