When you were about three years old, a woman suggested to me gently that I shouldn’t talk about your autism.
“Maybe it should be, you know,” she leaned in so close I could smell the spearmint gum she was chewing. “A secret.”
I almost laughed out loud. A secret! Which part of you and your autism was I supposed to keep a secret? The part where you didn’t even look up if someone talked to you?
Or how you insisted on carrying a flashlight around with you wherever we went?
Maybe the year or so when you did something called echolalia, and you mimicked every single thing I said at least eight times.
Jack put your coat on Jack put your coat on coat on coat on on on on.
How would I go about hiding it? I supposed I could have told people I had a teeny-tiny parrot in my pocket, but that seemed kind of weird.
Or that you spoke a foreign language and you didn’t understand the woman in the post office who said, “Hello Jack! How are you today?”
So I told them the truth. I said I didn’t know.
I don’t know why he repeats everything I say forty-nine thousand times.
I don’t know why he goes crazy if we tell him to put the flashlight away.
I don’t know why he won’t answer you.
Then the doctor told us your big huge official autism diagnosis and it was stamped all over a million forms, and so once again I said the truth.
He has autism. That’s why he says things over and over.
He feels comfortable when he holds certain objects.
Just keep talking, he can hear you even if he doesn’t say anything.
I can’t think of any other diagnosis that is shrouded in secrecy the way autism is. They all live and breathe out in the open like sunbathers on a warm, sandy beach.
Yet people want autism to wear some sort of fancy cover-up and stay out of the sun. For whatever reason, they are scared of it, in a way they aren’t scared of wheelchairs or hearing aids or extra chromosomes.
It’s is clouded in a murky swirl of stigma and shame and fear, and at the center of it all, pulsing like a raging heart, is blame.
The thing is, even if I tried to keep your autism a secret, people would label you anyway. People like the librarian and the kids at school and the cashier at TCBY who saw you dump the entire container of rainbow sprinkles into your huge cup of frozen yogurt.
Honestly? I’ll take autism spectrum disorder over that bunch of words any day.
In fact, when I mouth autism over your head, I can almost see the words changing—rearranging, like letters in a big hot bowl of alphabet soup.
The first few times I told people about your autism wasn’t easy, Jack. I felt vulnerable, like I had forgotten to put any clothes on and I was walking around naked, or as though I had been trying to make a beautiful, shiny bowl out of clay, but the best I could do was a misshapen mug with a cracked handle.
Although we are having one of the warmest winters on record here in New Hampshire, it is still snowing inside our house. For almost two months now, I have been trying to find you in the middle of autism’s cold, harsh blizzard.
You don’t sleep. You are nasty and mean and angry and remote and far, far away. Your body is in a constant state of deregulation and you bit your fingernails down to the quick.
You are scaring me.
Last Thursday afternoon, the school called. I could hear you screaming in the background, but I could barely concentrate because your crying was all mixed up with hot alphabet soup sentences like he’s very upset and throwing things and not safe to ride the bus.
For the second time in a month, I raced out the door to pick you up.
When I got there, you were huddled in the corner of the empty classroom, sobbing big huge empty gulps of air. Your cheeks were as red as if you’d spent the day outside.
The alphabet soup letters shifted and swirled and spun into place.
I walked slowly toward you, as if you were a rare delicate bird who would fly off into the clouds if I moved too fast. When I reached you, you stood up. I folded you in my mother-wings, careful, so careful, not to wrap too tight.
You laid your head on my shoulder and we swayed together lightly like leaves in the soft breeze. You wept, and I wept, too. I wept because of you and for you and with you.
“Take me. Home.”
I’ve had a lot of low moments when it comes to autism, but this one, Jack-a-boo, was the lowest.
Walking into school and seeing people bustling around with walkie-talkies in their hands and saying things like we had to clear the room to keep everyone safe and thinking the bright white hot thought in my brain that they were talking about you—they had to keep everyone safe from you; my gentle giant, my cake-baker, my turtleneck-wearer, my son.
All the way home you screamed you were never, ever going back. As soon as we pulled into the garage you jumped out of the car, but I stayed behind and pretended to read something on my phone.
Really, I was just crying stupid tears and I didn’t want you to see because I hate to have anyone see me cry.
When I walked inside I tried to talk to you, balancing along the familiar tightrope of cause and effect, heartbreak and discipline. You sat at the counter and chewed on your fingernails. You wouldn’t look at me.
“Jack. Honey—please, stop chewing on your nails, they’re going to bleed again—I want to help you. But we can’t throw things at people.”
“Jack, look at me. Tell me what’s wrong, why you got so upset.”
“Jack, I’m sorry you’re sad, but you will have to write a letter to your teacher and say you are sorry.”
Finally, you looked up and the quickly away from me.
“I hate. It all.”
“Jack, tell me. Tell me what happened.”
“I’m going to. For vandalize the school.”
“Why? What made you so mad?”
“I will. Throw all the books. For down the hall.”
I tried a different tactic; trading actions for feelings.
“Don’t tell me what you’re going to do. Tell me how you feel.”
“I’m going to put it on fire.”
“Don’t tell me what you’re going to do, Jack. Tell me how you feel.”
After five minutes we were screaming at each other, big ugly loud voices that carried through the house and bounced off the walls.
“I will crush. Every COMPUTER.”
“How do you feel right now?”
“I will be rude to all of them.”
“DON’T TELL ME THAT. TELL ME HOW YOU FEEL.”
And your face just crumpled inside of itself. I can’t explain it any other way.
“I don’t know I don’t know how to feel I don’t know what I feel.”
I thought about all the times I said I did not know; when you were a little chubby three-year old and you repeated yourself constantly and when you needed to sleep with that stupid flashlight and when you wouldn’t even raise your head if I called your name.
Jack! Where are you Jack?
I thought about how, strung together, these three words are the strongest and the most powerful anyone has ever said.
I don’t know.
They are purpose and surrender.
The are forgiveness and mercy.
They are the beginning.
See Jack, the label autism spectrum disorder does not give us answers. It is merely the starting point, the place where we gather up the pieces of the broken mug, and glue the handle back together again.
In the meantime I want to tell you all the alphabet-soup words I did not say as we stood, swaying and weeping together in your classroom.
Hold on to me. Hold on to yourself, for just a little while longer.
Spring is coming.