Thinking In Pictures Part 4

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 pa.s.sion, 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 pa.s.sion 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 b.u.t.ton. 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 a.s.sociates 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 ma.s.sive 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 p.u.b.erty 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 p.u.b.erty. 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 c.o.c.ktail of high doses of six different drugs.

The proper use of medications is part of a good autism program, but it is not a subst.i.tute 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 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. 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 p.u.b.erty 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 ma.s.sage, 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. .h.i.t 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 a.s.sociated 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 inst.i.tutions 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 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. 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. j.a.panese 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 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. 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 cla.s.s of medications was not available when I wrote Thinking in Pictures 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 severe long-term side effects. Since they have greater risks, a greater benefit is required to make them worth the risk. 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 appet.i.te. 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 subst.i.tuted 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. Mich.e.l.le Riba and Dr. Steven Sharfstein, past presidents of the American Psychiatric a.s.sociation, 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 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 a.s.sociated 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. 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 a.s.sociated 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 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 subst.i.tute 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. 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 subst.i.tute 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 subst.i.tuted for b.u.t.ter. 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 Inst.i.tute 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 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.

7.

DATING D DATA.

Autism and Relationships MANY PEOPLE with autism are fans of the television show Star Trek Star Trek. I have been a fan since the show started. When I was in college, it greatly influenced my thinking, as each episode of the original series had a moral point. The characters had a set of firm moral principles to follow, which came from the United Federation of Planets. I strongly identified with the logical Mr. Spock, since I completely related to his way of thinking.

I vividly remember one old episode because it portrayed a conflict between logic and emotion in a manner I could understand. A monster was attempting to smash the shuttle craft with rocks. A crew member had been killed. Logical Mr. Spock wanted to take off and escape before the monster wrecked the craft. The other crew members refused to leave until they had retrieved the body of the dead crew member. To Spock, it made no sense to rescue a dead body when the shuttle was being battered to pieces. But the feeling of attachment drove the others to retrieve the body so their fellow crew member could have a proper funeral. It may sound simplistic, but this episode helped me finally understand how I was different. I agreed with Spock, but I learned that emotions will often overpower logical thinking, even if these decisions prove hazardous.

Social interactions that come naturally to most people can be daunting for people with autism. As a child, I was like an animal that had no instincts to guide me; I just had to learn by trial and error. I was always observing, trying to work out the best way to behave, but I never fit in. I had to think about every social interaction. When other students swooned over the Beatles, I called their reaction an ISP-interesting sociological phenomenon. I was a scientist trying to figure out the ways of the natives. I wanted to partic.i.p.ate, but I did not know how.

In my high school diary I wrote: "One should not always be a watcher-the cold impersonal observer-but instead should partic.i.p.ate." Even today, my thinking is from the vantage point of an observer. I did not realize that this was different until two years ago, when I took a test in which a piece of cla.s.sical music evoked vivid images in my imagination. My images were similar to other people's, but I always imagined them as an observer. Most people see themselves partic.i.p.ating in their images. For instance, one musical pa.s.sage evoked the image of a boat floating on a sparkling sea. My imagery was like a postcard photograph, whereas most other people imagined themselves on the boat.

All my life I have been an observer, and I have always felt like someone who watches from the outside. I could not partic.i.p.ate in the social interactions of high school life. First of all, I could not understand why clothes were so important when there were much more interesting things to think about and do in the science lab. Electronics and experimental psychology were much more intriguing than clothes. My peers spent hours standing around talking about jewelry or some other topic with no real substance. What did they get out of this? I just did not fit in. I never fit in with the crowd, but I had a few friends who were interested in the same things, such as skiing and riding horses. Friendship always revolved around what I did rather than who I was.

Even today, personal relationships are something I don't really understand. And I still consider s.e.x to be the biggest, most important "sin of the system," to use my old high school term. It has caused the downfall of many reputations and careers. From reading books and talking to people at conventions, I have learned that the autistic people who adapt most successfully in personal relationships either choose celibacy or marry a person with similar disabilities. By successful adaptation, I mean being able to lead a productive, satisfying life. Marriages work out best when two people with autism marry or when a person with autism marries a handicapped or eccentric spouse. The two partners get together because they have similar interests, not because of physical attraction. They are attracted because their intellects work on a similar wavelength.

I've remained celibate because doing so helps me to avoid the many complicated social situations that are too difficult for me to handle. For most people with autism, physical closeness is as much a problem as not understanding basic social behaviors. At conventions I have talked to several women who were raped on dates because they did not understand the subtle cues of s.e.xual interest. Likewise, men who want to date often don't understand how to relate to a woman. They remind me of Data, the android on Star Trek Star Trek. In one episode, Data's attempts at dating were a disaster. When he tried to be romantic, he complimented his date by using scientific terminology. Even very able adults with autism have such problems.

In News from the Border News from the Border, Paul McDonnell describes an experience with dating, explaining that "things were going fine between us until I started being obsessed with seeing her very often." Paul realized that he was pushing the woman to spend more and more time with him when she just wanted to be friends. He was not able to recognize that his girlfriend didn't want constant togetherness. Autistic adults with more rigid thinking have even worse problems when they attempt to date. They have no idea of appropriate behavior. One young man became interested in a girl and went to her house wearing a football helmet to disguise himself. He thought that it would be all right to look in her windows. In his literal, visual mind he thought that since he would not be recognized, it was okay to stand outside and watch for her.

