Thinking in Pictures: My Life with Autism
Page 11
Tests done in many different laboratories around the world clearly indicate that people with autism have abnormal results on brain stem function tests, and that nonverbal people with severe impairments have the most abnormal results. Neurological problems occur during fetal development and are not caused by psychological factors. However, it 's possible that if a baby does not receive comforting touch, the feeling and kindness circuits in the brain shrivel up.
Autism and Animal Behavior
Zoo animals kept in barren concrete cages become bored and often develop abnormal behavior such as rocking, pacing, and weaving. Young animals placed alone in such environments become permanently damaged and exhibit strange, autistic-like behavior, becoming overly excitable and engaging in stereotypical behaviors such as self-mutilation, hyperactivity, and disturbed social relations. The effects of sensory deprivation are very bad for their nervous systems. Total rehabilitation of these animals is extremely difficult.
Animal and human studies show that restriction of sensory experiences causes the central nervous system to become hypersensitive to sound and touch. The effects of early sensory restriction are often long-lasting. Puppies reared in empty concrete kennels become very excited when they hear a noise. Their brain waves still show signs of excessive excitability six months after they are removed from the kennel and housed on a farm. The brain waves of autistic children show similar signs of excessive arousal. Further experiments with rats have illustrated the damaging effects of restricting normal sensory experiences. Trimming the whiskers on baby rats causes the parts of the brain that receive sensations from the whiskers to become oversensitive, because there are no incoming touch sensations. This abnormality is relatively permanent; the brain areas are still abnormal after the whiskers grow back. It may be that the autistic child 's abnormal sensory functioning causes his or her brain to develop secondary abnormalities because of distorted sensory input or a lack of such input. And these distortions may affect what are considered normal emotions.
The environment a young animal is raised in will affect the structural development of its brain. Research by Bill Greenough, at the University of Illinois, indicated that rearing rats in cages with toys and ladders to play with increased the number of dendrites, or nerve endings, in the visual and auditory parts of their brains. I conducted research as part of my Ph.D. dissertation that indicated that pigs engaging in abnormal rooting, owing to being raised in a barren plastic pen, grew extra dendrites in the part of the brain that received sensations from the snout. Construction of this abnormal “dendrite highway ” may explain why it is so difficult to rehabilitate zoo animals that have engaged in years of stereotypical pacing. This is why it is so important to start therapy and education when an autistic child is young, so that developing nerve endings can connect in the right places.
Autistic Emotions
Some people believe that people with autism do not have emotions. I definitely do have them, but they are more like the emotions of a child than of an adult. My childhood temper tantrums were not really expressions of emotion so much as circuit overloads. When I calmed down, the emotion was all over. When I get angry, it is like an afternoon thunderstorm; the anger is intense, but once I get over it, the emotion quickly dissipates. I become very angry when I see people abusing cattle, but if they change their behavior and stop abusing the animals, the emotion quickly passes.
Both as a child and as an adult, I have felt a happy glee. The happiness I feel when a client likes one of my projects is the same kind of glee I felt as a child when I jumped off the diving board. When one of my scientific papers is accepted for publication, I feel the same happiness I experienced one summer when I ran home to show my mother the message I had found in a wine bottle on the beach. I feel a deep satisfaction when I make use of my intellect to design a challenging project. It is the kind of satisfied feeling one gets after finishing a difficult crossword puzzle or playing a challenging game of chess or bridge; it 's not an emotional experience so much as an intellectual satisfaction.
At puberty, fear became my main emotion. When the hormones hit, my life revolved around trying to avoid a fear-inducing panic attack. Teasing from other kids was very painful, and I responded with anger. I eventually learned to control my temper, but the teasing persisted, and I would sometimes cry. Just the threat of teasing made me fearful; I was afraid to walk across the parking lot because I was afraid somebody would call me a name. Any change in my school schedule caused intense anxiety and fear of a panic attack. I worked overtime on my door symbols because I believed that I could make the fear go away if I could figure out the secrets of my psyche.
The writings of Tom McKean and Therese Joliffe indicate that fear is also a dominant emotion in their autism. Therese stated that trying to keep everything the same helped her avoid some of the terrible fear. Tony W, another man with autism, wrote in the Journal of Autism and Developmental Disorders that he lived in a world of daydreaming and fear and that he was afraid of everything. In my case the terrible fear did not begin until puberty, but for some autistic people it starts in early childhood. Sean Barron reported that he felt pure terror during the first five or six years of his life. The highly structured environment of the classroom reduced some of his fear, but he was often afraid and anxious in the hallways.
