With kids returning to school, my early experiences come to mind and so does the longing for kids to be allowed to ‘just be’ who they are, with no one getting to decide what normal is.
Growing up, I never bothered looking at people long enough to see them as anything other than blurry models out of Matisse paintings; jumbled but interesting. I especially hated pictures of relatives hanging on walls. You could never avoid their staring gazes. I’d dash past the eyes; usually looking right into your own.
I also couldn’t sit in vinyl chairs, eat mushy things, flush the toilet when I was stressed (the guttural noise at times terrifying), step on the black parts of the linoleum, wear noisy “click-clack” shoes or take showers (as opposed to baths.)
For seven years straight I had the same thing for my grade school bagged lunch: One jelly sandwich, Fritos, and pudding (hot in the thermos), with some milk. I changed things up in high school and for the next few years had one orange, chocolate milk, and a cheese sandwich for lunch. I was proud of myself. It proved I could be flexible.
I did like the academic side of schooling. But balls would bounce off my face in gym. Not once did I ever consider it as a place to acquire friends. In fact, the others held their hands in front of my face, “Yoo-hoo? Is anyone in there?”
There was a girl in my grade school class who would kick me till I was black and blue because I did not speak. She couldn’t figure me out, so she lashed out. In addition to Aspergers, I’ve got a dual diagnosis of selective mutism. This means my oral speech takes a freefall down my throat like a runaway elevator. Every time that girl walked down the aisle by my desk, she casually, discreetly, kicked my leg, hard. After a while, I began sticking my other leg in the aisle too. I wanted both legs to get bruised evenly. I was telling my mother I was clumsy, falling down a lot, falling off my bike. She would never believe I was only falling down on one side.
When I was diagnosed with Aspergers around 2000, I was told by a peer that I would “feel a kinship, a belonging such as I had never known, with others that have Aspergers, and also with even the most severely affected on the autistic spectrum.”
This statement proved to be true. Long distance communication through snail mail pen pals has been a big part of my life since the 90s. It’s easier than face to face. I came to know a little girl in my neighborhood who was the age of five (she moved away when she was 12) who unlike me, had never had oral speech. This was not selective mutism. This was in fact her expression of autism. She knew a little sign language, so I learned a few signs too. But if you paid attention, she “spoke” in many, many ways; if you listened.
She had such unrestrained joy on her face when, in her family’s living room, she squeezed in between their big wooden entertainment unit and the wall, to access the heating grate so she could make sounds by running her hands along it. This was music and she had made it herself. I squeezed in there too, and she did not cringe from my close proximity. We made music together.
Outside, she liked to climb in between an old shed and a fence, where a discarded slide was wedged. She’d climb partway up, suspend there, lean back her head, and with the sun shining through the branches of the Maple tree, she’d sit there as long as she was allowed to, just watching the dappled patterns and the way they changed through the mosaic of branches when the sun shined through and the wind rustled them. Now her face was awe-filled and from afar, I recognized this as one of my favorite past-times as a child something I still adore.
I eventually realized there were people who understood me; in much the way I understood the little girl, not only peers with similar diagnoses, but people in the programs like the one I was a part of for several years after my husband died in 2005: The Connecticut Autism Pilot Project. It was Alison, from that program, who asked me to retrieve dusty (literally they were dusty) painted canvases from my closet to show her. Some had areas cut out and stored in an envelope. All were kept in the dark, unseen by anyone but me and my family who’d seen me paint them.
Alison led me towards developing my interests, passions, and talents and showed me that these were there all along, ways I was communicating and so I began to (reluctantly) share these expressions.
My interest in writing started young, on napkins, in diaries, on discarded paper plates. My Grandma was hearing impaired. She was a fragile woman with a playful air about her, thin wisps of white hair on her head and a cigarette always smoldering nearby. She always had a sly wink for me.
We were so unlike. As a child I had an aversion all things smoking-related. Had to watch the ground everywhere I walked so as not to even step on a cigarette butt. I don’t think I ever have to this day. If I feel anything, through the soles of my shoes- a bottle cap, a pebble, I shudder.
Being adopted, this grandmother and I bore no resemblance to each other. I had very thick unruly black hair; and was a tall amazon even at age 12. She was my contrast: thin, short, frail. I barely spoke, and she couldn’t hear. Unfortunately, she could read everyone’s lips but mine.
I didn’t speak up, they said.
