Thinking in Pictures: My Life with Autism (4 page)

As a teenager and young adult I had to use concrete symbols to understand abstract concepts such as getting along with people and moving on to the next steps of my life, both of which were always difficult. I knew I did not fit in with my high school peers, and I was unable to figure out what I was doing wrong. No matter how hard I tried, they made fun of me. They called me “workhorse,” “tape recorder,” and “bones” because I was skinny. At the time I was able to figure out why they called me “workhorse” and “bones,” but “tape recorder” puzzled me. Now I realize that I must have sounded like a tape recorder when I repeated things verbatim over and over. But back then I just could not figure out why I was such a social dud. I sought refuge in doing things I was good at, such as working on reroofing the barn or practicing my riding prior to a horse show. Personal relationships made absolutely no sense to me until I developed visual symbols of doors and windows. It was then that I started to understand concepts such as learning the give-and-take of a relationship. I still wonder what would have happened to me if I had not been able to visualize my way in the world.

The really big challenge for me was making the transition from high school to college. People with autism have tremendous difficulty with change. In order to deal with a major change such as leaving high school, I needed a way to rehearse it, acting out each phase in my life by walking through an actual door, window, or gate. When I was graduating from high school, I would go and sit on the roof of my dormitory and look up at the stars and think about how I would cope with leaving. It was there I discovered a little door that led to a bigger roof while my dormitory was being remodeled. While I was still living in this old New England house, a much larger building was being constructed over it. One day the carpenters tore out a section of the old roof next to my room. When I walked out, I was now able to look up into the partially finished new building. High on one side was a small wooden door that led to the new roof. The building was changing, and it was now time for me to change too. I could relate to that. I had found the symbolic key.

When I was in college, I found another door to symbolize getting ready for graduation. It was a small metal trap door that went out onto the flat roof of the dormitory. I had to actually practice going through this door many times. When I finally graduated from Franklin Pierce, I walked through a third, very important door, on the library roof.

I no longer use actual physical doors or gates to symbolize each transition in my life. When I reread years of diary entries while writing this book, a clear pattern emerged. Each door or gate enabled me to move on to the next level. My life was a series of incremental steps. I am often asked what the single breakthrough was that enabled me to adapt to autism. There was no single breakthrough. It was a series of incremental improvements. My diary entries show very clearly that I was fully aware that when I mastered one door, it was only one step in a whole series.

April 22, 1970

Today everything is completed at Franklin Pierce College and it is now time to walk through the little door in the library. I ponder now about what I should leave as a message on the library roof for future people to find.

I have reached the top of one step and I am now at the bottom step of graduate school.

For the top of the building is the highest point on campus and I have gone as far as I can go now.

I have conquered the summit of FPC. Higher ones still remain unchallenged.  Class 70

I went through the little door tonight and placed the plaque on the top of the library roof. I was not as nervous this time. I had been much more nervous in the past. Now I have already made it and the little door and the mountain had already been climbed. The conquering of this mountain is only the beginning for the next mountain.

The word “commencement” means beginning and the top of the library is the beginning of graduate school. It is human nature to strive, and this is why people will climb mountains. The reason why is that people strive to prove that they could do it.

After all, why should we send a man to the moon? The only real justification is that it is human nature to keep striving out. Man is never satisfied with one goal he keeps reaching. The real reason for going to the library roof was to prove that I could do it.

During my life I have been faced with five or six major doors or gates to go through. I graduated from Franklin Pierce, a small liberal arts college, in 1970, with a degree in psychology, and moved to Arizona to get a Ph.D. As I found myself getting less interested in psychology and more interested in cattle and animal science, I prepared myself for another big change in my life— switching from a psychology major to an animal science major. On May 8, 1971, I wrote:

I feel as if I am being pulled more and more in the farm direction. I walked through the cattle chute gate but I am still holding on tightly to the gate post. The wind is blowing harder and harder and I feel that I will let go of the gate post and go back to the farm; at least for a while. Wind has played an important part in many of the doors. On the roof, the wind was blowing. Maybe this is a symbol that the next level that is reached is not ultimate and that I must keep moving on. At the party [a psychology department party] I felt completely out of place and it seems as if the wind is causing my hands to slip from the gate post so that I can ride free on the wind.

At that time I still struggled in the social arena, largely because I didn't have a concrete visual corollary for the abstraction known as “getting along with people.” An image finally presented itself to me while I was washing the bay window in the cafeteria (students were required to do jobs in the dining room). I had no idea my job would take on symbolic significance when I started. The bay window consisted of three glass sliding doors enclosed by storm windows. To wash the inside of the bay window, I had to crawl through the sliding door. The door jammed while I was washing the inside panes, and I was imprisoned between the two windows. In order to get out without shattering the door, I had to ease it back very carefully. It struck me that relationships operate the same way. They also shatter easily and have to be approached carefully. I then made a further association about how the careful opening of doors was related to establishing relationships in the first place. While I was trapped between the windows, it was almost impossible to communicate through the glass. Being autistic is like being trapped like this. The windows symbolized my feelings of disconnection from other people and helped me cope with the isolation. Throughout my life, door and window symbols have enabled me to make progress and connections that are unheard of for some people with autism.