Although business relationships can easily be learned by rote, dating is difficult. The social skills one needs to rent an apartment and keep a job were easier for me to learn than the social skills for dating, because I have very few emotional cues to guide me during complex social interactions. After one of my lectures, I received a totally inappropriate Valentine from a young man with autism. It was the kind of Valentine that third-graders give to each other. He expected me to consider it as a serious proposal and was disappointed when I ignored him. I did not write back, because I have learned from experience that responding to this kind of mail just encourages it. His teachers need to explain to him that making a proposal to someone you have just met is not acceptable. Like me, he has to be taught the rules of social interaction just as he is taught spelling. When I have to deal with family relationships, when people are responding to each other with emotion rather than intellect, I need to have long discussions with friends who can serve as translators. I need help in understanding social behavior that is driven by complex feelings rather than logic.

Hans Asperger stated that normal children acquire social skills without being consciously aware because they learn by instinct. In people with autism, "Social adaptation has to proceed via intellect." Jim, the twenty-seven-year-old autistic graduate student I have mentioned in previous chapters, made a similar observation. He stated that people with autism lack the basic instincts that make communication a natural process. Autistic children have to learn social skills systematically, the same way they learn their school lessons. Jim Sinclair summed it up when he said, "Social interactions involve things that most people know without having to learn them." He himself had to ask many detailed questions about experiences other people were having to figure out how to respond appropriately. He describes how he had to work out a "separate translation code" for every new person. Similarly,Tony W had an intellectual awareness of how other people felt, but he did not experience those feelings himself Donna Williams described how she copied emotions so that she acted normal, but it was a purely mechanical process, like retrieving files from a computer.

I do not read subtle emotional cues. I have had to learn by trial and error what certain gestures and facial expressions mean. When I started my career, I often made initial contacts on the telephone, which was easier because I did not have to deal with complex social signals. This helped me get my foot in the front door. After the initial call, I would send the client a project proposal and a brochure showing pictures of previous jobs. The call enabled me to show my qualifications without showing my nerdy self--until I was hired to design the project. I was also good at selling advertising for the Arizona Cattle Feeders' a.s.sociation annual magazine on the telephone. I just called up a big company and asked for its advertising department. I had no fear of anyone's rank or social position. Other people with autism have also found that becoming friends with somebody on the phone is easier than building a face-to-face relationship, because there are fewer social cues to deal with.

Autistic people tend to have difficulty lying because of the complex emotions involved in deception. I become extremely anxious when I have to tell a little white lie on the spur of the moment. To be able to tell the smallest fib, I have to rehea.r.s.e it many times in my mind. I run video simulations of all the different things the other person might ask. If the other person comes up with an unexpected question, I panic. Being deceptive while interacting with someone is extremely difficult unless I have fully rehea.r.s.ed all possible responses. Lying is very anxiety-provoking because it requires rapid interpretations of subtle social cues to determine whether the other person is really being deceived.

Some researchers don't believe autistics are capable of deception. They subscribe to Uta Frith's conception of autism, wherein people with the syndrome lack a "theory of mind." According to Frith, many people with autism are not able to figure out what another person may be thinking. It is true that autistics with severe cognitive deficits are unable to look at situations from the vantage point of another person. But I have always used visualization and logic to solve problems and work out how people will react, and I have always understood deception.

As a schoolchild, I played hide-and-seek. I learned how to trick the seeker into going the wrong way by stuffing my coat with leaves and putting it in a tree. I also had my entire boarding school believing that they had seen a flying saucer when I swung a cardboard saucer containing a flashlight in front of another girl's window. When she asked me about it, I told her she had probably seen a piece of insulation falling from the roof of our unfinished dormitory. I had rehea.r.s.ed a whole bunch of explanations for the sighting, including the falling insulation, so she wouldn't connect my absence with the appearance of the saucer. My ploy was successful. Within two days, most of the students thought that a real flying saucer had been sighted. This deception was easy because I had gone over in my imagination all the stories I was going to tell.

I've always enjoyed these kinds of tricks, because they require a vivid imagination, which I have in abundance. I'm motivated by the same challenge that makes hackers break into computers. I really identify with clever hackers. If I were fourteen years old today, I'm sure I'd be hacking away just for the thrill of seeing whether I could do it. I would never engage in harmful deceptions, though. In some ways I guess these tricks are a subst.i.tute for deeper human connection. They enable me to penetrate the world of other people without having to interact with them.

Often people with autism are taken advantage of. Paul McDonnell wrote about the painful experience of being betrayed by somebody he thought was his friend, having his money stolen and his car damaged. He didn't recognize the social signals of trouble. It is easy for me to understand the concept of deception when it involves playing tricks with flying saucers or stuffing coats with leaves, but understanding the social cues that indicate an insincere person is much more difficult. In college I was betrayed by students who pretended to be my friends. I told them my innermost thoughts, and the next thing I knew they were laughing about them at a party.

Over time, I have built up a tremendous library of memories of past experiences, TV, movies, and newspapers to spare me the social embarra.s.sments caused by my autism, and I use these to guide the decision process in a totally logical way. I have learned from experience that certain behaviors make people mad. Earlier in my life, my logical decisions were often wrong because they were based on insufficient data. Today they are much better, because my memory contains more information. Using my visualization ability, I observe myself from a distance. I call this my little scientist in the corner, as if I'm a little bird watching my