Thinking in pictures

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.

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.

Some of the people affected respond well to vitamin B6 and magnesium or dimethylglycine (DMG), according to Dr. Rim-land. Studies in France have shown that these supplements improve behavior and help normalize brain electrical activity in hospitalized patients with autism. They appear to be most effective for people who have epileptic-like symptoms, such as sudden outbursts of rage or laughing one minute and crying the next. They have also been effective in young children who start to develop normal language and then lose their ability to speak and understand speech.

In severely impaired nonverbal children, the use of anticonvulsants early in life may improve speech by reducing auditory processing problems that make understanding speech nearly impossible. Parents have reported in a few cases that vitamin B6 and magnesium supplements improved speech. New medications for epilepsy are a very promising area of research. A new epilepsy drug called felbamate (Felbatol) has recently been cleared by the Food and Drug Administration. This drug has helped two young children with severe impairments. One had no ability to understand speech, and the other was very aggressive and so impulsive that she was uncontrollable. Felbatol brought speech back to the first and drastically improved the behavior of the second. However, this drug must be used with great caution, because it can cause aplastic anemia. Frequent blood testing may be required to prevent possibly fatal complications.

Christopher Gilberg, a noted researcher in Sweden, has reported that an epilepsy drug called ethosuximide (Zarontin) stopped autistic symptoms and made speech return in a severely autistic child. Dr. Andrius Plioplys, at Mercy Hospital in Chicago, has found that autistic symptoms were reduced in three children aged three to five when they were given the anticonvulsant drug valproic acid (Depakene). They had no seizures, but there were some abnormalities on their EEGs. These treatments are most likely to have the best effect in young children. Besides improving auditory processing so that the child can hear speech accurately, the drugs may improve speech if given at a young age, when the brain is most receptive to learning language.

There is a great need for detailed research to find the specific autism subtypes in which anticonvulsant drugs are most effective. I speculate that they may be of most help for the kind of autistic child who appears to develop normally until eighteen to twenty-four months and then loses both speech and social interaction. This kind of child is more likely than others to have epileptic seizures and abnormalities that are easily detected on neurological tests. Neurological examination often indicates that such children give more evidence of central nervous system impairment than highly verbal autistic children. However, some children who have normal results on neurological tests may also benefit from anticonvulsant drugs. The tests may not be sensitive enough to detect their abnormalities. I had the kind of autism in which there was no period of normal language development. Unfortunately, the present diagnostic system lumps all autism types into the same diagnosis. From a medication standpoint, this is like mixing apples and oranges.

When loss of language occurs after age three, the disorder is usually called not autism but either acquired aphasia disintegrative disorder or Landau-Kleffner syndrome. One boy with Landau-Kleffner syndrome told his mother that there was something wrong with his ears and that his brain was not working right. He could not hear speech because of a buzzing noise in his ears. Children with full-blown Landau-Kleffner syndrome often show autistic behavior, and if they do not lose all their speech, it is greatly impaired, consisting of only a few nouns and verbs. They also speak in a monotone.

Dr. Pinchas Lerman in Israel has found that treatment with corticosteroids sometimes improves language. Prednisone has been used, but it has very severe side effects and should only be given if it has a dramatic positive effect on a child with severe autistic behavior. Dr. Lerman believes that treating the symptoms when they first appear improves the drug's effectiveness. The longer the brain is bombarded with epileptic activity, the more difficult the child may find it to recover speech. This is an area that needs further research. Since loss of language may be due to immaturity of the nervous system, it is possible that the steroids should be given for only a short period.

Treatment for Self-Abuse

A few people with autism engage in self-injury by either hitting their heads or biting themselves. There has been considerable research on the drug naltrexone (Trexan) for stopping such self-abuse. This drug, which is normally used for treating heroin overdoses, works by blocking the action of the brain's own opiates. Several different research studies have shown that it is often highly effective in stopping severe self-abuse in which an autistic person bangs his head, bites himself, or hits his eyes. In a study by Rowland Barrett and his colleagues at Emma Pendleton Bradley Hospital in Rhode Island, naltrexone was successfully used on a short-term basis to break the cycle of self-abuse.

