Thinking in Pictures: My Life with Autism (15 page)

This brings up another human emotion that I do not understand: denial. Some parents with children who are still not talking until age four cannot admit to themselves that something is wrong. I do not understand this kind of emotional lock on logic. Children with autism have to be taught what it is like to be in another person 's shoes in a very concrete way. When I threw dirt on another person, my mother explained that I should not throw dirt because I would not like it if they threw dirt on me.

I think there are different types of empathy For me to have empathy I have to visually put myself in the other person 's place. I can really emphasize with a laid-off worker because I can visualize his family sitting at the dining room table trying to figure out how the bills will get paid. If the worker fails to pay the mortgage he will lose his house. I really relate to physical hardship. I have observed that normal people have bad visual empathy. They are often not able to perceive how another person would see something. Many people leave out essential details when they give driving directions because they are not able to imagine what the other driver would be seeing. People have told me that they do not get lost with my directions. Normal people have emotional empathy but some of them lack empathy for sensory over sensitivity in autistic people. Some of the best therapists who work with individuals with sensory problems can empathize with these difficulties because they themselves have struggled with sound, touch, or visual oversensitivity The people who have the best sensory empathy have experienced the pain or total sense of chaos caused by faulty sensory processing.

Sometimes Consequences are Needed

The subject of consequences is controversial. Some people think that nothing aversive should ever be done. I was always testing the limits. I knew that a tantrum in school had a penalty of no TV for one day. Discipline between home and school was consistent. Mother and the teachers were a team. I would have been out of control if there had been no consequences for bad behavior. Even though I was raised in a strict household, my abilities in art were always encouraged and never taken away as a punishment. I want to emphasize that I am totally against the use of aversives such as electric shocks. The repeated use of many aversives is wrong and abusive.

Positive methods should always be used for teaching and educating, but there are some situations where a single aversive event is needed to teach the child how another person feels. Three different teachers have told me that they had students who would constantly spit on them. They had tried all of the nonaversive methods such as ignoring it or explaining why they did not like it. Then one day after the teachers had been spat on one hundred times they got fed up and spat back. The child responded by saying, “Ick, I don 't like that. ” The teacher said, “Now you know how I feel when you spit on me. ” In all three cases, the spitting stopped. Now the child really understood how it felt to the other person when he spat.

Emotional Brain Versus Thinking Brain Type

Simon Baron-Cohen of University of Cambridge in England introduced the idea of people as one of two emotional brain types. He states that people are either empathizers or systematizers. Empathizers are people who relate to other people through their emotions. Systematizers are people who are more interested in things than people. Normal people tend to be empathizers while people on the autism/Asperger 's spectrum tend to be systematizers. I scored high on Baron-Cohen 's test for being a systematizer. In the update of Chapter 1 I describe the three thinking types: visual, music and math, and verbal logic. Both emotional types of brain may have the different thinking types, but people in the autism/Asperger spectrum may have the most extreme variations of the thinking types. I hypothesize that some emotional circuits may fail to hook up and local networks in the “art ” or “math ” department may have extra connections. Brains will be highly variable depending on which “computer cables ” get connected.

5
The Ways of the World

Developing Autistic Talent

AT AGE two and a half I was enrolled in a nursery school for speech—handicapped children. It was staffed by an older, experienced speech therapist and another teacher. Each child received one-to-one work with the therapist while the teacher worked with the other five children. The teachers there knew how much to intrude gently into my world to snap me out of my daydreams and make me pay attention. Too much intrusion would cause tantrums, but without intervention there would be no progress. Autistic children will remain in their own little worlds if left to their own devices.

I would tune out, shut off my ears, and daydream. My daydreams were like Technicolor movies in my head. I would also become completely absorbed in spinning a penny or studying the wood—grain pattern on my desktop. During these times the rest of the world disappeared, but then my speech teacher would gently grab my chin to pull me back into the real world.

When I was three my mother hired a governess to take care of my younger sister and me. This woman kept us constantly occupied with games and outdoor activities and was an important part of my education and treatment. She actively participated in everything we did to encourage me to stay connected. We would make snowmen, play ball, jump rope, and go skating and sledding. When I got a little older, she painted pictures with us, which helped develop my interest in art. It is important for an autistic child to have structured activities both at home and at school. Meals were always at the same time, and we were taught good table manners. Our governess taught me at an early age to be polite, and safety rules were drilled into my head. I was taught to look both ways before I crossed the street. All kids have to learn that the street is dangerous, but autistic children need to learn everything by rote. One or two warnings won 't do.

