We Are Autism, Too.

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 four. ” 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 he 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 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 gone, 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 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 on the island of disconnect.

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

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 or kiss or hug. 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 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, 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 14 year old boy, who in anger and fear and unspoken lonliness, 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?  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.  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 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 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 adults, the severely disabled.  The non-quirky kids, the wholly impaired. Do not push us out or make us redundant.

We are not so beautiful, our face of autism is not quite as perfect.

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

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, 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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10 Comments

    • I have autism an was more classic as a child teen to .didnt become more HF till an adult .but I still struggle but some of my friends are lower f I have a few HF then me .then I see kids who I never no had asd .as I was some what non verble an very echolic .not whst like you said people think of now .my mom got the refrigerator mother crap .that happen a lot back in the day .i was a child in the 70s when autism was 1 in 10,000 or something

      Reply
    • I might totally go all FanGurl right now and start jumping up and down. (Be cool, Nicole, BE COOL). Cause I’ve read some of the funniest things ever on your website. (Be COOL, Nicole!). Thank you SO MUCH for reading and for being here and for the comment. You made my night awesome. <3

      Reply
  1. Very beautiful! I my cousin has a nine year old daughter with autism. She doesn’t speak much but she is a great little artist and a very smart girl. I fear that my nineteen moth old son may have autism. He hasn’t started talking yet and I worry so much for him. Reading your beautiful words brought tears to my eyes. Thank you for sharing.

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    • Eddie, try not to worry. I say this as I know deep down, of course I would be frantic with worry too. <3 My youngest son didn't talk at all until he was 2 and I thought, this is it---we have another with autism. And my heart was breaking because I was going through so much with my older son (the one who I wrote this piece about, who at age 11 has severe autism). But now, at 6, my youngest was just moved out of speech therapy. He talks equal to, or better than, any other 6.5 year old and has no other delays. It is more likely t be a delay than autism, if that comforts you. No matter what---I hope it works out for the best for you. Hugs---thank you for reaching out. <3

      Reply
  2. Thank you, I just love him so much. He has a twin sister that will repeat any word you say to her. It’s hard to watch him struggle to let you know what he wants when she is so far advanced over him. He gets upset so easily and he’s very hard to calm down. My in-laws say he’s just a cry baby but it feels lime more. Thank you for sharing your kind words. I love reading about the relationship you have with your Son.

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  3. Nicole,
    This blog moved me to tears. I was thrust into the world of autism when my first grandchild was born. I knew Jack was different very early on, maybe 6 months old.. he was and is a beautiful blonde with gorgeous blue eyes. Jack is higher functioning, he has had one on one paras, inclusion classrooms. He is now in high school, 1/2 day in school, 1/2 day in Votech for carpentry. Jack and I have a special relationship, I have been a second to his Mom as his parents are divorced, and his Dad lives in another state. But Jack is not the topic of my comment, just a little history of me, for you. I will try to make this brief, but not miss anything. I retired in April from 27 years in banking, my husband is ill and I needed more flexibility in my life to help him. I took on a per-diem job as a Para-educator for a sub agency…..just so used to working. It is on my schedule, I pick the jobs I want, work when I want, etc. I normally only take one or at the most 2 day jobs and was working 2 or 3 days a week. All of the jobs that came on my calendar were for special needs or emotional support classrooms…..seemed what I was supposed to be doing. Then THE job came up for coverage, it was 3 days, there were no other jobs that week, I figured what the heck. When I arrived at the school I discovered I was assigned to the Autism Support class, we usually know before hand…still not sure why it wasn’t listed as such, but that is ancient history now. I have been working in this classroom 4 days a week ever since. I love these kids, so does their teacher, their nurses, and the other para. The school district has asked me to apply for a FT position, under normal circumstances I would, but I need the flexibility the sub position affords me. I tell you all this, because I understand the “who will care for him when I am gone” We are out there, those of us with a heart for these beautiful people. I feel placed, blessed, privileged, to work with these children, and will stay as long as they need me. I look at them all and wonder…what will happen, where will they go when they age out of the school programs, and a quiet voice that I try to listen to tells me……they are out there…those that love them…….

    Reply

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