I didn’t enunciate, they said.
No matter, because we found our own way to communicate. I found a way to have a voice. I wrote her long sprawling notes in my little kid scrawl and she read every single word silently to herself, answering me aloud afterward.
In 2012, as an adult, when I saw the movie The King’s Speech I was near tears throughout it, as I could identify with the humility, anger, frustration, embarrassment, sadness and all the other mixed emotions that impaired communication can bring. I brought this to the attention of my speech pathologist at the time, the wonderful Judith Rosenfield, and because of my connection to this film, and the way in which I described my attachment to the inability to communicate when one wanted to the most- Judy renamed her facility “King’s Speech & Learning Center.” It still has that name to this day and I highly recommend her, she truly ‘gets it.’
What’s important to acknowledge for anyone with a communication challenge, is the perseverance needed; the strength summoned to face every day, the pep talks one gives one’s self, and also the importance of accepting help when one is by nature a true loner.
I admire fluent oral speakers, but I remind myself that they too possess fears and foibles. Speaking is an art. Tom Iland is someone who is excelling at this; and I am so in awe of him. I will never take speech for granted. When I was 12, I thought drinking a bottle of vodka would make me a “chatty Kathy.” It put me in a coma and I nearly died. My attempt to change my natural inclination toward silence nearly silenced me forever. I had to learn to accept my ‘biological make-up.’ Over the years, I would come to embrace it.
But it wasn’t easy? Is anything worthwhile easy?
Nowadays I can ‘help’ others behind the scenes, as I sometimes act as a consult to young college students studying to be teachers who work with children with developmental challenges and also with selective mutism.
Like my young friend I mentioned earlier, I wanted to sit on a rock in the woods in all my free time; and stare at the lacy tree canopy in its shades of emerald, celery, and pea green…above my head, rather than join the kids in their boisterous and noisy games on the cul de sac.
Now I know that that was MY normal, and that’s okay. I connect with nature. It fills me the way social engagement fills other sorts of people. With paints, with grout when I do mosaics, with cats, dogs, trees, I am filled. The ‘low battery’ light stops flickering. Too much social engagement? The battery dies and needs a recharge.
Trees especially, I can hear them and feel them. My hands are never still. And neither is my thinking. Maybe my vocal cords have not been used as much as other people throughout my lifetime, when it seemed to matter the most; but my hands have been loud. Oh- there is such a thing as mimicking, or studying interactions, and developing a way to mask, “small talk” one’s way through daily social interactions (that seem meaningless), but that is exhausting and against my grain so it can’t be kept up.
Communication (and that can be through writing, or speaking or through art) connects, soothes, reaches multitudes, teaches, moves, inspires, and more. Anxiety is a cruel slayer of spoken word, of expression. Not having words makes you so vulnerable. But through the arts of writing and painting, I find expression easiest of all. With autism, people can listen with their eyes. And look with their ears.
There are loud hands all around, busily communicating if your heart listens. Whoever said autistic people don’t use body language? And I’m not talking about when they’re masking.
I am a student, a mother, a person who has tried to turn my natural strengths (writing, painting, attention to detail, researching, nurturing) into sustaining and rewarding activities and a job in software too. I had to learn to accept help before any of that was possible. I had to do so much that was beyond my comfort bubble, (my invisibly mime’s box) and I had to accept rejection a lot; and just keep going.
I have to think of the invisible box now, not as the mime forever palming it and trying to break through, but as a necessary go-to, like Wonder Woman’s invisible car always being available when needed.
I think of the clique of girls in high school who didn’t understand me, and the one who would always corner me when I was alone. She would say, “Are you gonna’ be a shy little bitch your whole life?” Or she would sometimes exchange the word “bitch” with “scared little rabbit.”
Through the arts, the uninterrupted flow of expression is a means to say simply, ‘Here I am. I exist.’ I am not shy. I am not scared. My expressions don’t match my inside emotion a lot of the time. I am autistic.
By the way, I’m strong enough now to take less crap from people. If someone kicked me, I wouldn’t kick back (that would be stooping to their level) but I would definitely find a way to communicate my displeasure!
Kimberly Gerry-Tucker is an artist, QA tester, and writer. She is the author of Under The Banana Moon, living, loving, loss and aspergers/selective mutism. She resides in Connecticut with her pets and significant other Al and serves on the board for The Art of Autism.