What Does Autism Look Like?
I keep a small green box on my desk, and inside are all the letter tiles from an old game of Scrabble.
When I sit at my laptop to write, and the words won’t come, I remind myself that inside this box is every sonnet, play, song, and story ever written.
Romeo and Juliet.
Little Red Riding Hood.
Baby Got Back.
I tell myself my words are somewhere in there, too.
Once in a while, I get invited to a school to talk with kids about creative writing. This is always fun for me, mostly because I know next to nothing about how to teach anything. Also, because I generally like kids as long as I don’t have to cook them dinner or fold their clothes.
I usually sit in a big chair or stand in front of their desks and they look up at me with their earnest eyes and wait for me to say something important about writing—another subject I know next to nothing about a lot of the time.
I actually don’t even talk about writing that much.
Instead, I tell them to read everything. Read novels and non-fiction and memoirs. Read advertisements and magazines. Read about the girl in a red dress on her way to her grandmother’s house, running for her life from long, sharp teeth. I tell them you cannot write if you do not read.
I explain that writing is simply taking your story, and making it everyone’s story. People want to see bits and pieces of themselves in your life.
Then I get all practical and say that if you want to write, then write. Sit your butt in the chair and start. Then do it every single day for the rest of your life. It’s just that simple, and it’s just that hard.
I show them my green box and tell them anything they want to say is in there. Sometimes I shake it so the tiles rattle.
And then I settle in, and open my book, and I read blogs or chapters or essays I’ve written. I mean, it’s basically a captive audience and they have to be polite and clap and stuff. Otherwise the teacher will get mad.
I read about my own kids, and our family, and my son Jack who has autism.
One time there was a girl—she was maybe eight or nine—who stood up and asked me what Jack looks like.
I told her he is tall, and he wears glasses, and he prefers a blue turtleneck in the winter. But sometimes he likes this one gray sweater we found on clearance.
I told her he jumps around the room a lot because it makes his body calm, and he rubs his hands together like he’s trying to warm them up on a cold day.
I didn’t tell her how, when he was younger, he used to be able to fly under the radar at say, a restaurant or a movie theater. But now, people see the way he moves. They notice the way one pant leg is tucked into his sock and how he doesn’t bother to fix it. They ask, in careful tones, where he would be most comfortable.
I love words. I always have.
I love how the word this implies intimacy, while that suggests a distance.
Can you hand me this salt shaker?
Can you hand me that salt shaker?
And yet, there are a bunch of words I wish I never had to learn.
The Medicaid thing is hard for me. Maybe it’s even harder than autism. I can’t say for sure.
What I can say is the idea of putting my son on public assistance breaks my heart. It makes me feel like a very crummy person.
Everyone likes to say it’s not for me. It’s for him. We pay taxes and there are services he will need and Medicaid will cover all of that when he turns eighteen.
Did you know a feeling or emotion is something that can usually be summed up in one word?
Sad. Angry. Confused. Heartbroken.
I don’t think you can sum up the feeling of plunking down a Medicaid card at the doctor’s office for your 14-year old son who has autism. Not in one word, anyway. Instead, I try to focus on the basics.
Who. What. Where. When. Why.
Children’s Hospital, Buffalo, New York.
November 3, 2006.
I don’t know why.
I don’t know why, but it was a cold, gray day and the doctor observed my 18-month old spin and whirl around the tiny exam room and then we both watched as Jack slammed his shin on a metal filing cabinet and collapsed, screaming, to the floor.
And then the doctor asked very quietly if he—my son, Jack—ever came to me when he needed help, or when he was hurt.
And I looked at Jack and I looked at the doctor and I answered, no. No, he never did.
Little girl, can you see this?
Can you see the doctor in his white button-down shirt with the sleeves rolled up?
Can you see my son rolling on the floor and crying as if he was completely, utterly alone in the world?
Can you see my heart crack open wide?
This is what autism looks like.
I don’t know why.
I don’t know why I have to put him on Medicaid and send him to a different school in another town and consider the way certain medications may interact with one another inside his restless body.
I mean, why any of it?
I guess it could be any number of reasons. Wonky genetics, twisted DNA, fate, God’s plan, pay back for all the times I gossiped, or karma for the time I was fourteen and I took a lip gloss from a CVS to see if I could get away with it.
He only knows how to match the highest regulatory system in the room. Isn’t that fascinating? This means I have to work like the devil to keep my voice even, and my emotions calm.
He thinks in color.
When you say I’ll see you next Tuesday, he imagines a sky bursting in orange.
I make his bed every morning. I pull the sheets up tight and arrange all of his pillows. Sometimes, I have to strip everything off and remake it altogether, because he tosses and turns so much in his sleep that the blankets are a mess.
At fourteen, he’s perfectly capable of doing it himself, but I do it anyway. I do it because I’ll never know what it means to him—if it means anything at all.
This is what autism looks like.
What does Jack look like, you ask?
Well, he looks like a boy—a boy who eats cookies and watches movies and drinks soda and bakes cakes.
He loves campfires.
He is afraid of the wind.
It might break me. I am praying for strength, but one day, it just might break me.
I believe in him.
I believe in us.
He looks like a boy who is trying.
Only there is a wolf at the door.
January 14, 2019 @ 2:34 pm
Is Jack’s IEP team incorporating transition plans into the IEP yet, and does Jack attend his IEP meetings? I recently read that it really helps the child learn self-advocacy skills when they learn which accomodations and modifications they are receiving. Another blogger made it clear to me that a lot of children with an IEP don’t realize that there is all this behind-the-scene stuff going on. As a result, we inadvertently hinder their ability to make these arrangements for themselves in the future.
A good transition plan usually starts at age 14 and may involve future opportunities such as interships with a job coach while still in high school.
I am bringing this up because I was wondering what you meant with the “wolf at the door.” I am thinking that it perhaps referred to one’s worry about the future and the child’s transition into adulthood, but I may be mistaken.
January 15, 2019 @ 12:38 am
You are such a beautiful soul. Jack is so blessed to have you as his perfectly imperfect mom! You are amazing!
January 15, 2019 @ 11:10 am
Always so good! Posted an executive my IG and will continue to sing your praises. Btw, did CVS catch you with the lip gloss?