(p. 71) Stopping the Constant Stress: A Personal Account
Puberty arrived when I was 14 years old, and nerve attacks accompanied it. I started living in a constant state of stage fright, the way you feel before your first big job interview or public speaking engagement. But in my case, the anxiety seized me for no good reason. Many people with autism find that the symptoms worsen at puberty. When my anxiety went away, it was replaced with bouts of colitis or terrible headaches. My nervous system was constantly under stress. I was like a frightened animal, and every little thing triggered a fear reaction.
For the next 20 years, I tried to find psychological reasons for the panic attacks. I now realize that because of the autism, my nervous system was in a state of hypervigilance. Any minor disturbance could cause an intense reaction. I was like a high-strung cow or horse that goes into instant antipredator mode when it is surprised by an unexpected disturbance. As I got older, my anxiety attacks got worse, and even minor stresses triggered colitis or panic. By the time I was 30, these attacks were destroying me and causing serious stress-related health problems. The intensification of my symptoms over time was similar to the well-documented worsening of symptoms that occurs in people with manic depression and that is common in other people with autism.
In my younger years, anxiety fueled my fixations and acted as a motivator. I probably never would have started my business or developed my interest in animal welfare if 1 had not been driven by the heightened arousal of my nervous system. At some point I realized that there were two ways to fight the nerves—either by fighting fire with fire or by retreating and becoming a house-bound agoraphobic who was afraid to go to the shopping center. In high school and college, I treated panic attacks as a kind of omen signifying that it was now time (p. 72) to reach the next door and take the next step in my life. I thought that if I faced my fears, the panic attacks would go away. Milder anxiety attacks propelled me to write pages and pages in my diary, though the more severe ones paralyzed me and made me not want to leave die house for fear of having an attack in public.
In my late 20s, these severe attacks became more and more frequent. The jet engine was blowing up, exploding instead of propelling me. My visual mind was going into overdrive since I was desperate to find a psychological explanation for the worsening attacks. I even started classifying different anxiety symptoms as having special meanings. I thought that diffuse anxiety was more psychologically regressive than anxiety-induced colitis because when I was sick from colitis, I did not feel nervous and fearful. While I was having bouts of colitis that lasted for months, I lost my fear of seeking out new things. The hyperaroused state of my nervous system seemed to manifest itself in different ways. The most severe anxiety left me house bound, whereas during colitis attacks I became fearless and would go out to conquer the world, following my internal map of visual symbols.
The more nervous I became, me more I would fixate, until the jet engine of anxiety started tearing me up. Visual symbols were not working, so I turned to medical science. I went to every doctor in town, but they found no physical cause for the headaches that accompanied my anxiety. I even went for a brain scan, but it did not provide an explanation either. Medical science was failing me, and I just took each day at a time and tried to get through it. My career was going reasonably well. I had just been elected as the first woman board member of the American Society of Agricultural Consultants. But I could barely function. I remember one horrible day when I came home sweating and in a total state of fear for absolutely no reason. I sat on the couch with my heart pounding and thought, “Will the nerves ever go away?” Then someone suggested that I try having a quiet period every afternoon. So, from four o-clock to five o’clock every afternoon, I watched Star Trek. This routine did help to calm my anxiety.
When I turned 34 years old, I needed an operation to remove a skin cancer from my eyelid. Inflammation from the procedure triggered the most terrifying and explosive attacks I had ever experienced. I woke up in the middle of the night with my heart pounding. My fixation had suddenly switched from cattle and finding me meaning of my life to a fear of going blind. For the next week I woke up every night at 3:00 a.m. and had nightmares about not being able to see. Headaches, colitis, and plain old anxiety were now replaced with an overwhelming fear of blindness. To a visual thinker, blindness is a fate worse than death. I knew I had to do something drastic to prevent a full-scale nervous breakdown. It was then that I turned to biochemistry to help me with the anxiety disorder I had lived with my whole adult life.
Before the eye operation, I was able to keep my panic attacks under control with vigorous exercise and the use of my squeeze machine. With this device I would apply pressure to my body. I invented the squeeze machine when I was (p. 73) 18 years old. After visiting my aunt's ranch in Arizona, I got the idea of building such a device, patterned after the cattle squeeze chute I first saw there. When I watched cattle being put in the squeeze chute for their vaccinations, I noticed that some of them relaxed when they were pressed between the side panels. I guess I had made my first connection between those cows and myself, because a few days later, after I had a big panic attack, I just got inside the squeeze chute at the ranch. Since puberty, I had experienced constant fear and anxiety coupled with severe panic attacks, which occurred at intervals of anywhere from a few weeks to several months. My life was based on avoiding situations that might trigger an attack.
