I’m not sure if you remember me. We saw each other yesterday.
You kept twisting around to look at us, even after the movie started. I liked your sweatshirt. My daughter used to love dinosaurs when she was your age, too. She wore a pink hat with one on it almost every day in first grade.
Your mom seemed a little nervous because you were turning around, but I didn’t mind one bit.
I know you were looking at my son, Jack.
He was rubbing his hands together very quickly, and grunting a little in the back of his throat. Every few minutes he bent over double in his seat.
He does this all the time. In fact, he does it so much that I don’t even notice it anymore.
He does a lot of things that are a little unusual.
He talks to himself.
He rubs his eyes and the side of his nose.
He asks the same question over and over again.
This is all because he has autism.
Autism is no big deal.
I mean, sometimes it’s a big deal and other times it’s no big deal, and before I know it, it’s a big deal again.
Anyway, Jack has autism. He was born with it. When he was in my tummy and he was busy growing fingers and toes and hair and kneecaps, he was also busy growing autism in his brain.
So, what exactly is autism?
Well, it’s kind of hard to describe.
It’s not something you can catch from another person.
It’s not something you can cure, either, like a bad cold or poison ivy.
Science says it is a developmental disorder of variable severity that is characterized by difficulty in social interaction and communication and by restricted or repetitive patterns of thought and behavior.
I know, these are very big words. They make my head hurt. I don’t think about them much. I’d rather think about my son.
He will be fifteen in May.
He is taller than his dad.
He doesn’t have any friends. Not a single one. People confuse him. He doesn’t know how to be around kids his own age, so he starts to ask a lot of questions that don’t make sense.
For example, maybe you are standing with a group of your buddies in a circle and you are talking about Pokemon cards. Jack doesn’t like Pokemon cards. He never has. So he’ll just bust right on into your conversation and start talking about the newest live-action Dumbo movie. He will go on and on about it, even if no one else seems interested.
If you ask him a question he might take a little while to answer you, because words do not come easily for him.
Sure, the words are in his brain. But they fly around like colorful butterflies and he has a hard time making them be still.
He has almost no working memory.
Imagine working memory as a big, smooth table inside of your brain, where you keep stuff in little piles that you want to remember for later, like a phone number, or part of a recipe, or the beginning of a math problem.
He can remember the phone number okay, but by the time he gets to the phone and has to think about pushing the buttons, he forgets it. Then he has to start all over again.
He lives in what we call fight or flight. This is because he is very, very anxious. He is afraid of many things, and like a bird perched on the edge of a branch, he is always ready to fly off into the sky.
The thing is, not everyone who has autism has it the exact same way.
Picture a great big hill that starts out a little bit flat and then gets kind of tall in the middle before it flattens out again. This is called a bell curve.
People who have autism all land on the bell curve in a different spot—some are in the flat area, some are in the tall, hilly part, and others are in the middle.
I don’t know where Jack is on the bell curve, to be honest. I never thought about it before now.
I love him.
When he was little, he used to have what we call meltdowns. A lot of people mistook them for tantrums.
The difference between a meltdown and a tantrum is this: a meltdown is a reaction, where a tantrum is an attempt to change an outcome.
For example, maybe you got really mad in the store because your mom wouldn’t buy you some gum. You wanted the gum very badly, and you got so angry that you started to scream. You thought the screaming would change her mind, and she would reach over into the wire rack and pick out the gum and give it to the cashier.
This is a tantrum.
Maybe one day you went into the same store but the lights felt as bright as the sun—like they were burning your eyes out of your face. The music was loud and crazy and made your ears hurt.
Everyone was talking too fast and too busy. You could not keep up with all the words and this made you feel nervous and afraid.
The lights and the colors and the song began to swirl like big messy blobs of paint around you. You started to scream and flap your hands and hit your own head, because you could not take one more second of the burning and the music and the talking.
This is a meltdown.
Jack doesn’t have many meltdowns anymore. He has learned how to handle lights like the sun and the music and the loud talking.
I am proud of him.
I am proud of how far he’s come.
I am proud of the boy he is, and the person he wants to be, and the way he tries so hard at things that come easily for the rest of us.
I am proud of where he will go, wherever that is.
Why am I telling you all of this? About the autism and the butterflies and the phone numbers?
That’s simple. I am telling you so you’ll know.
You’ll know a little more about a boy named Jack and what his life is like and why he moves the way he does.
I hope if I tell you, maybe autism will be no big deal for you.
And if you are standing with your group of friends and someone barges right in and starts talking too loudly about a Disney movie, you’ll nod your head and smile instead of turning away.
Mostly, I hope if you ever see someone who cannot bear the glare of the sun, you will take them by the hand, and lead them to shade.
You’ll never meet another person like him in your life.
I think he’s in the middle part of the bell curve. The part where birds fly high and the lights are soft and the music is sweet.