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.
Medications for Autism
Today there are many new drug treatments that can be really helpful to people with autism. These medications are especially useful for problems which occur after puberty. Unfortunately, many medical professionals do not know how to prescribe
them properly. At autism meetings I have heard countless horror stories of how giving the wrong drug to an autistic with epilepsy can cause grand mal seizures or how doctors make zombies out of people by giving them enough neuroleptics to put a horse to sleep. Parents have also told me about serious side effects; one autistic adult went berserk and wrecked a room because of an excessive dose of an antidepressant, and another slept all day because he was put on a cocktail of high doses of six different drugs.
The proper use of medications is part of a good autism program, but it is not a substitute for the proper educational or social programs. Medication can reduce anxiety, but it will not inspire a person the way a good teacher can. It seems that some people with autism are given so many powerful drugs that they act as a chemical straitjacket. An effective medication should work at a reasonable dose, and it should have a fairly dramatic obvious effect. If a drug has a negligible effect, it's probably not worth taking. Likewise, medications that work should be used and drugs that don't work should be discontinued. Since autism has such a wide range of symptoms, a drug that works for one person may be worthless for somebody else.
Research studies show that new antidepressant drugs such as clomipramine (Anafranil) and fluoxetine (Prozac) are often effective for people with autism. These are usually better first choices than the medicine I take. They have the added benefit of reducing obsessive-compulsive disorders and the racing thoughts that often afflict people with autism. Anafranil, a close chemical cousin of Norpramin and Tofranil, also boosts brain levels of serotonin, a substance that calms down the nervous system. Anafranil, Tofranil, and Norpramin must be used with extreme caution in persons with EEG abnormalities, because they sensitize the brain to epileptic seizures. Other antidepressants, such as Prozac, are safer for epileptics. All autistics must consult a physician who is knowledgeable in the use of medications for people with autism before they use any prescription medication.
Both Dr. Paul Hardy, an autism specialist in Boston, and Dr. John Ratey at the Harvard Medical School state that people with autism often require lower doses of antidepressants than nonautis-tic people. Doses that are effective for autism are often much lower than the doses used to treat depression, and those recommended in the Physicians' Desk Reference are too high for many autistics. Some only need one fourth to one third of the normal dose, although others require the full amount. Too high a dose will result in agitation, insomnia, aggression, and excitement. Dosages should be started very low and raised slowly until an effective amount is found; the dose should be stabilized at the lowest possible level. Increasing it beyond that point can have disastrous results, causing extreme aggression, touching off an epileptic seizure, or, in a few cases, triggering manic psychosis. If aggression, insomnia, or agitation occurs when the dose is increased, it must be immediately lowered. The first sign of an excessive dose is often insomnia.
This paradoxical effect may occur with all antidepressant drugs because they work on two different biochemical pathways in the brain. One pathway stimulates a person out of depression, and the other calms anxiety. Finding the right dose is a delicate balancing act, and unfortunately, many people with autism have difficulty communicating the subtle reactions they have.
At a recent Autism Society of America convention, I talked to four people who have had good results with Prozac. Prozac has received a lot of unfair bad publicity; most problems with the drug are caused by high doses. If a person starts to feel like he has drunk twenty cups of coffee, he is taking too much. Immediately lowering the dose will stop serious problems before they start. Kathy Lissner-Grant, a highly verbal, articulate person with autism, said that Prozac has really improved her life. It stopped racing obsessive thoughts, which other antidepressants had failed to stop. Twenty milligrams in the morning was effective. Two teenage autistic boys are doing well on 40 milligrams of Prozac. In some cases, the effective dose is extremely low. One twenty-six-year-old low-functioning man started socializing more after he started taking only two 20 mg capsules twice a week. Since Prozac metabolizes slowly, it is possible to prescribe low doses by giving a single 20 mg capsule every other day; Dr. Hardy reports that this works for many of his patients. A person can't skip days with other drugs, such as Tofranil and Anafranil, because they are cleared from the body quickly Discussions with people with autism and their doctors also indicate that new drugs such as paroxetine (Paxil), fluvoxamine (Luvox), and sertraline (Zoloft) are also effective.