I asked Aunt Ann to press the squeeze sides against me and to close the head restraint bars around my neck. I hoped it would calm my anxiety. At first there were a few moments of sheer panic as I stiffened up and tried to pull away from the pressure, but I couldn't get away because my head was locked in. Five seconds later, I felt a wave of relaxation and about 30 minutes later, I asked Aunt Ann to release me. For about an hour afterward I felt very calm and serene. My constant anxiety had diminished. This was the first time I ever felt really comfortable in my own skin. Ann went along with my odd request to get in the cattle chute. She recognized that my mind worked in visual symbols, and she figured that the squeeze chute was an important part of my journey in the visual symbol world. I don't think she realized at the time that it was the pressure from the chute that relaxed me.
I copied the design and built the first human squeeze machine out of plywood panels when I returned to school. Entering the machine on hands and knees, I applied pressure to both sides of my body. The headmaster of my school and the school psychologist thought my machine was very weird and wanted to take it away. Professionals in those days had no understanding of autistic sensory problems; they still believed that autism was caused by psychological factors. They wanted to get rid of my machine and alerted my mother, who became very concerned. Like the professionals, she had no idea that my attraction to pressure was biological.
Over the years, I improved the design of my machine. The most advanced version has two soft foam-padded panels that apply pressure along each side of my body and a padded opening that closed around my neck. I control the amount of pressure by pushing an air valve lever that pulls the two panels tight against my body. I can precisely control how much pressure my body receives. Slowly increasing and decreasing the pressure is the most relaxing. Using the squeeze machine on a daily basis calms my anxiety and helps me to unwind.
When I was young I wanted very intense pressure, almost to the point of pain. This machine provided great relief. The earliest version of the squeeze machine, with its hard wood sides, applied greater amounts of pressure than later versions with soft padded sides. As I learned to tolerate the pressure, I modified the machine to make it softer and gentler.
(p. 74) Because many people were trying to convince me to give up the machine, I had many ambivalent feelings about using it. I was torn between two opposing forces: I wanted to please my mother and the school authorities by giving the machine up, but my body craved its calming effect. To make matters worse, I had no idea at that time that my sensory experiences were different from those of other people. Since then, I’ve learned that other people with autism also crave pressure and have devised methods to apply it to their bodies. Tom McKean (1994) wrote in his book, Soon Will Come the Light, that he feels a low-intensity pain throughout his body, which is relieved by pressure.
Six months before my eye surgery I read an article titled “The Promise of Biological Psychiatry” in the February 1981 issue of Psychology Today. The authors described the use of antidepressant drugs to control anxiety. Using the library skills that my teacher had taught me, I found an important journal article by Sheehan, Ballenger and Jacobsen (1980) at Harvard Medical School, with the impressive title, ‘Treatment of Endogenous Anxiety with Phobic, Hysterical and Hypochondriacal Symptoms,” published in the Archives of General Psychiatry. This paper described research with the drug imipramine (brand name Tofranil) and phenelzine (brand name Nardil) for controlling anxiety. When I read the list of symptoms, I knew I had found the Holy Grail. More than 90% of Dr. Sheehan's patients had symptoms of “spells of terror or panic,” were “suddenly scared for no reason,” or had “nervousness or shaking inside.” Seventy percent had pounding hearts or a lump in the throat. There was a long list of 27 symptoms, and I had many of them.
Even though I suspected that the medications described in the article were the answers to my problems, I put off getting them. I did not like the idea of taking medication. But the attacks following my eye surgery finally did me in. I took the paper out of my files and read it over and over. Like me, the patients in the study had failed to respond positively to tranquilizers such as Valium and Librium. I marked my symptoms on the symptom list, and I talked my doctor into giving me a 50-mg dose of Tofranil per day. The effects were quick and dramatic. Within two days, I felt better.
I had a great survival instinct; otherwise I would not have made it. The instinct to survive, along with my interest in science, helped me find treatments such as the antidepressant and the squeeze machine. My technical education also helped me. To get my degrees in psychology and animal science, I had taken veterinary and physiology courses. Reading complex medical articles was like reading a novel, and my training in library research taught me that the library was the place to look for answers.
(p. 75) My body was no longer in a state of hyperarousal after I took Tofranil. Before taking the drug, I had been in a constant state of physiological alertness, as if ready to flee from nonexistent predators. Many nonautistic people who are depressed and anxious also have a nervous system that is biologically prepared for flight. Small stresses of daily life that are insignificant to most people trigger anxiety attacks. Research is showing that antidepressant drugs such as Tofranil are helpful because they mimic adaptation to stress. After I had been on Tofranil for three years, I switched to desipramine (Norpramin), a chemical cousin of Tofranil, which was slightly more effective and had fewer side effects.
