We all know what autism is, right? I mean, honestly. What a boring title.
Autism is a complex neurobehavioral condition that includes impairments in social interaction, developmental language, and communication skills, combined with rigid, repetitive behaviors.
My son Jack has autism. He’s thirteen. He has low muscle tone, limited eye contact, and lots and lots of anxiety. He has impairments in his social interactions and his communication skills are delayed, and he has a ton of rigid, repetitive behaviors.
For the past thirteen years, I have examined autism from every conceivable angle. I have looked behind it, and underneath it, and behind it once again. I have searched for clues in every corner, and used a metaphorical magnifying glass to see it up close.
Jack was diagnosed when he was eighteen months old. He was a chubby toddler in overalls, and he drank from a green sippy cup—not red, or blue, but green. He screamed if anyone tried to change the channel on the television, and he banged his head on the floor. He loved to finger paint.
When I learned my son had autism, I was confused and scared and uncertain. You see, I knew so little about it. Every time a doctor mentioned the spectrum disorder, my brain immediately went to Dustin Hoffman in Rainman. That’s kind of embarrassing to admit, but it’s true.
After about a year of watching Jack bang his head and scream for his green cup, I realized that before I could fully understand what autism was, I needed to figure out what it was not.
It is not something you can hold in the palm of your hand, or taste on your tongue, or smell in the air.
It is not something you can catch, like a cold or the flu.
It is not something you can cure.
From there, I began to sift through autism’s indelible truths, the way a child separates treasure from the sand on a warm beach in the middle of July.
It is headphones during fireworks, and
It’s been called an epidemic, because of the explosion of children diagnosed in recent years.
The first time I read this, I was standing in the kitchen watching Jack pack his lunch. We insist he put his lunch in his backpack for school every day, and as I watched him carefully zip up his bag, I thought to myself, is he an epidemic?
Is he a statistic–little more than black and white data on a computer screen in an office? It seems impossible, but I know it’s true. He is one boy amongst many, as I am a mother amid thousands.
You can’t always see autism, but you sure can hear it. In our house, it sounds like a thousand horses galloping up the stairs, because Jack hops and jumps all day long.
It is countless questions about the same topic over and over, or high-pitched screeching, or the steady drone of music on an IPad.
It is the eerie silence of a child without words.
Autism is a bunch of acronyms strung together like brightly colored lights on a long, crooked wire: ASD, ABA, DSM, PDD-NOS, IEP, OT, PT, PECS.
To some, it is than the sum of dollars and cents—a commercial enterprise of weighted blankets, and expensive therapies, and rent-to-own hyperbaric chambers.
But at the end of the day, it is just autism.
Sometimes I like to say this to myself in a little whisper when I’m starting to get worked up and kind of panicked. You know, like when Jack asks me ten million times if it’s going to rain on Friday, or when I realize he hasn’t made a single friend in school this year.
It is just autism.
When I whisper it, I feel a lightness sweep down the length of my body and into my toes. I feel nearly giddy with weightlessness. I am almost happy. This is my grace—a tender mercy inside autism’s chaotic storm.
I mean, really. He has two working legs and arms that lift and a healthy beating heart.
He doesn’t need chemotherapy, or a kidney transplant, or to inject insulin into his bloodstream.
Autism itself is not life-threatening. He won’t die from it. Obviously, I worry he’ll run behind a car someday to try and see the license plate, but otherwise, God willing, he should live a long life. It might be a life full of Disney movies and The Weather Channel, but hey, if there’s anything I’ve learned from my son, it’s that we don’t all want the same things for ourselves.
After all, what’s the big deal? His brain is just wired a another way. Plenty of people think differently in this round world of ours. He’ll make friends eventually. And if he doesn’t, who cares?
He’ll stop being afraid of the rain eventually. And if he doesn’t, who cares?
He’ll sleep through the night eventually. And if he doesn’t, who cares?
I care. I care a lot.
That’s how autism works. It takes a mother’s heart, cracks it wide open, and fills it with everlasting discord and conflict.
But what exactly is autism, you ask?
Well, there are the trademarks familiar to most people; screaming in the grocery store, downcast eyes, and a long line of Thomas trains arranged neatly in a row.
But I want to tell you that autism is so much more than limited eye contact, and perseveration, and rigidity.
In our house, it is Arnold Schwarzenegger-like speech that is so sweet, and so earnest, your heart will explode the first time you hear it.
It is a mother’s blood and sweat and tears, and a father’s unyielding devotion.
It is aching loneliness and isolation.
It is the difference between a tantrum and a meltdown.
For the longest time, I didn’t know the difference between the two. That’s kind of embarrassing to admit, but there you go.
The difference is this: a tantrum has a purpose, while a meltdown is a reaction.
For example, a 3-year old might throw himself on the floor and scream and cry when he sees those gross machines filled with gumballs in the mall. He does this because he wants you to dig around in your purse for a quarter and buy him one. His behavior has a purpose.
A 3-year old with autism might throw himself on the floor of the mall at the very same time on the very same day because the fluorescent lights are too bright, or the woman next to him is wearing a lot of perfume, or he can the high-pitch ding of a cash register. His behavior is a reaction.
Autism is anything but ordinary, yet hardly unusual.
It is a story with an unknown ending. I mean, I know my other four kids will likely follow life’s customary script: high school, college, job, marriage, children. Sure, there will probably be variations to the narrative, or a different order in the formula. But for the most part, they will make a life for themselves.
With my Jack-a-boo, I simply don’t know. I have no idea if he’ll ever live on his own, or have a job that pays enough money to write a rent check, or if he’ll drive a car.
That’s autism for you. It always keeps you guessing.
The thing is, eventually is a very long word. It has ten letters and five syllables and it can feel like forever stretched out on my tongue.
But it’s not all bad. Autism can be confusing and scary and uncertain, but it is also full of whimsy and light.
It is an unexpected smile, or a surprise joke at dinner. It is progress and hope, redemption and forgiveness.
Autism is a boy. It is my boy. Our son.
I am Jack. I have autism. It is for. Inside of me.