Thinking in Pictures: My Life with Autism (20 page)

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