Emma gave me permission to quote her words, written this past Sunday.
“Please remember that my mind tells my body and my mouth to do all sorts of wonderful things constantly, but they don’t obey.
“Sometimes I want to scream. I am trying so hard, but no one notices and they are annoyed instead of understanding.”
Emma wrote this in response to her gymnastics teacher, but it applies to so many instances where she confounds those around her by doing things she knows she shouldn’t, things she doesn’t want to do, doesn’t intend to do and yet does anyway. Typically people assume she is doing these things because she doesn’t care, or is trying to be mischievous, or “wants attention” or any number of assumptions people make when witnessing her actions. But in speaking with Emma, it is clear how incorrect these assumptions are. As Emma wrote, “I am trying so hard, but no one notices and they are annoyed instead of understanding.”
Sydney Edmond is an Autistic young woman who describes herself as “… locked inside a body that won’t cooperate.” Sydney published a book of poems, The Purple Tree and Other Poems. Recently Sydney gave a lecture to a group of Special Education students and educators at a high school. She generously gave me permission to reprint some of her lecture here.
“People need to know, because Society apparently thinks autistic people are lacking intelligence. Our wandering wayward eyes and hands flapping, screaming, and anxious stimming don’t help, either. But in truth, we polish our souls deep down inside where they can’t see us, while our dastardly bodies act in ways we can’t control. That’s right. I told you I have lousy control over my behavior. Can you relate? Perhaps you have moments when your body does things without your permission? When you lose control and shout at someone or hit out? Well imagine what it would be like if you were just the opposite, and were always out of control with little solid gold moments when all the pieces come together and knowledge passes impulse? For those moments we are the captain of our ship and we feel unbelievably perfect. But, passing time wipes it away. Possibility becomes disability again. Look at your fellow students with autism deeply and with patience. We are in here. And we are exhausted, panicked, and lonely.”
Ido Kedar, who wrote the book Ido in Autismland writes about the body/mind disconnect he experiences, as well as the embarrassment he then feels when his body does not do as he wishes.
“I feel it’s time autistic people finally say what it’s like to be drilled in flashcards over and over when your hands don’t move to your thoughts, or to have your teacher say in front of you that you can’t count because your stupid hands refuse the right number you’ve counted in your head. I remember standing miserable and embarrassed, holding the wrong number of straws and hearing my teacher say, “It’s clear he has no number sense,” as if I couldn’t understand or had no emotions either. When I think of these frustrating experiences I am grateful I am not in that situation anymore. But many of my friends still are. That’s why I cry for them.”
Sydney Edmond, from her recent lecture, wrote:
“I found freedom and wonderful joy when, as a ten year old, I was taught how to point to letters on a Letterboard and spell what I wanted to say. I eagerly worked, and within a few months, I was able to communicate. In the beginning, I needed a lot of support. I couldn’t even point my finger when I wanted to. My body, as usual, did not cooperate. I had to force it to, so all my words, stored away for ten years, could finally come out into the world. Do you want to know what I asked for? Well, I asked to have my own pizza. And then I asked to learn ballet. And piano. And I asked to learn about history. I was thirsty to learn. I finally had a way to ask questions that let people know I was intelligent. Soon I learned how to type on a keyboard and have a lovely voice added to my words. I went back to school to prove I was intelligent. I had been tested and told again and again I had the intelligence of an infant. Having a method to communicate turned it around. My language comprehension was college level in 8th grade when I was actually given a means to show what I knew.
“Loads of us, people all over the world, type to communicate. I am one of many, and we all want people who cannot speak to have the opportunity we are enjoying. I hope that my words today might spark a willingness to proceed on the journey of a lifetime. I hope one of you will take action to give a voice to someone who cannot speak.”
Ido, Sydney and Emma all began writing to communicate by using a letter board. All of them discuss what it is like to have a mind that “…tells my body and my mouth to do all sorts of wonderful things constantly, but they don’t obey.” Each of them describes their experience, whether that includes frustration, embarrassment, or shame and what it is like to be so thoroughly misunderstood.
I am grateful to each for allowing me to reprint their words in the hope that others will begin to reconsider their assumptions and how they then respond.