When naltrexone is first given, self-abuse may temporarily escalate as the person attempts to get his opiate fix. The drug has the same effect on stallions that bite their own chests: the biting temporarily gets worse and then stops when the horse realizes it can no longer get its endorphin fix. In both animals and people, sensory integration methods such as massage, brushing the skin, and deep pressure can sometimes stop self-abuse without the use of drugs. A vibrator applied to the body part that is attacked is often helpful. Follow-up of a short series of naltrexone doses with sensory integration may help prevent a return of the problem.

Lorna King, an occupational therapist in Phoenix, Arizona, has observed that children who are self-abusive do not appear to feel pain. To reduce self-abuse, she does sensory integration exercises such as applying deep pressure by rolling the child up in a heavy mat and swinging on a swing. As the abusive behavior decreases, the ability to feel pain returns. Lorna emphasizes that sensory integration procedures must never be administered immediately after someone has hit himself, because they would inadvertently reward the self-abuse. It is best to do the exercises at set times each day so they will not be associated with self-injury

Jack Panksepp, at Bowling Green University, has found that naltrexone has also helped autistic children become more social, though finding the right dose is critical. The main reason this drug has not been used much in the United States is its extremely high cost. It has been marketed as a one-dose treatment for heroin overdose. However, a new version used for treating alcoholism may be less expensive.

An alternative for self-injury is Prozac. At a meeting I learned that one man completely stopped abusing his body when he took Prozac in combination with tryptophan (a natural substance in milk, meat, and tropical fruits that increases serotonin levels and enhances the effect of Prozac). These two substances must be used together with great caution to prevent serotonin overdose. Unfortunately, tryptophan supplements are not available in the United States, because the substance was banned by the FDA after some people died from taking supplements from a contaminated batch. The FDA has been overzealous in regulating alternative treatments, and removal of tryptophan from the market has hurt people with autism. The FDA is also attempting to regulate other supplements that are useful to autistic people, such as melatonin, DMG, B6, and magnesium.

Similarly, some medical professionals are hostile toward so-called natural treatments, which have often failed to work in controlled studies. The most sensible explanation for some of these failures is that autism is a very wide-ranging disorder with many subtypes involving different biochemical abnormalities. A supplement such as tryptophan will work on one autistic person and have no effect on another. Some of these supplements may work on only 10 percent of the autistic population, but for these people they are very helpful.

Neuroleptics

Some professionals may criticize me for writing about highly controversial experimental treatments, but experimentation with anticonvulsant drugs is far less dangerous than the high doses of neuroleptic drugs that some doctors give out like candy. Drugs such as haloperidol (Haldol) and thioridazine (Mellaril) are sometimes used in institutions to turn autistic people into zombies.

Neuroleptic drugs are very toxic to the nervous system, and staying on high doses of these drugs will almost always damage the nervous system and cause a movement disorder called tardive dyskinesia, similar to Parkinson's disease. The intended purpose of neuroleptic drugs is to treat hallucinations in schizophrenics. For schizophrenics, taking Haldol can mean the difference between having a relatively normal life and being totally out of control. That choice makes the risk of serious side effects acceptable.

Some people with autism also have Tourette's syndrome, a disorder in which the person makes repeated involuntary movements (tics) or says a short word involuntarily many times a day. These persons often respond well to a very low dose of Haldol. Haldol and Catapres are two medications that work for Tourette's. But people with autism who do not have Tourette's should usually avoid Haldol. Anyone in whom Tourette's is suspected or who has a family history of Tourette's should also avoid Ritalin, which can make Tourette's syndrome worse.

