Don't Forget About 'Our' Autism
There’s a child at this event as cute as a Baby Gap model, with thick tufts of brown hair sticking out from under his baseball hat.
“I’m Charlie,” he says, sticking out his hand. “I’m 4.”
I smile at him, reaching out my hand to meet his. But before we can shake, he runs off to chase the other children.
“I’m sorry,” his mother says. “He has autism and gets easily distracted.”
She shrugs sort of helplessly, as if to say, “Hey, what can you do?”
I nod my head. Autism. I do understand, I think about telling her then. Because, of course, at this event for children with autism, my child, too, has autism. It doesn’t take her long to realize this, because as we speak my son is making his way through the room, flapping his hands over his head and rocking his whole body in our direction. His mouth is bulging on one side, filled with some raisins he found in the car on the way over. He keeps them buried in his cheek like a chipmunk.
“Dominic!” I call out to him and he bobs his head, bouncing in my direction. “Dominic,” I say quietly, steering him toward the other mother. “Say hello.”
“Hello,” he says, his eyes unmoved.
“Tell her your name. What is your name?”
“Dominic,” he answers. This is a big chunk of his verbal ability, answering these questions. He is working hard. And because the light and the noise and the newness of this room are colliding in a wild cacophonous swirl in his frontal lobe, he wrenches his mouth up in distress. He cries a little, puts his hand over his ears. He will stand and wait; he knows what is expected of him. But it hurts him, the colors and noise of this place. He is deep within himself.
This is my son. He has autism, too.
She looks at us strangely, not unkindly. She isn’t sure what to do. In fact, everyone — all the other parents, the volunteers — they do not know what to do with my son with autism. He is the “strange” one here, even though in his small classroom at school he is at times the “highest functioning” one. Even this mother, who has also battled with the diagnosis process, with stigma, with “normal,” does not understand “our” autism. Because this is not the autism that is here, at this event for children with autism, nor most places these days. Here, the children speak in sentences and follow commands. Begrudgingly, yes. With difficulty, some. But none of them are on the island of disconnect.
“Our” autism is not the autism everyone knows.
My boy, with his “classic autism,” the kind that used to be the only face of autism half a century ago, is the one who does not belong now. We do not have a home in the “real” world, where children easily smile and make friends and answer questions. And we do not often have a home in the community of autism, where the children are almost always higher functioning. Where the children can speak or kiss or hug. Where the children are not quite “normal,” but not recognized as wholly “abnormal.”
Now, autism is the quirky kid in the classroom who interrupts a lesson with his incessant talk about world capitals. Autism is the girl who can’t understand the gum-snapping sarcasm of her peers. Autism is Rain Man, with his barely-but-functional speech and misunderstanding of nuances, his bright and amazing understanding of facts, dates and places.
Autism is them. We are all the same, and not the same. And they are no way less “disabled” because they are “higher functioning.”
But it is more than them.
It is the adults with severe disabilities who watch “Wheel of Fortune” religiously in their living rooms at night. The ones who have never had a job and who live with aging parents who wring their hands with worry, wondering, who will help him dress when I am dead and gone?
It is the 14-year-old boy, who in anger, fear and unspoken loneliness, wanders at night, slips out the door — his parents, sick and unsleeping, phoning police, searching for his shadow in their car headlights. Come home, come back to us.
And it is my own boy, unable to answer basic questions. How was your day, Dominic? How old are you? Do you feel sick? My own boy who has the route to his school memorized, down to every stop light and lane change. My boy who can use his mind’s eye to photograph the make and model of the elevator at the museum from just one trip, just one floor, going down and then come home and type it into his iPad with perfect spelling. Schindler Elevator. Floor Eight. Seven. Six. Five.
YouTube videos for days, I watch him watching on his iPad with pure excitement in his eyes, his arms flapping in anticipation of the doors on the elevator opening. He is joy right now. This is autism, too.
My own boy, who has never said “mom” with authenticity, who might not date girls or drive cars and who struggles with tying his shoes at 11 years old. His mother, who wrings her own hands in worry. Who will help him when I am dead and gone?
That is autism, too.
We are autism, too.
Embrace awareness. Figure out the Why, the How and lead us back to the I Don’t Know. We are not sorry for ourselves, we accept what we can not change and work hard for what we can.
But please, do not forget us. The adults, the ones with severe disabilities. The non-quirky kids, the wholly impaired. Do not push us out or make us redundant.
Our face of autism might not seem as perfect to some. But we are community too, and we want to be there with you.
Maybe our voices aren’t as loud, because maybe we can’t speak at all. Maybe we are hard to see. Maybe we are not in the classroom, maybe we are in a different school altogether, maybe we are not on television. Maybe we are outside, flapping our arms like wings, looking up in the dark with seeing eyes, at the lights of planes in the nighttime sky.
But we are still here. We are autism, too.
Don’t forget to remember us.
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