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.