There will always be claims for magic breakthroughs and setbacks in the treatment of such a confounding disorder as autism. Most important for the autistic child or adult is a knowledgeable, open-minded physician who will try different medications, carefully observe their effect, and try new approaches if the first doesn't work. It is best to avoid mixing a whole bunch of drugs and suddenly stopping treatment. Dosages should be decreased gradually after long-term use, since abrupt withdrawal of certain drugs can have serious consequences. Some drug combinations also have strange interactions. Two parents of autistic children have reported that Prozac mixed with the anticonvulsant drug carbamazepine (Tegretol) made their children too sleepy to function well, although Prozac normally acts as a stimulant. Giving an autistic person two or three drugs in the same medication category makes no sense at all, but giving up to three drugs from different categories — beta-blockers, anticonvulsants, neuroleptics, tricyclic antidepressants, serotonin reuptake inhibitors, and antidepressants — may be an effective treatment in certain cases. Nonetheless, I have seen too many autistic people who have been overmedicated. Parents and teachers who see a person with autism for many hours each day are often in the best position to determine whether a medication is effective, though intelligent, verbal patients should be actively involved in evaluating their own drug treatments.

Many doctors also dismiss the idea that allergies and food intolerances can have an effect on autistic symptoms. These problems tend to be worse in more severe cases. Hundreds of parents have informed me that removing foods such as milk, wheat, corn, chocolate, and tomatoes from a child's diet has greatly improved behavior. There have been no cures, but there have been improvements. The foods that are most likely to cause allergic reactions are ones that formed a major part of the diet for the very young child. Often the foods that cause an increase in bad behavior are the ones that the child likes, and sometimes a child will crave the forbidden foods. Standard skin scratch tests for allergies are often unreliable and may fail to detect food allergies. One way to check is to put the child on a diet that temporarily eliminates two of the worst sources of allergies, milk and grain gluten. If milk and dairy products are removed, however, the child must be given calcium supplements for bone growth and nerve function.

Parents and teachers should join support groups such as the Autism Society of America to obtain the latest information on treatments. Through newsletters and other communications, these groups often provide information about new treatments before the professionals do. Autism is a field in which there have been many treatment fads and wild claims about cures. Each new development has been helpful, but there is not going to be an instant, magic treatment that will cure autism as if it were a broken leg.

Many desperate parents spend thousands of dollars and much heartache on endless medical tests at different hospitals. After a few basic tests are done, including a good neurological exam to rule out treatable medical conditions such as a brain tumor, epilepsy, thyroid problems, hydrocephaly, and metabolic problems such as undiagnosed phenylketonuria, tests are a big waste of money. It is better to spend limited financial resources on getting the child into a good educational program by age two or three. The drugs described in this chapter all require a doctor's prescription. As mentioned before, the care of a physician who is both knowledgeable about autism and open-minded about its treatment is essential. My message for parents is simple, and it's advice that a good doctor gave my mother over forty years ago: trust your instincts about doctors, about medications, about yourself, and, most important, about your child.

Believer in Biochemistry

Even though the medical information in Thinking in Pictures is over ten years old, it is still accurate. The principle of using lower than normal doses of SSRI (selective seratonin reuptake inhibitors), antidepressants such as Prozac (fluoxetine), Zoloft (sertraline), Paxil (paraxetine), and Celexa (citalopram) is still correct. Many parents keep telling me the same story. «He did really well on a low dose, but he became agitated and could not sleep on a higher dose.» The biggest mistake made with all types of antidepressants is that the dose gets raised when it should be lowered. Due to serotonin abnormalities in the brain, people on the spectrum often need lower doses of antidepressants. Sometimes one half to one third of the normal starter dose is all that is needed. Many people on the spectrum have told me that SSRIs are effective for reducing anxiety.