In more severe cases of autism, the symbols are harder to understand and often appear to be totally unrelated to the things they represent. D. Park and P. Youderian described the use of visual symbols and numbers by Jessy Park, then a twelve-year-old autistic girl, to describe abstract concepts such as good and bad. Good things, such as rock music, were represented by drawings of four doors and no clouds. Jessy rated most classical music as pretty good, drawing two doors and two clouds. The spoken word was rated as very bad, with a rating of zero doors and four clouds. She had formed a visual rating system using doors and clouds to describe these abstract qualities. Jessy also had an elaborate system of good and bad numbers, though researchers have not been able to decipher her system fully.

Many people are totally baffled by autistic symbols, but to an autistic person they may provide the only tangible reality or understanding of the world. For example, “French toast” may mean happy if the child was happy while eating it. When the child visualizes a piece of French toast, he becomes happy. A visual image or word becomes associated with an experience. Clara Park, Jessy's mother, described her daughter's fascination with objects such as electric blanket controls and heaters. She had no idea why the objects were so important to Jessy, though she did observe that Jessy was happiest, and her voice was no longer a monotone, when she was thinking about her special things. Jessy was able to talk, but she was unable to tell people why her special things were important. Perhaps she associated electric blanket controls and heaters with warmth and security. The word “cricket” made her happy, and “partly heard song” meant “I don't know.” The autistic mind works via these visual associations. At some point in Jessy's life, a partly heard song was associated with not knowing.

Ted Hart, a man with severe autism, has almost no ability to generalize and no flexibility in his behavior. His father, Charles, described how on one occasion Ted put wet clothes in the dresser after the dryer broke. He just went on to the next step in a clothes-washing sequence that he had learned by rote. He has no common sense. I would speculate that such rigid behavior and lack of ability to generalize may be partly due to having little or no ability to change or modify visual memories. Even though my memories of things are stored as individual specific memories, I am able to modify my mental images. For example, I can imagine a church painted in different colors or put the steeple of one church onto the roof of another; but when I hear somebody say the word “steeple,” the first church that I see in my imagination is almost always a childhood memory and not a church image that I have manipulated. This ability to modify images in my imagination helped me to learn how to generalize.

Today, I no longer need door symbols. Over the years I have built up enough real experiences and information from articles and books I have read to be able to make changes and take necessary steps as new situations present themselves. Plus, I have always been an avid reader, and I am driven to take in more and more information to add to my video library. A severely autistic computer programmer once said that reading was “taking in information.” For me, it is like programming a computer.

Visual Thinking and Mental Imagery

Recent studies of patients with brain damage and of brain imaging indicate that visual and verbal thought may work via different brain systems. Recordings of blood flow in the brain indicate that when a person visualizes something such as walking through his neighborhood, blood flow increases dramatically in the visual cortex, in parts of the brain that are working hard. Studies of brain-damaged patients show that injury to the left posterior hemisphere can stop the generation of visual images from stored long-term memories, while language and verbal memory are not impaired. This indicates that visual imagery and verbal thought may depend on distinct neurological systems.

The visual system may also contain separate subsystems for mental imagery and image rotation. Image rotation skills appear to be located on the right side of the brain, whereas visual imagery is in the left rear of the brain. In autism, it is possible that the visual system has expanded to make up for verbal and sequencing deficits. The nervous system has a remarkable ability to compensate when it is damaged. Another part can take over for a damaged part.

Recent research by Dr. Pascual-Leone at the National Institutes of Health indicates that exercising a visual skill can make the brain's motor map expand. Research with musicians indicates that real practice on the piano and imagining playing the piano have the same effect on motor maps, as measured by brain scans. The motor maps expand during both real piano playing and mental imagery; random pushing of the keys has no effect. Athletes have also found that both mental practice and real practice can improve a motor skill. Research with patients with damage to the hippocampus has indicated that conscious memory of events and motor learning are separate neurological systems. A patient with hippocampal damage can learn a motor task and get better with practice, but each time he practices he will have no conscious memory of doing the task. The motor circuits become trained, but damage to the hippocampus prevents the formation of new conscious memories. Therefore, the motor circuits learn a new task, such as solving a simple mechanical puzzle, but the person does not remember seeing or doing the puzzle. With repeated practice, the person gets better and better at it, but each time the puzzle is presented, he says he has never seen it before.

I am fortunate in that I am able to build on my library of images and visualize solutions based on those pictures. However, most people with autism lead extremely limited lives, in part because they cannot handle any deviation from their routine. For me, every experience builds on the visual memories I carry from prior experience, and in this way my world continues to grow.

About two years ago I made a personal breakthrough when I was hired to remodel a meat plant that used very cruel restraint methods during kosher slaughter. Prior to slaughter, live cattle were hung upside down by a chain attached to one back leg. It was so horrible I could not stand to watch it. The frantic bellows of terrified cattle could be heard in both the office and the parking lot. Sometimes an animal's back leg was broken during hoisting. This dreadful practice totally violated the humane intent of kosher slaughter. My job was to rip out this cruel system and replace it with a chute that would hold the animal in a standing position while the rabbi performed kosher slaughter. Done properly, the animal should remain calm and would not be frightened.

The new restraining chute was a narrow metal stall which held one steer. It was equipped with a yoke to hold the animal's head, a rear pusher gate to nudge the steer forward into the yoke, and a belly restraint which was raised under the belly like an elevator. To operate the restrainer, the operator had to push six hydraulic control levers in the proper sequence to move the entrance and discharge gates as well as the head- and body-positioning devices. The basic design of this chute had been around for about thirty years, but I added pressure-regulating devices and changed some critical dimensions to make it more comfortable for the animal and to prevent excessive pressure from being applied.