The intense fear and anxiety I used to experience has been almost eliminated by the antidepressant medication I 've been on for the last thirteen years. The elimination of most of my fears and panic attacks has also attenuated many of my emotions. The strongest feeling I have today is one of intense calm and serenity as I handle cattle and feel them relax under my care. The feeling of peacefulness and bliss does not dissipate quickly like my other emotions. It is like floating on clouds. I get a similar but milder feeling from the squeeze machine. I get great satisfaction out of doing clever things with my mind, but I don 't know what it is like to feel rapturous joy. I know I am missing something when other people swoon over a beautiful sunset. Intellectually I know it is beautiful, but I don 't feel it. The closest thing I have to joy is the excited pleasure I feel when I have solved a design problem. When I get this feeling, I just want to kick up my heels. I 'm like a calf gamboling about on a spring day.
My emotions are simpler than those of most people. I don 't know what complex emotion in a human relationship is. I only understand simple emotions, such as fear, anger, happiness, and sadness. I cry during sad movies, and sometimes I cry when I see something that really moves me. But complex emotional relationships are beyond my comprehension. I don 't understand how a person can love someone one minute and then want to kill him in a jealous rage the next. I don 't understand being happy and sad at the same time. Donna Williams succinctly summarizes autistic emotions in Nobody Nowhere: “I believe that autism results when some sort of mechanism that controls emotions does not function properly, leaving an otherwise relatively normal body and mind unable to express themselves with the depth that they would otherwise be capable of. ” As far as I can figure out, complex emotion occurs when a person feels two opposite emotions at once. Samuel Clemens, the author of Tom Sawyer, wrote that “the secret source of humor is not joy but sorrow, ” and Virginia Woolf wrote, “The beauty of the world has two edges, one of laughter, one of anguish, cutting the heart asunder. ” I can understand these ideas, but I don 't experience emotion this way
I am like the lady referred to as S. M. in a recent paper by Antonio Damasio in Nature. She has a damaged amygdala. This part of the brain is immature in autism. S. M. has difficulty judging the intentions of others, and she makes poor social judgments. She is unable to recognize subtle changes in facial expression, which is common in people with autism. In developing many varied, complex ways to operate the squeeze machine on myself, I keep discovering that slight changes in the way I manipulate the control lever affect how it feels. When I slowly increase the pressure, I make very small variations in the rate and timing of the increase. It is like a language of pressure,
and I keep finding new variations with slightly different sensations. For me, this is the tactile equivalent of a complex emotion and this has helped me to understand complexity of feelings.
I have learned how to understand simple emotional relationships that occur with clients. These relationships are usually straightforward; however, emotional nuances are still incomprehensible to me, and I value concrete evidence of accomplishment and appreciation. It pleases me to look at my collection of hats that clients have given me, because they are physical evidence that the clients liked my work. I am motivated by tangible accomplishment, and I want to make a positive contribution to society.
I still have difficulty understanding and having a relationship with people whose primary motivation in life is governed by complex emotions, as my actions are guided by intellect. This has caused friction between me and some family members when I have failed to read subtle emotional cues. For instance, it was difficult for my younger sister to have a weird sister. She felt she always had to tiptoe around me. I had no idea that she felt this way until years later, when she told me about her childhood feelings toward me. Motivated by love, my mother worked with me and kept me out of institutions. Yet sometimes she feels that I don 't love her.
She is a person for whom emotional relationships are more important than intellect and logic. It pains her that I kicked like a wild animal when I was a baby and that I had to use the squeeze machine to get the feeling of love and kindness. The irony is that if I had given up the machine, I would have been a cold, hard rock. Without the machine, I would have had no kind feelings toward her. I had to feel physical comfort in order to feel love. Unfortunately, it is difficult for my mother and other highly emotional people to understand that people with autism think differently. For her, it is like dealing with somebody from another planet. I relate better to scientists and engineers, who are less motivated by emotion.
At a conference a man with autism told me that he feels only three emotions, fear, sadness, and anger. He has no joy. He also has problems with the intensity of his emotions, which both fluctuate and get mixed up, similar to sensory jumbling. My emotions don 't get mixed up, but they are reduced and simplified in some areas. The emotional jumbling described by this man may be like the sudden emotional changes that normally occur in two-year-old children. They can be laughing one minute and having a tantrum the next. The tendency to shift emotional states rapidly often occurs in autistic children at a later age, whereas older autistic children may have the emotional patterns of a younger child.
During the last couple of years, I have become more aware of a kind of electricity that goes on between people which is much subtler than overt anger, happiness, or fear. I have observed that when several people are together and having a good time, their speech and laughter follow a rhythm. They will all laugh together and then talk quietly until the next laughing cycle. I have always had a hard time fitting in with this rhythm, and I usually interrupt conversations without realizing my mistake. The problem is that I can 't follow the rhythm. Twenty years ago, Dr. Condon, a Boston physician, observed that babies with autism and other developmental disorders failed to move in synchrony with adult speech. Normal infants will tune into adult speech and get in synch with it.