There are many SSRIs on the market. Dr. Max Wiznitzer, Rainbow Children's Hospital in Cleveland, Ohio, Dr. Ed Cook from Chicago, and Dr. Eric Hollander from Mt. Sinai Hospital in New York often use Prozac in high-functioning teenagers and adults. I know many professional people taking Prozac. When they were put on the correct dose they told me they felt great and it had no effect on their intellectual ability. Prozac is the only SSRI that is fully approved by the Food and Drug Administration (FDA) for individuals under eighteen years of age. Zoloft has limited FDA approval for treating obsessive-compulsive disorder in children. Doctors are allowed to prescribe other nonapproved medications to children by going «off-label.» This means that the doctor prescribes the drug for a purpose that is not on the drug's label. Off-label prescribing of drugs is done for many diseases. Some effective cancer treatments are «off-label» prescriptions.

Brains are different and some people will do better on one of the other SSRIs such as Zoloft. Try something that worked well in a genetically related relative. Japanese researchers report that differences in how well an individual with autism responds to SSRIs is affected by differences in serotonin genetics. Discussions with both doctors and individuals with autism have indicated that in some people, Paxil caused memory problems. However, if Paxil is working well for an individual, it would probably be best to keep taking it.

How to Make Medication Decisions

All medications have risks. One must weigh the risk against the benefit. A basic principle is to try one thing at a time. If a child enrolls in a new school or starts some other therapy at the same time a medicine is tried, it will be difficult to determine if the medicine is effective. If possible, wait two to five weeks between trying different things. Do not start a diet or supplement at the same time a medication is started.

To make a drug worth the risk, it must have an obvious benefit. One should say, «Wow, this stuff works!» Giving a child a powerful drug to make him slightly less hyper is probably not worth the risk. Giving a teenager or an adult who has uncontrollable rage a powerful medication to stop rage is probably worth the risk, if the drug prevents him from being kicked out of his school program or group home. When medications are used properly, they help to normalize function. Drugs must never be used to control a person by oversedation.

Drug interactions must be looked up. Prescription drugs have many interactions with over-the-counter and herbal remedies. For example, sinus or allergy medicine may reduce the effectiveness of antidepressants. One drug may either block or speed up the metabolism of another drug. When this occurs, doses will have to be lowered or raised. Some interactions are very dangerous. St. John's Wort may make HIV/AIDS drugs less effective. Taking St. John's Wort and antidepressants at the same time may cause mania. Other drug interactions can cause risky increases in blood pressure. Grapefruit juice interacts badly with many drugs. Dr. Joe Huggins, an autism specialist in Canada, explains that it can have an unpredictable enhancement effect on many drugs. Orange juice does not have this same effect. Some nutritional supplements are blood thinners. Taking too many blood thinning supplements or combining them with aspirin may be hazardous. I made this mistake and had severe nosebleeds.

One must also be careful switching brands of drugs. When I tried switching my antidepressant to a generic, it did not have the same effect. A good friend of mine had a similar problem. Differences in the way a pill is manufactured may affect the rate it is absorbed. This may require adjustment of the dose. If a generic is being used, it is best to keep using the same brand.

New Drugs Are Not Always Better

I am still taking the same low dose of Norpramin (desipramine) antidepressant. I have been on this drug for twenty-five years. Reports from parents indicate that switching an individual who is stable on an old drug to something different sometimes has bad results. If the individual is doing well and is stable on a reasonable dose of something old, it may be best to keep taking it. My old drug is probably not a good first choice for a new patient but it is working well for me. I forgot to take it one time for three days and I felt depressed. Unfortunately drug studies in most scientific papers are short-term studies of a few months. So when a new drug is marketed, little is known about long-term risks. There are almost no studies on long-term patients like me and I do not dare stop taking the drug. I have seen too many disasters when a person who was stable stopped taking their medication.

