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 ever avoid their staring eyes. I’d have to dash past them. I also couldn’t sit in vinyl chairs, eat mushy things, flush the toilet when I was stressed, 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 lunch: One jelly sandwich, Fritos, and pudding (hot in the thermos), with 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 for it proved I could be flexible and make a change!
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 kicked my leg, hard. After awhile, I began sticking my other leg in the aisle too. You see 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 in 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 is true! Long distance communication through snail mail pen pals has been a big part of my life (with other Aspergians). It’s also easier than face to face. I came to know a little girl at the age of five (she moved away when she was 12) who had never had oral speech. She knew a few signs, and if you paid attention, she “spoke” in many, many ways; if you listened. She liked to lean back on a slide and look up at trees holding hands, the way I used to do (still do!), with the sun shining through the branches.
My interest in writing started young. My Grandma was hearing impaired. She was a fragile woman with a playful air about her and she always had a sly wink for me. 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, 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. What’s more important to acknowledge however is the perseverance, the strength needed to face every day, the pep talks one gives one’s self, 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. 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.’ I wanted to sit on a rock in the woods 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. With paints, with grout when I do mosaics, with cats, dogs, trees! My hands are never still. Maybe my vocal cords have not been used as much as other people throughout my lifetime, but my hands have been loud! All this time they’ve been making murals. There’s that one I helped paint on the school’s concrete wall for the bicentennial in sixth grade. And the two at the day center in 2007, and then there’s all those paintings I’ve done! That’s a form of communication.
Communication 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 alas! Through the arts of writing and painting, I find expression easiest of all. With autism, people need to listen with their eyes! 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? Pay attention. I am a student, a mother, a person who has tried to turn my natural strengths (writing, painting, researching, nurturing) into sustaining and rewarding activities. Through the arts the uninterrupted flow of expression is a means to say simply, ‘Here I am. I exist.’
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!