Thinking in Pictures: My Life with Autism (18 page)

6
B
ELIEVER IN
B
IOCHEMISTRY

Medications and New Treatments

PUBERTY ARRIVED when I was fourteen, 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 twenty 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 thirty, 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 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 I 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 housebound 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 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 the house for fear of having an attack in public.

In my late twenties, 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 housebound, 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, the 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, and 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 somebody suggested that I try having a quiet period every afternoon. So for one hour every day, from 4:00 to 5:00 P
.
M
.
, I watched
Star Trek
. This routine did help to calm my anxiety.

When I turned thirty-four 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 the 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.

Discovering Biochemistry

Six months prior to my eye surgery I had read an article titled “The Promise of Biological Psychiatry” in the February 1981 issue of
Psychology Today
. It described the use of antidepressant drugs to control anxiety. Using the library skills that Mr. Carlock had taught me, I found an important journal article by Dr. David Sheehan and his colleagues at the Harvard Medical School, with the big, impressive title “Treatment of Endogenous Anxiety with Phobic, Hysterical and Hypochondriacal Symptoms,” published in the January 1980 issue of
Archives of General Psychiatry
. This paper described research with the drugs 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. Over 90 percent 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 twenty-seven symptoms, and I had 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 biochemistry. 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-milligram 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 to 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 many 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.

My body was no longer in a state of hyperarousal. 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 my predrug days, 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.

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 my 50 milligrams have kept working for all these years. I have taken antidepressants for thirteen years, and now I'm a true believer in biochemistry.

Taking the medication is like adjusting the idle adjustment screw on an old-fashioned automobile 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 nerve cycles, but they seem to go between 55 and 90 mph instead of 150 and 200 mph. Before I took the medication, using the squeeze machine and heavy 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 my predrug days, 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 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. Dr. 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.

Even though I felt relief immediately after I started the drug, however, 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 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 I 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 the effects of biochemistry after I had a hysterectomy for a giant fibroid tumor in the summer of 1992. Removal of an ovary 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 old predrug days. I had not had a colitis attack for more than ten 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 estrogen intake like a diabetic adjusting insulin doses. 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. Maybe in some months my ovaries just put out more of this hormone, and that was all it took to trigger a giant nerve attack. Now that I am closely regulating my estrogen intake, the nerve cycles are gone. The amount of estrogen I have to take sometimes varies because I still have one partially functioning ovary.

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 were 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 who are 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.