Atypical Antipsychotics

The atypical class of medications was not available when I wrote Thinking in Pictures. Treatment of schizophrenia was the original reason these drugs were developed. Atypicals work on both the serotonin system and the dopamine system in the brain. The main use of these drugs for individuals on the autism spectrum is to control rage in teenagers and adults. In some cases, they may be given to older children. Dr. Christopher McDougal at Indiana University School of Medicine uses atypicals for severe cases of self-injury, but Dr. Max Witznitzer reports success with treating self-injury with naltrexone. The five atypical medications that were available when this update was written are Risperdal (risperidone), Zyprexa (olanzapine), Geodon (ziprasidone), Seroquel (quetiapine fumerate), and Abilify (aripiprazole).

Risperdal was one of the first atypicals that was developed. Scientific studies show that it is a very effective drug for severe rage and aggression in older children and adults with autism. Compared to other medications such as Prozac, Zoloft, beta-blockers or Naltrexone, atypical drugs have severe long-term side effects. Since they have greater risks, a greater benefit is required to make them worth the risk.

There are reports in the scientific literature that tardive dyskinesia (a Parkinson's-like condition) has occurred in some individuals who take Risperdal. Weight gain is another major serious side effect of Risperdal and Zyprexa because they stimulate appetite. Some individuals have gained over one hundred pounds and the drugs may also increase the risk of getting diabetes. Seroquel and Geodon cause less weight gain and they can be substituted for Risperdal. However, Dr. McDougal reports that Seroquel may be less effective than Risperdal for controlling rage.

Side effects can be reduced by using very low doses of the atypicals. These doses may be lower than the starter doses recommended on the label. Dr. Joe Huggins uses low doses of less than 2 mg per day of Risperdal. Dr. Bennett Leventhal, a Chicago autism specialist, states that he uses very low doses of Abilify. He says it works like two different drugs depending on the dose. He recommends using low doses. The pharmaceutical companies have also developed medications that combine an SSRI with an atypical. Some autism specialists do not recommend these combination drugs and state that it is better to use the two agents separately.

Black Box Warnings

The Food and Drug Administration has placed «black box» warnings on drugs that may have greater risks. Many drugs have these «black box» warnings but very careful monitoring reduces risks. Dr. Michelle Riba and Dr. Steven Sharfstein, past presidents of the American Psychiatric Association, are deeply concerned that the black box warning label on SSRI and tricyclic antidepressants that warn of suicidal thoughts in children and adolescents «may have a chilling effect on appropriate prescriptions for patients.» They are concerned that individuals who need these drugs will not get them. An article in Science indicates that doses that are too high may be the cause of some of the problems with suicidal thoughts. Some patients reported they felt like they were jumping out of their skin. Dr. Martin Teachers of McLean Hospital in Boston states some of the doses of SSRIs were too high. The slight increase in suicidal thinking may occur during the first few weeks when the correct antidepressant dose is being determined. The risks of suicidal thinking are low. Paxil (paroxetine) may be associated with greater risks. The last two sentences of the Food and Drug Administration's black box warning reads, «The average risks of such events in patients receiving antidepressants was 4 percent, twice the placebo risk of 2 percent. No suicides occurred in these trials.» Trials were conducted on 4,400 patients. However, risks from atypicals, such as weight gain and tardive dyskinesia, may worsen the longer the individual is on the drug. Problems with antidepressants usually occur during the first few weeks and then the risk is reduced. Compared to antidepressants, atypicals have more serious long-term risks.

It is important to read the actual wording in a black box warning in order to make a wise decision. Many things have risks. Both cars and stairs are dangerous, but we use them every day.Nothing is risk-free. My old antidepressant now has a black box warning and I am going to continue to take it.

ADHD and Asperger's

Some individual with Asperger's may also receive a diagnosis of Attention Deficit Hyperactivity Disorder. Some Asperger individuals have good results with stimulant drugs such as Ritalin. With high-functioning people with either autism or Asperger's, stimulants or other ADHD drugs may have either a beneficial effect or a really bad effect. A person with autism who works in the computer industry has found that Prozac and Ritalin have been effective. However, individuals on the lower end of the autism spectrum often have bad results with ADHD medications. Stimulants must be used very cautiously in individuals with possible heart (cardiac) abnormalities. The long-acting formulations of stimulants may have greater risks. Parents have told me that in some children, switching to a long acting formulation caused problems.