I was enrolled in a normal kindergarten at a small elementary school. Each class had only twelve to fourteen pupils and an experienced teacher who knew how to put firm but fair limits on children to control behavior. The day before I entered kindergarten, Mother attended the class and explained to the other children that they needed to help me. This prevented teasing and created a better learning environment. I am indebted to the good teachers at that school, who ran an old-fashioned, highly structured classroom, with lots of opportunity for interesting hands-on activities.

I vividly remember learning about the solar system by drawing it on the bulletin board and taking field trips to the science museum. Going to the science museum and doing experiments in my third- and fourth—grade classrooms made science real to me. The concept of barometric pressure was easy to understand after we made barometers out of milk bottles, rubber sheeting, and drinking straws. We taped the straw onto the rubber sheeting, which covered the mouth of the milk bottle. Changes in the air pressure pushed the rubber membrane up and down and made the straw move.

My teachers also encouraged my creativity. When I was in the fifth grade I helped make many of the costumes for the school play. I was good at painting and art. Both at home and at school I was praised and encouraged to work on this.

When I started school, I was still diagnosed with brain damage. The teachers were aware of my diagnosis and were willing to work with me even though they had had no training in special education. Two years of intensive teaching prior to kindergarten had prepared me for a normal school. I was now fully verbal, and many of the more severe autistic symptoms had disappeared. When an educational program is successful the child will act less autistic. I now would play with other children and had better control of my tantrums. However, I still had problems with them, especially when I got tired or became frustrated when a teacher didn 't give me enough time to respond to a question. My mind processed information slowly, and answering a question quickly was difficult.

I was still a poor reader at age eight, when my mother tried a new approach. Every afternoon after school, I sat with her in the kitchen and she had me sound out the words in a book. After I learned the phonetic sounds and the rules, she read a paragraph out loud to me. Then I sounded out one or two words. Gradually she had me read longer and longer passages. We read from a real book that was interesting instead of a little kid 's beginning book. I learned well with phonics, because I understood spoken language. It took me a long time to learn to read silently, though. Saying the words out loud helped me to keep the sequence organized. I also used to tell myself stories at night. Saying them out loud gave each story a sequence, which made them seem more real. Even in high school I would discuss philosophical concepts out loud with myself.

As I grew older, the people who were of the greatest assistance were always the more creative, unconventional types. Psychiatrists and psychologists were of little help. They were too busy trying to psychoanalyze me and discover my deep dark psychological problems. One psychiatrist thought if he could find my “psychic injury, ” I would be cured. The high school psychologist wanted to stamp out my fixations on things like doors instead of trying to understand them and use them to stimulate learning.

It was Mr. Carlock, one of my science teachers, who became my most important mentor in high school. After I was thrown out of regular high school, my parents enrolled me in a small boarding school for gifted students with emotional problems. Even though I had scored 137 on the Wechsler IQ test when I was twelve, I was totally bored with schoolwork, and I continued to get lousy grades. The other teachers and professionals at the school wanted to discourage my weird interests and make me more normal, but Mr. Carlock took my interests and used them as motivators for doing schoolwork. When I talked about visual symbols such as doors, he gave me philosophy books.

Likewise, the psychologist and psychiatrist wanted me to get rid of my squeeze machine, but Mr. Carlock defended it and went a step further toward helping me direct my interests and energies. He told me that if I wanted to find out why it relaxed me, I had to learn science. If I studied hard enough to get into college, I would be able to learn why pressure had a relaxing effect. Instead of taking my weird device away, he used it to motivate me to study, get good grades, and go to college.

Mr. Carlock then introduced me to the scientific indexes, such as the
Psychological Abstracts
and the
Index Medicus
. Real scientists, I learned, do not use the
World Book Encyclopedia
. Through the indexes I could find the world 's scientific literature. In the mid-sixties there were no computerized scientific indexes. We didn 't even have photocopy machines in the public library. Each entry from an index had to be copied into a notebook by hand. Searching the scientific literature was real work in those days. Mr. Car-lock took me to the library and taught me how to do this and take the first step toward becoming a scientist. These were the books the real scientists used.

Mr. Carlock 's training served me well. Later in life, when anxiety attacks were tearing me apart, I was able to research what medication I needed in the library. Through the
Index Medicus
I found the answers.

Many children with autism become fixated on various subjects. Some teachers make the mistake of trying to stamp out the fixation. Instead, they should broaden it and channel it into constructive activities. For example, if a child becomes infatuated with boats, then use boats to motivate him to read and do math. Read books about boats and do arithmetic problems on calculating boat speed. Fixations provide great motivation. Leo Kanner stated that the path to success for some people with autism was to channel their fixation into a career. One of his most successful patients became a bank teller. He was raised by a farm family who found goals for his number fixation. To motivate him to work in the fields, they let him count the rows of corn while the corn was being harvested.