I have taken Norpramin continuously for over ten years without a drug holiday I became scared of taking a break after reading that when some people with manic-depression resumed taking lithium after a hiatus, it was no longer effective. This occurs in some people and not in others, according to Dr. Alan C. Swann at the University of Texas Medical School, though there are no predictors as to which people will become immune to the drug. During my travels, I have observed two cases in which Anafranil and Tofranil stopped working when they were resumed after the patient had stopped taking them. The first case involved an autistic woman who had successfully graduated from college but whose endless obsessions had been wrecking her life. Anafranil had changed that. Her doctor discontinued the drug, but when her symptoms returned, the drug no longer worked for her. In another case, a woman with a brain stem injury became supersensitive to light, sound, and touch. Tofranil greatly reduced her sensitivities. She was taken off the drug, and it too no longer worked. However, this problem may only apply to certain drugs, such as the tricyclic antidepressants, and only under specific conditions. In the case of many other drugs, stopping and starting does not compromise the effectiveness.
There is much that is not known about medications for autism. I am one of the few people in whom successful use of the same dose of antidepressants has been maintained for over ten years. Reports from parents indicate that many serious side effects occur when the dose is raised after a relapse of anxiety or behavior problems after months of successful treatment. Some of these relapses will subside by themselves if the dose is not raised.
If I hadn't been able to apply my scientific approach to problems,I would never have discovered the medications that have saved my life. There is so much misinformation about using medication to treat autism because of all the varieties of the illness. For instance, if an autistic person has abnormalities on his or her EEG, it may be hazardous to take those antidepressants that can cause an epileptic seizure. In such people, other medications, including buspirone (Buspar), clonidine (Catapres), or beta-blockers such as Inderal (propranolol hydrochloride), have been helpful.
Buspar is a tranquilizer, and beta-blockers and clonidine are blood pressure medications. According to Dr. Ratey beta-blockers greatly reduce aggressive behavior. Dee Landry, a high-functioning autistic woman in Colorado, told me that beta-blockers reduced her anxiety and sensory overload. She has been successfully using them for many years. I've also met two nonverbal autistic teenagers who were saved from a fate in the back ward with beta-blockers. At puberty the boys became aggressive and started knocking holes in the walls of their house. Beta-blockers enabled them to continue to live at home. Dr. Ratey informed me that he has had good success with Buspar. When Buspar is used, the low-dose principle should be followed. When beta-blockers are used, they are given at the doses that normally control blood pressure. To prevent excessive decreases in blood pressure, the dosage must be raised very slowly. The person's blood pressure should be monitored every day to make sure it does not get too low.
Another blood pressure medication that is very useful in reducing sensory oversensitivity is clonidine. Both scientific research and reports from people with autism indicate that it has improved behavior and social interaction in both children and adults. Clonidine was the highest-ranking drug for overall improvement in behavior in a parent survey conducted by Dr. Bernard Rimland for Autism Research International. Out of 118 cases, 51 percent reported that it had a beneficial effect. If the clonidine patch is used, it should not be cut in half. One parent
reported that her child got a dangerous overdose when a cut patch got wet.
Tranquilizers such as diazepam (Valium) and alprazolam (Xanax) should be avoided if possible, according to Dr. Ratey. Other medications are better for long-term treatment. Methyl-phenidate (Ritalin) will make most people with autism much worse, but in a few known cases it has helped. Dee Landry told me that taking Ritalin has stabilized her sensory perceptions. The natural substance melatonin may help some autistic children and adults to sleep at night. Dr. Rimland's 1994 parent survey also indicated that calcium supplements were helpful in 58 percent of ninety-seven autism cases.
Each case is different. Discussions with parents, professionals, and people with autism indicate that some autistics need medications to control anxiety, panic, and obsessions, while others have mild symptoms that can be controlled with exercise and other nondrug treatments. All medications have some risk. When the decision is being made to use a medication, the risk must be weighed against the benefit.
Epileptic-like Conditions
Some autistic symptoms may be caused by epileptic-like conditions. Tiny mini-seizures that are difficult to detect on an EEG can create sensory scrambling problems, self-injurious behaviors, and outbursts of aggression. Substances that normalize electrical activity in the brain sometimes reduce autistic symptoms and improve a child's ability to understand speech.
In some cases, sudden outbursts of rage are actually frontal-lobe epilepsy. If temper tantrums or aggression appear totally out of the blue, this condition should be suspected and anticonvulsant medication might be helpful. Frontal-lobe epilepsy can be present even if an EEG test gives normal results, since it will not show up unless the person has an attack in the doctor's office.
Thinking in Pictures: My Life with Autism Page 15