Medications for Nonverbal Adults

Dr. Joe Huggins treats the most difficult low-functioning cases, people who have been thrown out of sheltered workshops or group homes due to rage or self-abuse. For this population, Dr. Huggins avoids the SSRIs such as Prozac and uses Risperdal, beta-blockers, and the anticonvulsant valproic acid. He uses Risperdal to control rage and keeps the dose under 2 mg per day. The anticonvulsant valproic acid is used to control aggression that occurs randomly and Risperdal works best for rage that is directed at people. Valproic acid controls rages that are caused by tiny seizures. If rage attacks that are not related to a specific place, person,or task occur, try valproic acid. Anticonvulsants such as valproic acid have to be given at the regular high adult dose. Valproic acid and some of the older anticonvulsants have a severe black box warning about liver and blood damage. Blood tests must be done to monitor for problems so that the drug can be stopped before permanent damage occurs. Problems are most likely to occur in the first six months and then the risk is reduced. Newer anticonvulsants are safer and can be used as a substitute but it may be less effective. However, Dr. Huggins has found that valproic acid is a very effective medication. Research has also shown that a similar drug called Depakote (divalproex) is effective for controlling explosive temper.

Dr. Huggins recommends beta-blockers such as propranolol for hot and sweaty undirected rage. The individual may sound out of breath and the rage is often not directed at a particular person. Dr. Max Wiznitzer calls beta-blockers underappreciated drugs that can be useful. They must not be used in people who have asthma.

Diet and Vitamin Supplements for Autism

Discussion with many parents has indicated that the casein (dairy) free and gluten (wheat) free diet has improved language and reduced behavior problems in some children and adults. The best results often occur in children who appear normal and then regress at eighteen to twenty-four months and lose language. A very simple but strict dairy- and gluten-free diet would consist of rice, potatoes, beef, chicken, fish, pork, eggs, fruits, and vegetables. Olive oil can be substituted for butter. In the beginning it is best to use all fresh, unprocessed meats and produce. Soy products must be avoided and drinks loaded with sugar should be reduced. If the diet is going to work, the good effects should become apparent within two to four weeks. Individuals who stay on this diet must take vitamins and calcium supplements. If the diet works, there are special casein- and gluten-free breads and cookies that will add variety. Dr. Max Wiznitzer stated that parents have reported that the supplement DMG appeared to have beneficial results. Studies conducted in Norway by Dr. Knivsbreg and his colleagues indicated that the diet was helpful. Children on the spectrum are highly variable. Treatments such as the diet may really help one child and have little effect on others. The highly variable symptoms in individuals with autism make valid scientific studies difficult because some individuals will respond to the diet while others do not. In very young children age two to six, it may be better to avoid drugs and try the diet and some of the vitamin supplements first. Some children have good responses from some of the nutritional supplements which provide omega-3 fatty acids. One study showed that fish oil and evening primrose supplements reduced ADHD symptoms and improved both reading and spelling in children. More information is available from the Autism Research Institute in San Diego, California. Gastrointestinal problems are more common in autistic compared to normal children. Autistic children who have these problems should be treated by a specialist.

Choosing Treatments

People often get into arguments about alternative versus conventional treatments. Sometimes a combination works best. Donna Williams has found that a tiny ¼ mg-per-day dose of Risperdal combined with the casein- and gluten-free diet worked better than either thing by itself. Prior to taking the Risperdal, she was unable to attend meetings in a large convention center due to sensory overload. In another adult, Zoloft combined with a gluten-free diet has reduced both headaches and sensory sensitivity problems. For both conventional medications and nutritional/biomedical approaches, avoid making the mistake of taking too many things. Adding more and more medications or supplements is a mistake and the risks of harmful interactions increase. Use careful logical evaluation to find the items that work and to stop using things that do not work.