Lately I’ve been reading a lot of blog posts about things you shouldn’t ask people; the top ten things you should never ask a new mother and questions no special-needs parent wants to hear and the worst things to ask about autism.
But I want to tell you something. You can ask me anything.
If Jack was some sort of prodigy—which he is not; he does not play the piano with a flourish or contemplate chess matches or solve long, complicated algorithms—but if he was, people would flock to me and ask all sorts of questions about how long he practices, where we go for tutoring, how many tournaments he’s won.
Why should autism be any different?
Every year we have a party on Halloween. Well, not exactly a party, but more of an open house for all of our neighbors, with pizza and snacks before all the kids rush out into the dusky twilight to trick-or-treat. We started it when we first moved here about seven years ago, ostensibly so we could get to know the people who lived on our street.
But I have to admit, we really started it for Jack.
We started it so other kids in the neighborhood could meet him in the place where he’s most comfortable; his home.
I wanted them to see his wall of license plates and taste the chocolate frosted brownies he arranged and re-arranged and arranged again on a pumpkin-shaped platter. I wanted them to become a little more familiar with his robotic, Arnold-Schwarzenegger voice.
Then even if they don’t really know what autism is, hopefully they’ll know Jack a little better. They’ll know that he doesn’t really like playdates, but he loves Halloween. They’ll know he doesn’t always meet their eyes, but that doesn’t mean he isn’t listening.
And maybe they won’t point or jeer or whisper as much when he stims down the center aisle of the bus, flapping and grunting and jumping before settling into his solitary seat. Maybe one of them will wander over during recess for a quick hello before they race back to their huddle of friends.
Over the years, I’ve learned that if I want to make Jack comfortable outside, I’m going to have to let people inside.
Jack wants to be Maleficent for Halloween this year. You know, the wicked villain played by Angelina Jolie? With the big black wings and bright red lipstick? Yeah, her. My son wants to dress up as the evil queen from the story of Sleeping Beauty, and I have absolutely no idea what to do about it.
He’s different enough already, you know? I mean, he’s ten and his favorite thing in the world is to make long, illegible lists and go grocery shopping with me on Saturday afternoons. He skips down the aisles comparing brands and muttering about protein. When we get home, he organizes the snack pantry.
He can be hard to understand. It’s not a pronunciation issue, as much as his sentence structure is usually a little bizarre; “Pizza for me is tastes good.”
Lately, throughout the day, he puts the two middle fingers of his left hand in his mouth and, with his other hand curled into a fist, bangs on his right hip while he bends over rapidly at the waist six, seven, sometimes eight times.
All of this is the norm of my day, the steady tympani of my background noise. But it doesn’t exactly help him connect with his peer group.
Add to that a fifth-grade boy waltzing around the neighborhood in tall black boots and a wig fashioned into horns? Well even a Halloween party isn’t going to stop those whispers.
But on the other hand, odd is good, right? We collectively cry “To each his own!” on Facebook and Twitter and Instagram. We celebrate uniqueness because no one wants to be cookie-cutter; no one wants to be exactly like another.
But this is not social media or a picture someone photo-shopped and posted online in soft shades of sepia. This is not a game.
I mean, I never thought autism was a game. But there are days when I feel like we are little more than pawns on a chess board. I try and get Jack to work on flash cards, and all the while autism’s symptoms leapfrog over one another. Silently, we race to declare checkmate.
And the stakes are so very high.
I need you to see him. I need you to help me bring the pieces on the board to life so I don’t reduce him to a match of gains and losses, forward steps and backward slides. He’s talking he’s talking now he’s stopped sleeping he’s riding the big bus but he always sits alone he decided to wear a costume only he wants to dress up as a woman.
If you ask me, then you will know.
You will know I have no answers and I am usually pretty confused. You will learn I am scared. You will understand our dilemma of gender identity and a boy who would rather grocery shop than jump in a tall pile of leaves on a beautiful Saturday afternoon.
Who knows, maybe I’ll run into you in Hannaford’s or the library or the mall, and maybe you’ll ask me what Jack’s going to be for Halloween. And then I’ll say, “He wants to be Maleficent. You know, from the movie?”
Maybe you’ll say, “I don’t know, that seem like an unusual choice for a 10-year old boy with autism. Aren’t you afraid he’s going to stand out too much and kids will make fun of him?”
If you say this, I will nod my head and agree. Because that’s exactly how I feel about it.
Or maybe you’ll say, “Who cares? Let him be what he wants. There is no such thing as normal anymore. He’s happy, and that’s all that matters.”
And if you say this, I’ll nod my head and agree. Because that’s exactly how I feel about it, too.
But maybe you’ll suggest I ask Jack why he wants to dress up like a female Disney character with big fake nails and feathery black wings.
Maybe you’ll remind me that, although he does not appear to be an expert in chess or a genius at tickling the ivories, he is still a prodigy in his own right.
He is a prodigy of his autism.
So after dinner one night, I will ask him. “Jack, why do you want to be Maleficent for Halloween?”
He will bow his head, almost as if in prayer, and hesitate for a second. But instead of praying, I realize he’s disappearing inside himself; bending closer to hear autism’s soft, compelling whisper, as familiar to him as his own heartbeat.
“Jack,” I call him back to me. “Why. Why Maleficent?”
And in our quiet kitchen, with the lights turned low and the smell of garlic bread hanging heavy in the air, he will say, “Because. I do.”
“But what do you like about her?” I will press.
And in his unusual syntax, he will answer. “Because. She comes bad. And then she is gooder.”
When he says this, I will feel sad and depressed and confused. But I will also feel a little sliver of hope blossom inside of me like the tiniest seed.
For weeks now, Jack’s perfectly described the villainess—the tall black boots and the crimson lips and the tight-fitting dress—but he doesn’t have the words to tell me what he really likes about the character, what he really admires.
And just like that, the tall, cool queen glided into her place on the chessboard. Maybe not a win exactly, but definitely some sort of victory.
Sitting in my kitchen, watching him tap his fist on his hip and bend over at the waist six, seven, eight times, I still didn’t have an answer. I don’t know if we’ll let him dress up as Maleficent or encourage him to choose something else.
But I am glad I asked.