Dr. Kanner also noted that an autistic person 's fixations can be their way to achieve some social life and friends. Today, many people with autism become fascinated with computers and become very good at programming. An interest in computers can provide social contacts with other computer people. The Internet, the worldwide computer network, is wonderful for such people. Problems that autistic people have with eye contact and awkward gestures are not visible on the Internet, and typewritten messages avoid many of the social problems of face-to-face contact. The Internet may be the best thing yet for improving an autistic person 's social life. Tom McKean said when he was a college student that computers were a godsend because he could communicate with other people and not have to concentrate on trying to talk normally.

Teachers need to help autistic children develop their talents. I think there is too much emphasis on deficits and not enough emphasis on developing abilities. For example, ability in art often shows up at an early age. At meetings, parents, teachers, and people with autism have given me astonishing drawings by very young children. Autistic children as young as seven will sometimes draw in three-dimensional perspective. One time I visited a school where a twenty-year-old autistic man was drawing beautiful airport pictures on notebook paper. Nobody was working with him to develop this talent. He should have been taking courses in drafting and computer drawing.

Tom McKean became frustrated during a college computer programming course because the professor flunked him for finding a better way to write a program. My guess is that the professor may have been offended by Tom 's direct manner, not understanding that being direct to the point of rudeness sometimes is a characteristic of autism. Tom would walk up to the blackboard and erase and correct his professor 's example. In his book
Soon Will Come the Light
, Tom wrote, “Look, if we did it this way instead, we could save four or five lines of code. If I was looking for a job as a programmer, I would not have been hired if I used the code he [the professor] insisted on. ” Tom was frustrated and confused when he failed the course. A more creative professor would have challenged him with more interesting and difficult program writing.

Teenagers and adults with autism need to build on their strengths and use their interests. They should be encouraged to develop abilities in fields such as computer programming, engine repair, and graphic arts. (Computer programming is also an excellent field because social eccentricity is tolerated.) Autistics also need mentors to explain the ways of the world. I have helped many autistic adults by explaining to them that they think differently from other people. It makes it easier to figure out what and why things are going on when one learns that other people 's actual thinking processes are different. Video cameras and tape recorders can be very useful in teaching social interactions. When I look at videotapes of some of my old lectures, I can see the things I did wrong, such as using odd voice patterns. Teaching a person with autism the social graces is like coaching an actor for a play. Every step has to be planned. This is one reason that Mr.Carlock did more for me than teach me science. He spent hours giving me encouragement when I became dejected by all the teasing by classmates. Mr. Carlock 's science lab was a refuge from a world I did not understand.

When I became interested in something, I rode the subject to death. I would talk about the same thing over and over again. It was like playing a favorite song over and over on the stereo. Teenagers do this all the time, and nobody thinks that it is odd. But autism exaggerates normal behavior to a point that is beyond most people 's capacity for understanding. For example, many people thought the way I perseverated on my door symbols was weird and tried to get me to get rid of them. It took someone like Mr. Carlock to help me channel such fixations.

College and Graduate School

Before I entered college, my mother informed the administration of my problems. The school was close to my old high school and I was still able to see Mr. Carlock on weekends. This was very important for my success. He provided needed support and encouragement while I adapted to life in college. I might not have been able to make it without him.

There were two kinds of college courses: easy ones, like biology, history, and English, and impossible ones, like math and French. Mr. Dion, the math teacher, spent hours with me after each class. Almost every day I went to his office and reviewed the entire day 's lecture. I also had to spend hours with a tutor to get through French. For moral support there was Mrs. Eastbrook, the assistant dean 's wife. She was another one of the unconventional people who helped me. She had wild hair and wore long johns under her skirt. When I got lonely or down in the dumps, I went over to her house and she gave me much-needed encouragement.

College was a confusing place, and I strove to use visual analogies to understand the rules of collegiate society. When I got into college, I made new analogies to augment the simple ideas that I had come up with in boarding school to stay out of trouble. There I had quickly learned which rules I really had to follow and which rules I could bend through careful observation and logic. I developed a simple classification system for rules, which I called “sins of the system. ” A rule designated as a sin of the system was very important, and breaking it would result in severe loss of privileges or expulsion. Students got into serious trouble for smoking and having sex. If a student could be totally trusted not to engage in these two activities, she could break some of the minor rules without any consequences. I designated smoking and sex as sins of the system. Once the staff realized that I would not run off into the bushes and have sex I was never punished for going out in the woods without a staff member. I was never given special permission to go hiking by myself, but on the other hand, I learned that the staff would make no attempt to stop me. I figured out that the teachers and houseparents were much more concerned about smoking and sex, and I learned how to stay out of trouble.