Taking these drugs caused me to look at myself in a whole new light. I stopped writing in my diary, and I found that my business started going much better because I was no longer in a driven frenzy. I stopped creating an elaborate visual symbolic world, because I no longer needed it to explain my constant anxiety. When I go back and read my diary, I miss the passion, but I never want to go back to those days. In the days before I took medication, anxiety drove my fixations. Interestingly, fixations I had before taking the medications have made a deep imprint on my emotions. Projects I created before taking these drugs still arouse more passion than those I started afterward do.
The nerve attacks returned after I had been on Tofranil for three months, but they were less severe than before. I figured out that my nerve attacks came in cycles, so I resisted the urge to increase the dose of Tofranil. I also knew from past experience that the attacks would eventually subside and that they tended to get worse in the spring and fall. The first relapse occurred during a new equipment startup at a meat plant. Stress can trigger a relapse. I just toughed out the nerve attack, and it finally went away. It took willpower to stay on the same dose when the relapses came, but the 50-mg dose I take has been working all these years. I have taken antidepressants for 13 years, and now I’m a true believer in biochemical intervention.
Taking the medication is like adjusting the idle screw on an old-fashioned engine. Before I took Tofranil, my “engine” was racing all the time, doing so many revolutions per minute that it was tearing itself up. Now my nervous system is running at 55 mph instead of 200 mph, as it used to. I still have cycles of nervousness, but they seem to go between 55 and 90 mph instead of between 150 and 200 mph. Before I took the medication, using the squeeze machine and intensive exercise calmed down my anxiety, but as I got older my nervous system became more difficult to tune. Eventually, using the squeeze machine to calm my nerves was like attempting to stop a blast furnace by spitting on it. At that point, medication saved me.
When I think back to the nerve attacks in the days before I took medication, I realize that I often had periods of several months when my anxiety was quite low, and then suddenly a panic attack would flip a metabolic switch, and my nerves would go from a tolerable 75 mph to a horrible 200 mph. It would then take (p. 76) several months for them to subside to 75 mph. It was like switching the speed on an industrial strength fan by pushing a button. My nervous system instantly jumped from a brisk breeze to a roaring hurricane. Today, it never gets beyond the brisk breeze level.
Panic attacks and anxiety occur in both people with autism and normal people. About half of high-functioning autistic adults have severe anxiety and panic. Lindsey Perkins, an autistic mathematician, states that when he tries to communicate with people, he begins to gag and feel panicky. Jack Gorman and his associates at Columbia University describe a process called kindling, which may explain such sudden increases in anxiety. In kindling, repeated stimulation of neurons in the limbic system of the brain, which contains the emotion centers, affects the neurons and makes them more sensitive. It's like starting a fire in kindling wood under the big logs in the fireplace. Small kindling fires often fail to ignite the logs, but then suddenly the logs catch on fire. When kindling occurred in my nervous system, I was on hair trigger. Any little stress caused a massive fear reaction (Gorman, Kent, Sullivan, & Coplan, 2000).
Even though I felt relief immediately after I started the drug, my behavior changed slowly. There were obvious improvements that everybody noticed immediately, but over the years there have been more subtle gains. For instance, many people who have attended my lectures for some time have noticed that they keep getting smoother and better. An old friend, whom I hadn't seen in seven years, since before I started taking medication, informed me that I now walked with my back straight rather than hunched up. I had stopped walking with a limp and seemed like a completely different person to her. I knew that I had sometimes hunched, but I never realized that I used to sound like 1 was always trying to catch my breath or that I was constantly swallowing. My eye contact had also improved, and I no longer had a shifty eye. People report that they now have a more personal feeling when they talk to me.
I had another rude encounter with me effects of biochemistry after I had a hysterectomy in the summer of 1992. An ovary was removed, which greatly reduced the estrogen levels in my body. Without estrogen, I felt irritable and my joints ached. I was horrified to discover that the soothing, comforting effect of the squeeze machine had disappeared; the machine no longer had any effect. My feelings of empathy and gentleness were gone, and I was turning into a cranky computer. I started taking low doses of estrogen supplements. This worked very well for about a year, and then the nerve and colitis attacks returned as they had been in the days before I started taking medication. I had not had a colitis attack for more than 10 years. The panic was like the hypervigilance I had felt before. A dog barking in the middle of the night caused my heart to race.
Remembering my pre-Tofranil days, I realized that I was almost never nervous when estrogen levels were at the lowest point, during menstruation, and I figured out that I had been taking too high a dose of estrogen. When I stopped taking the estrogen pills, the anxiety attacks went away. Now I fine-tune my (p. 77) estrogen intake like a diabetic adjusting insulin. I take just enough so I can have gentle feelings of empathy, but not enough to drive my nervous system into hypersensitivity and anxiety attacks. I think the reason my panic attacks started at puberty was that estrogen sensitized my nervous system. I also speculate that some of the unexplained cycles of nerves were caused by natural fluctuations in estrogen. Now that I am closely regulating my estrogen levels, the nervous cycles are gone.
