I had a teacher who used to say there are two sides to everything, even a piece of paper.
For most of my life, I believed him. I pictured arguments and negotiations as a lightweight sheet of paper floating down on a table, and I always tried to consider each side.
But then I met you. Rather, I had you. And when you started to talk, I realized there are more than two sides to you, or for you. There’s your side, there’s the world’s side, and then there’s autism.
In some ways, autism sort of stands between you and the world. It’s like this small, invisible shield. No, not a shield exactly. It’s more like a two-way mirror at a carnival—the kind that distorts your face when you look through it.
Your view of the world is blurred by loud noises like sirens, and you have to squint into bright, exploding fireworks and a flash of confusing faces and expressions and voices to see us.
In order to see you, the world has to peer around tantrums, ceaseless chatter about Cinderella and toilets and Frankie Valli, and unfortunately, a certain level of rudeness.
People say you have the gift of saying what’s on everyone’s mind, and they often say they love your unfiltered look at life. They wish they had it. That is, until you turn your unrestrained gaze in their direction and let loose.
Then, not so much.
Remember your birthday party last month? Of course you do. For weeks and weeks you planned every detail—the menu of Oreos and cake and s’mores and pizza, the music, the activities, the guests.
A few days before the party, you woke me up before 6:00. “One boy said he is. For on a diet. At the party we need more healthy choices to eat.”
I was at once touched and irritated—it was 6:00 in the morning, after all—but I got up and helped you revise your long, handwritten list to include vegetables and dip and fruit salad and yogurt.
Halfway through the party, everyone was sitting together on the front porch and you stood up suddenly. You pointed your finger at this boy and said, “REMEMBER. You are on a DIET. That is why we have CARROTS.”
Oh, Jack. My heart broke into a lot of pieces for all three sides in that moment; for him, for you, for autism.
See, unfortunately, one comment—a single loud remark—unravels all the early morning worry and the kindness and the mini carrots with low-calorie ranch dressing. Your sweet intentions are lost, cloaked in rudeness like a tender turtle crouched tentatively inside a hard, rigid shell.
I once read a great article in a paper called the New York Times about adults with autism in the workforce and their unexpected social challenges. They gave an example of an office where every Friday, employees took turns baking a cake for everyone to share. You would love to work in that office, I know.
There was a man in the office with autism, and he never thought to bring in his own cake, even though he enjoyed eating everyone else’s on Fridays. Even worse, if he didn’t like the cake someone brought, he would announce that it tasted terrible.
I will admit it, I giggled a little to myself. I could picture you licking the frosting off your fork and announcing that the cake was too dry or too chocolate or too salty.
But somewhere deep inside, I cringed. I don’t want you to be that person. I don’t want everyone to raise their eyebrows and shrug their shoulders and smile drily, “What can you do? That’s just Jack.”
And yet, just like a piece of paper, there is another side to your autism.
Last weekend we had a few families over for a barbecue. One of the families has a four-year old boy, Sebastian, who is in a wheelchair. Before everyone arrived, we explained this to your brothers and sister so everyone would be prepared.
When they arrived, Sebastian’s parents unbuckled him from his car seat and unloaded his wheelchair while we all sort of hung around in a weird semi-circle. We shuffled our feet uncertainly and talked awkwardly about the beautiful weather. Then all at once, you stepped forward. You had a plan.
Confidently, you walked over to Sebastian and grasped his wheelchair’s black handles. “Come on. We need to bring him through the front doors. They are for the widest.”
And off you went, wheeling your newest friend down the sidewalk as though it was something you’d done every day of your life.
“Dad,” you called out over your shoulder. “To help me. Get this up the steps.”
In the space of three minutes, you stripped away all the outside layers of awkwardness and perception and gracelessness. A little dark-haired boy in a wheelchair needed to get inside the house, and you knew just how to get him there.
I know deep down, you have kindness in your heart. I know your abruptness—your bossiness—comes from a profound need to control your environment, your schedule, your food, your music.
I know you get frustrated when people ask you questions because it’s hard for you to find the right words. You need more time.
You understand rules—like brushing your teeth before bed and kneeling in church and doing your homework in pencil—but the complicated subtleties of social interactions elude you. But I know you can learn them, the same way you learned how to load the dishwasher and spread peanut butter on a slice of bread.
Because Jack, when someone hears or reads or thinks about autism spectrum disorder, I don’t want them to think about giant tantrums and huge meltdowns and rudeness.
I want them to think of progress and hope and memory and kindness.
I want them to think of fruit salad with grapes carefully sliced in half and bright orange carrots on a tray.
I want them to think of an 11-year old boy stepping confidently up to the handles of a wheelchair, and steering a little boy inside.
See, you are more than just a piece of paper. You are more than a diagnosis typed in black letters on a white form, but the only way the world will see this is if we make the mirror a little more transparent.
This will be hard work for you, I know, but autism is not your excuse. You cannot hide behind the blurry glass forever.
For too long, I’ve offered you banal platitudes—be good, be kind, be respectful—but I realize now that your literal mind wasn’t ready. In fact, it may never be ready.
Instead, I want to untangle the complicated knot of social interaction for you, one colorful string at a time. I’ve put together this little handbook—a manual—for you to refer to whenever you’re unsure what to do.
When you are searching for an answer to a question, take your time. Do not get frustrated.
I will wait for you. I will make sure other people wait for you.
Smile when someone gives you a present. Even if you have it already or you don’t like it or need it–just smile and say thank you.
Never ask if someone is pregnant, or on a diet, or getting divorced.
Always ask if someone needs help.
Hold the door for the person behind you in the grocery store or the library or the mall.
Don’t eat salsa off of your chip and then dip it back into the bowl again.
Whisper in the library.
Whisper in the movies.
Whisper in the morning.
Please, when it’s your turn to bake the cake, bake the cake.
Before you say something doesn’t taste good or look nice or sound pretty, take a breath and remember that is autism’s voice trying to talk. Use your voice instead.
Be good, be kind, be respectful, but most importantly, be yourself.