Thinking in Pictures: My Life with Autism (19 page)

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.