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自閉症者の語る自閉症の世界


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ミニ講演(講演原稿英語訳)
by 東田直樹

 Hello. My name is Naoki Higashida. I am a junior of a correspondence high school. At home, I study and do creative work. I jog with my father in mornings, and sometimes go bowling, shopping, or go to the library with my support person.
 I have severe autism. When I had no means of communication, I was so alone like a lost and lonely crow in town. Nobody understood me, no matter what I did such as going wild, crying and screaming. Upon hearing the word “sever autism,” you may imagine a person who cannot speak, cannot understand others’ feelings, and lacks imaginative abilities.
I, too, did not think myself such a day would come when I could become able to communicate and tell you my message like this.
 Regardless of my inability to speak, I always had had words inside of me much like everyone else even before I started to write with support. During that time, I waited for someone who could rescue the real me out of my body that was like a broken robot.
There are many people who are aware that people with autism do understand many things even though they may not be able to speak. It has been a well-known approach used by such people, in efforts to understand what the person with autism is thinking, to show a schedule by pictures or to have him or her choose a picture card to indicate for instance a place the person wants to go. I would imagine a hand-over-hand assistance might have been provided to teach the meanings of the picture cards or how to use them.
 I learned to write in a same way. It was not that I couldn’t write before I had started to write with support. But I needed the physical support in order to learn how I should activate or move my inner feelings and how to express them by writing so I could use it as a way of self-expression.
 If you support someone with autism to select and to pick up a card by providing a hand-over-hand assistance, once you get used to it, you will gradually notice the person's own movements in the hand action. When it comes to writing, though, it becomes a bit more complicated, first because the hand movements themselves are complex to write words, but also, writing about feelings can be overwhelming, reflecting on and having flash back of my struggles and sadness. So writing for communication requires emotional support of a person who assists me in writing.
 In my case, I started from having someone hold over my hand and writing letters on paper together. Then after a while, my mother invented a new way of communication, which we call “facilitated finger writing.” In this, I use my right index finger as if it were a pen and write on the palm of someone's hand. This way, I can write more easily with no tool needed, which enabled me to have conversations with my mother at a great speed.
 But people didn’t believe that I was the one who was writing and communicating. It strongly motivated me to become independent with communication.
 I practiced to write independently with no physical support. However, much similar to what happened when I tried to speak, my mind went blank while I was trying to form a letter on paper, and I could not write what I wanted to write. In my struggle to put a train of letters out before I forget next letters or words, I eventually arrived at using a letter board and pointing at letters that were laid out like a computer keyboard. It was when I was eight years old. My mother made the letter board for me. I was encouraged when I learned that there were people in other countries who used a similar        communication approach. Since then I have gradually decreased the amount of physical support I received, from the hand-over-hand, to being supported at my elbow, at my shoulder, and on my back. Then at the age of twelve, I became able to point the letters on a letter board independently, which led me to use a computer and to type creative stories and poems on computer.
 There must be many more people with autism who, like how I used to be, have the inner worlds but have no means to express them.
 We are more sensitive than you think. Please think about it. What it is like for a person to communicate who has never communicated his or her real words to others before. So, it may be difficult to facilitate someone’s writing or typing, unless the facilitator is a person whom the communicator can truly trust and also is accustomed to facilitation. Even to this day, I sometimes become unable to type well, confused by stimulations or by emotional anxiety. But having someone I can trust sit beside me enables me to calmly type.
 As a person who cannot speak, I had thought that I should write so people can read my words and to know more about me. I thought that was a way for me to connect with the world. So I became a writer.
 Being a severely autistic person, I may be thought to be unable of understanding anything, but I’m always listening to people around me. I watch TV and enjoy music. I also read some books, although not a whole lot. Having been wanted to be normal, I observed people around me. Even though I could not behave like they did, I observed the world of normal people, which seemed full of mysteries to me, as if I had been watching a space movie. Once I became able to write sentences, not only I wrote about my thoughts as poems but also I wrote stories in which I appeared as the main character living in the world of so-called normal people. By writing a story where I can imagine myself as a main character, I freely traveled through their world.
  In a sense, as a person with autism, I may be unable to understand the behaviors and thoughts of normal people. As I write stories, I always wonder whether normal people can understand what I mean by my writings. So when I write, I pay close attention to whether there are gaps between my own perspective and others’ perspectives. Thus I get really happy when many people read my books and I receive comments from the readers, because I feel like I got closer to their world.
  I have hated not-normal myself for always causing people troubles and having nothing to contribute. I tried to be like everyone so I could live in this society. But I noticed that, while there were things I could do if I made efforts, there were things that I could never do no matter how hard I tried. In addition, there are differences between what I like or what is important to me and what others like or value. I was realizing the differences in values and ways of thinking between others and me in a way not to deny myself entirely.
I think that “the world of autism narrated by people with autism” is something to be revealed more and more in future.
 For instance, an example of how I experience the world may be different from how most people experience the world is my experience with rain. My first reaction to rain is to be surprised at its sounds. Though everyone seems to know it rain instantly from hearing its sounds, I first become anxious, unable to tell what sound it is and where it comes from until someone tells me it’s rain. That is why I stare at rain so I can connect the sounds to the rain. But then I become so absorbed in watching raindrops that I forget where I am now. The feeling of continuous raindrops coming down from the sky and falling through my body on the ground causes me to forget myself. Like this, in the world of autism, there are sensory perceptions and ways of thinking that only people with autism can explain.
 Now I wonder whether everything about autism is bad. This is me - a person with autism. I dearly love people who love me. And I think there are great things too in the world of autism that only we know. Just as lives of each person has a meaning, I believe that my being born autistic should have a meaning.
 Being understood with empathy by others greatly relieves our distressed hearts. So this is of particular value for me to be able to tell you about my thoughts here today. I think that mutual understanding is the first step toward tomorrow’s hope. I want to believe that we - you and us, the people with autism - share the same future and share this world together.


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