Wetherblog

Longing to escape from my prison, longing to let someone know that I was very smart, longing to stop wasting my years in school and longing to say “I love you” to my family, I tried once again to alert someone to my predicament. My hopes for success weren’t very high.

I am autistic — my prison is my own body. I don’t know how to begin to explain the constraints my body puts on me, though I will try. My body won’t obey my mind. Only silly noises emerge from my mouth when I try to talk. I can’t do the simplest of tasks, such as tying my shoes or writing my name. There are the times when I totally lose control of what my body does. I refer to those moments when I do loud and crazy things as “losing it”. I can tell when those “losing it” explosions are coming, but I can’t always stop them. My body and my emotions take over and I don’t regain control for a long time.

Inside, I feel and think the same way that everyone else does. Other people have the same feelings that I have. They feel the same way that I do in stressful situations. They control their distress. Because I am autistic, I can’t control mine.

Because of this, people can’t see the real me. They see someone who acts compulsively, doing crazy things. They see someone who needs laborious training to master even the simplest of tasks. Even when a task has been mastered, they see someone unable to initiate that task. My inside self is embarrassed by my body’s inability to do “normal everyday” tasks.

Until the age of 13, though, my biggest problem was that I had no way to communicate with the rest of the world. Many methods of communicating were attempted, such as sign language, some type of picture board, or typing on a computer. Because my body wouldn’t obey my mind, none of these efforts succeeded. Consequently, I was thought to have a mental age equivalent to a two-month-old baby. My only efforts at communication that somewhat succeeded were screaming, biting my hand, and hugging my family.

A side effect of my inability to communicate was that people held few expectations of me. They rarely addressed me in conversation. As a consequence, I rarely paid attention or reacted appropriately to conversation around me. No one knew that I could understand everything said in my presence.

I was in the Severely and Profoundly Physically and Mentally Handicapped Class in a local elementary school. I was receiving speech therapy, something I had been receiving since I was four years old. Maybe a better term would be “communication therapy”, because speech therapists seek ways for everyone to communicate, even nonverbal kids like me. These years of therapy had helped me in some ways, but didn’t enable me to communicate, though we explored many alternatives to actual speech.

To escape from my autistic prison, I needed to communicate with somebody. When I was 13, Sue Leedy was my school speech therapist.

I remember sitting with my parents, listening to Sue recommend that we stop my speech therapy since so little progress had been made over the years. This didn’t bother me since therapy hadn’t opened any doors for me. However, my dad and mom didn’t want to give up. Sue suggested that we make one final attempt, using a picture board.

Using a picture board means pointing to a picture of a hamburger if you want something to eat or to a picture of a school bus if you want to go to school. Of course, understanding this concept was easy, but using the board was nearly impossible for me. I couldn’t get my pointing finger to touch the right choice of pictures.

During my years of communication therapy, I did learn one crucial skill – to isolate one finger as a pointer. Someone was always asking me to point at things that they wanted me to identify, like shapes or colors. I could rarely point at the right object, but I could point at something. Because of my inaccurate pointing, I knew a picture board wouldn’t work any better this time than it had worked the last time someone tried it with me.

Sue’s board was different from past boards. She happened to use pictures with writing on them. For instance, the picture of the school bus would have printed below it something like “A school bus takes you to school”. Sue didn’t mean for me to read them, because no one had any idea that I could read. She just used the best pictures that she had on hand. The words were right under the pictures. Despite my skepticism about the board idea, I saw these words as an opportunity.

The words under the pictures motivated me to try something that I had tried many times before. I tried to let someone know that I could read by pointing to words rather than to pictures. The problem with these attempts to show that I was intelligent was that I couldn’t point very well. When I did point to words, people probably assumed that I had missed the picture that they thought that I was trying to point at. When Sue asked me to point to something to eat, I would often do something like point to the words under the school bus. But I always tried to point to words instead of a picture. I actually succeeded quite often, because this time the words were right under the pictures and easier to hit than usual. I still expected nothing from my efforts, because they never had worked before.

Much to my amazement, Sue picked up on my pointing to the words and, for the first time, someone entertained the thought that I might be able to read. I had had little hope that anyone would actually “get it” when I pointed at words. It was like walking through a casino and pulling on the same slot machine each time I passed it, with no expectation of actually hitting the jackpot. Now I had to confirm her “wild idea” that I could read if I was to collect my jackpot.

Sue began by showing me cards to match together. Some had a word on them like “computer” and the rest had pictures of the word items. I had been asked for years to match cards by color, so this task wasn’t totally beyond me. She showed me the word sometimes and asked me to point to the right picture. Sometimes she did the opposite. I was right in my pointing about half of the time. Since there were many more than two choices, this was a higher number of successes than would be expected if I were doing random guessing. Sue was getting very excited. I was too.

Next, she tried cards with sentences on them like “The boy is kicking the ball” or “The girl is brushing her teeth.” She again had pictures to match. Again, I got about half of them right. This seemed to imply that I could grasp a series of ideas from one picture or sentence. My supposed mental retardation was now in doubt. More excitement! But Sue wasn’t done.

Why was I only right half of the time? Sue had a theory. She thought that I was missing because I often shifted my eyes around, not looking directly at the cards. Actually, I could see the card that I wanted to point to perfectly. I missed anyhow. I still don’t know why I missed, except that it is part of the results of being autistic. Sue acted on her theory.

Even when I was 13, Sue was half my size. She reached up and grabbed my chin and aimed my eyes at the cards. Much to my surprise, I could suddenly point to the right card almost every time. Sue thought she had figured it out – my eyes weren’t tracking the cards half the time. I knew that my eyes were already tracking the cards all of the time – I didn’t understand it – there was no apparent reason for my newfound accuracy. It was really strange how Sue’s holding my chin allowed my finger to go where I wanted it to go. Nevertheless, someone now knew that there was more to me than was apparent from the outside. At last! Someone got my message!

This happened in the spring of 1991. The journey leading me from a special education class to the college classroom began when Sue noticed the significance of my pointing to the words on my picture board and her touch on my chin was also a major step. Thank goodness Sue acted on her incorrect theory about why I missed my target when pointing. It helped lead my family and me to a communication method called Facilitated Communication (FC), which depends on human touch as a way to allow me to point to letters on a letter board. Without FC, there would have been no journey. This journey was filled with many miraculous moments, but none more crucial to my escape from the imprisonment of my autistic body than Sue’s moment of revelation.

This entry was posted on Monday, May 14th, 2007 at 4:14 pm and is filed under Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.