We Are Autism, Too. Don't Forget About Us.

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.
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Nicole Jankowski

There is a child at this event, as cute as any Baby Gap model, thick tufts of brown hair sticking out from under his baseball hat.

“I’m Charlie. I’m 4, ” he says to me and sticks his hand out.

I smile at him and reach my hand out too, but before he can shake my hand, he runs off to chase the other children.

“I’m sorry,” his mother apologizes. “He has autism. He gets distracted easily.” She shrugs sort of helplessly, as if to say, hey, what can you do?

I nod my head, sympathetically, in understanding. Autism. Yes, I do understand, I think about telling her then. Because, of course, at this event for children with autism, my child, too, has autism. But it doesn’t take her long before she realizes this, as my son makes 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 me. This is a big chunk of his verbal ability, answering questions like these. 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, clamping his hand over his ears. But he will stand and wait, he knows what is expected of him. It hurts him, though, the colors and noise of this place. He is gone, deep within himself.

This is my son ― he has autism too.

Charlie’s mother 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 the highest functioning in the room at times—one of the smartest. Even this mother, who herself has battled with diagnosis, 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 stranded whole on the island of disconnect.

“Our” autism is not the autism that people know. “Our” autism surprises everyone.

And that is a terrible thing.

“Even this mother, who herself has battled with diagnosis, with stigma, with 'normal,' does not understand 'our' autism.”

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 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. Where the children are not quite normal, but not immediately 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 is almost the same, but not quite the same—who can not understand the gum-snapping sarcasm of the other 7th grade girls, who would give anything to figure out how to toss her hair and flirt with boys.

Autism is “Rain Main,” with his barely-but-functional speech and misunderstanding of nuances, his bright and amazing understanding of facts and dates and places.

Autism is them. We are all the same. Not the same. And they are no less “disabled” because they are higher functioning.

But it is more than them, too.

It is the severely disabled adults, who have come to the table of awareness too late, adults who watch “Wheel of Fortune” religiously in their parents living room at night. The ones who have never had a job, who live with aging parents that wring their hands. Who will help him dress when I am dead and gone?

It is the 17-year-old boy, who in anger and 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. Please, come back.

And it is my own boy, unable to answer basic questions. How was your day, Dominic? Do you feel sick? How old are you? 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, perfect spelling. YouTube videos for days, ding ding. Schindler Elevator. Floor eight. Seven. Six. Five. Ding, ding. I watch him watching this video 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. He is so smart, so deliberate. This is autism, too.

My own boy who has never said “Mom” with authenticity, who will not date girls or drive cars, who struggles with tying his shoes at 13 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 and the how and lead us back to the I Don’t Know. There is no cure for us, no medication to make us healed. 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 autistic adults. The severely disabled. The non-quirky kids. The heavily impaired. My son. Do not push us out or make us redundant.

We are not always so beautiful. Our face of autism is sometimes not quite as perfect.

But we are community too, and we want to be there, with you.

“Please, do not forget us ... Do not push us out or make us redundant.”

Maybe our voices aren’t as loud. Maybe we can’t speak at all. Maybe we are hard to see. Maybe we are not in the classroom every day. Maybe we are in a different school altogether. Maybe we are not on television.

Maybe we are outside. Maybe we are 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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