The work I do is emotionally difficult for many people, and I am often asked how I can care about animals and be involved in slaughtering them. Perhaps because I am less emotional than other people, it is easier for me to face the idea of death. I live each day as if I will die tomorrow. This motivates me to accomplish many worthwhile things, because I have learned not to fear death and have accepted my own mortality. This has enabled me to look at slaughtering objectively and perceive it the way the cattle do. However, I am not just an objective, unfeeling observer; I have a sensory empathy for the cattle. When they remain calm I feel calm, and when something goes wrong that causes pain, I also feel their pain. I tune in to what the actual sensations are like to the cattle rather than having the idea of death rile up my emotions. My goal is to reduce suffering and improve the way farm animals are treated.
People with autism are capable of forming very strong emotional bonds. Hans Asperger, the German doctor after whom the syndrome is named, states that the commonly held assumption of poverty of emotion in autism is inaccurate. However, my strong emotional bonds are tied up with places more than people. Sometimes I think my emotional life may appear more similar to those of animals than humans, because my feelings are simpler and more overt, and like cattle, I have emotional memories that are place-specific. For instance, I am not aware of a subconscious full of memories that are too painful to think about, and my emotional memory is very weak. It is highly doubtful that cattle become emotionally aroused when they think about a cowboy who whipped them, but they will have a measurable fear response, such as increased heart rate or stress hormone release, when they see that particular cowboy or return to the place where they were whipped. They often associate danger with a specific place. People with autism also have place- or object-specific memories. Going back to the place where something good happened or looking at an object associated with good feelings helps us reexperience the pleasure. Just thinking about it is not enough.
I have emotional reactions to places where I 've stayed for a number of days or weeks while working on designing a livestock system. One of my clients told me that I fussed over a project for two weeks like a mother with a new baby. Places where I invest a lot of time become emotionally special. When I return to one of these spots, I am often overwhelmed with fear as I approach. I panic, thinking that I will be denied entry to my special place. Even though I know it 's irrational, I always survey each place I work in to make sure I can get back in. Large meat-packing plants have security guards, but in almost every plant I have figured out how to evade security, just in case it becomes one of my special places and I need to get back in. Driving by, I will see every hole in the fence and every unlocked gate and imprint them in my memory forever. My fear of blocked passages feels very primal, as though I were an animal that has been trapped.
For me, finding these holes and gaps is similar to the way a wary animal surveys new territory to make sure it has safe escape routes and passages, or crosses an open plain that may be full of predators. Will the people try to stop me? Some of the surveying is automatic and unconscious. I'll find the unlocked gate even when I am not looking for it. I can 't help but see it. And when I spot an opening, I get a rush of happy excitement. Finding all the holes in the fence also reduces fear. I know I am emotionally safe if I can get through the fence. My fear of blocked passages is one of the few emotions that is so great that it 's not fully suppressed by my antidepressant medication.
I had similar fearful reactions when I approached my symbolic doors. I was partly afraid that the door would be locked, like the blocked burrow of a tunneling animal. It was as if an antipredator system deep in my brain was activated. Basic instincts that we share with animals may be triggered by certain stimuli. This idea has been suggested by respected scientists such as Carl Sagan in his book The Dragons of Eden and Melvin Konner in The Tangled Wing. Judith Rapoport suggests in The Boy Who Couldn 't Stop Washing that obsessive-compulsive disorders, where people wash their hands for hours or repeatedly check whether the stove is off, may be the result of an activation of old animal instincts for safety and grooming.
The fear of blocked passages persisted in both my visual symbolic world of doors and in the real world long after I stopped using door symbols. In my early days I would find the doors that opened up to the roofs of the highest buildings on the school campus. From a high vantage point I could survey the danger that lurked in the next stage of my life. Emotionally I was like an animal surveying the plains for lions, but symbolically the high place signified striving to find the meaning of life. My intellect was trying to make sense of the world, but it was being driven by an engine of animal fears.
Nearly thirty years ago, when I was navigating my visual symbolic wo
rld of doors, I recognized that fear was my great motivator. At that time I didn 't realize that other people experience other major emotions. Since fear was my major emotion, it spilled over into all events that had any emotional significance. The following diary entry shows very clearly how I attempted to deal with fear in my symbolic world.
October 4, 1968
I opened the little door and went through tonight. To lift up the door and see the wide expanse of the moonlight roof before me. I have put all my fears anxieties about other people on the door. Using the trap door is risky because if it were sealed shut I would have no emotional outlet. Intellectually the door is just a symbol but on the emotional level the physical act of opening the door brings on the fears. The act of going through is my overcoming my fears and anxiety towards other people.
The intellectual side of me always knew that making changes in my life would be a challenge, and I deliberately chose symbolic doors to help me get through after the first door almost magically appeared. Sometimes I had massive activation of my sympathetic nervous system — the system that enables an animal or person to flee from danger — when I went through a door. It was like facing a lion. My heart would race and I would sweat profusely. These reactions are now controlled with antidepressant drugs. In conjunction with vast amounts of stored information in my memory, the drugs have enabled me to leave the visual symbolic world behind and venture out into the so-called real world.