Manipulating my biochemistry has not made me a completely different person, but it has been somewhat unsettling to my idea of who and what I am to be able to adjust my emotions as if I was tuning up a car. However, I’m deeply grateful that there is an available solution and that I discovered better living through chemistry before my overactive nervous system destroyed me. Most of my problems were not caused by external stresses such as a final exam or getting fired from a job. I am one of those people born with a nervous system that operates in a perpetual state of fear and anxiety. Most people do not get into this state unless they go through extremely severe trauma, such as child abuse, an airplane crash, or wartime stress. I used to think it was normal to feel nervous all the time, and it was a revelation to find out that most people do not have constant anxiety attacks.
When I was looking for medications in 1981, newer medications such as Prozac were not available. Both practical experience and numerous scientific studies show that the serotonin reuptake inhibitors (SSRI) are effective for people with autism. I was lucky that Tofranil worked for me, but a wider range of people will benefit from medications such as Prozac, Zoloft, Paxil, and Luvox. Two friends of mine were totally stressed out from panic attacks and anxiety. They have found that Prozac has really improved their lives. SSRIs are especially helpful in high-functioning autism.
One must be careful about the dosage of an SSRI. Small doses will work and too much will cause insomnia, agitation, and aggression. Some people with autism need only one quarter of the normal starting dose listed in the Physicians’ Desk Reference (2000), but doctors sometimes make the mistake of prescribing too high a dose. I have heard many parents tell about terrible experiences with too much of an SSRI; if the person with autism starts to have insomnia or feels agitated, the dose must be reduced.
After I had a hysterectomy at the age of 46,1 learned that the anxiety and panic attack cycles were due to hormones. I have been able to further control my anxiety by carefully regulating my intake of estrogen supplements and progesterone (p. 78) supplements. If I take estrogen alone I get nervous, but if I take estrogen and progesterone together, I remain calm. Today I still take Norpramin (desipramine), which works slightly better than Tofranil. Since I am stable on this old-fashioned medication, I was afraid to change it. I have found that my anxiety levels stay lowest if I take a very low dose of estrogen and progesterone for three weeks and then take a hormone holiday for one week. If I totally stop taking hormones, I get anxious. I have never stopped taking the Norpramin.
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 when I jumped off the diving board. When one of my scientific papers is accepted for publication, I feel die 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 because of the hormone changes associated with adolescence. 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 (1994) and Therese Joliffe (1992) 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. It is common for people with autism to report that they live in a world of daydreaming and fear. 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 (p. 79) 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 taking for the last 23 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 1 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 fee! 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 (1980) succinctly summarized 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 (p. 203). As far as I can figure out, complex emotion occurs when a person feels two opposite emotions at once. American author Mark Twain (1977) wrote that “the secret source of humor is not joy but sorrow” (p. 119), and Virginia Woolf (1997) wrote, “The beauty of the world has two edges, one of laughter, one of anguish, cutting the heart asunder” (p. 21). 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 (1994) 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 kept discovering that slight changes in the way I manipulated the control lever affected how it felt. When I slowly increased the pressure, I made very small variations in the rate and timing of the increase. It was like a language of pressure, and I kept finding new variations with slightly different sensations. For me, this was the (p. 80) 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. I did not know that people could read emotion in another person's eyes. I only learned about this five years ago when I read about it in Simon Baron-Cohen's book, titled Mind Blindness (1995).
Today, the combination of the Norpramin and the two hormones taken in a three-week-on and one-week-off cycle is controlling the stress. Sometimes I fine-tune myself by changing the hormone schedule slightly. I have also found that doing IS minutes of jogging in place is really helpful. This is an easy exercise that I can do when I travel. Vigorous aerobic exercise is very important.
I am always learning and improving. A person with autism never really grows up. Every day I learn more about how to get along with other people. My job and career make life worth living. Intellectual complexity has replaced emotional complexity in my life. I think it is very important for people with autism and Asperger's syndrome to have intellectually satisfying work. Young people with autism and Asperger’syndrome must be encouraged and mentored to develop their special talents into employable skills. I worked hard to make myself an expert in a specialized field. Developing expertise at a specialized skill or field will help to make up for social deficits. People respect and value talent. I am concerned that teachers and parents may get so concerned about social skills that the intellectual life of a young person with autism may be neglected. Neglecting intellectual development would be a great tragedy. I would have a very empty life if I did not have satisfying work, which has given my life meaning.
Parts of this chapter have been published in Thinking in Pictures, T. Grandin, 1996 (NewYork: Vintage Press; copyright 1995 Temple Grandin).
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