Introduction
Autism continues to be a puzzling condition, although there is general agreement that it is due to malfunctioning of the central nervous system. On some occasions, the specific cause is determined, e.g. fragile x syndrome, tuberous sclerosis, untreated PKU, brain damage secondary to infections or very low birth weight. The basic mechanism for autism, however, is still not defined, and thus a variety of treatments continue to be offered. It is very natural that families and therapists would seek out any therapy which sounds promising. Physicians who work with autistic children have to find a sensible balance between excessive criticism and passive acceptance of the wide variety of therapeutic options; this is not easy since many of the therapeutic options are not described or evaluated in the traditional scientific literature.
The internet provides an abundance of information on autism and the treatment of autism. The variety of articles can be hard to evaluate and apply. Helpful resources include:
Following are comments on various treatment options from the point of view of a developmental pediatrician. Special Education and Behavior Modification Programs
These approaches are clearly the most important although there may be differing opinions about specific educational and behavioral strategies. The intensity of a program is one of the most common sources of debate. Parents should become well informed about the various educational/behavioral options - information about the qualifications of the staff, the costs, the rationale for the program, and results of follow-up studies should be obtained. Vitamins and Nutritional Supplements
Vitamin B6 and Magnesium continue to be suggested, and there is some slight rationale since B6 is related to neurotransmitter formation. I have not discouraged parents from trying the B6/Mg preparation, a preparation which actually contains a variety of other substances as well, if they observe Dr. Rimland's guidelines and attempt some sort of ad hoc rating scale. It would also be helpful to have a "blind" rater, such as a school teacher, but this is often not possible. In my experience, at least, families have not persisted with the B6/Mg therapy.
There are other less popular variations on vitamin therapy which place the child at risk of toxicity from excessive vitamin intake. Therefore, it would be advisable for a parent to check with a physician or nutritionist before embarking on less well documented megavitamin programs.
DMG (dimethylglycine) use is of uncertain rationale, but some anecdotal reports make it rather irresistible. However, there are no controlled studies suggesting positive effects. TMG (trimethylglycine) is a more recent alternative. Medication
Psychopharmacologic agents can alleviate specific behavioral problems. However, if medications are tried, there should be specific goals in mind and some efforts at objectively evaluating the results. There are a wide variety of psychopharmacologic agents, including sedatives, tranquilizers, antidepressants, anticonvulsants. Most have potential side effects and some can interact with other medications. Therefore, medications need to be carefully monitored. They never replace the need for appropriate education and behavior management. Melatonin
Melatonin is a hormone secreted by the pineal gland in the brain. Its secretion is triggered by changes in light, with increasing amounts being released in darkness. Melatonin has been helpful in regulating the sleep cycles of persons with sleep disorders, developmental disabilities, and blindness. It has helped some autistic persons. It is safe for short term use. Long term use cannot be supported because melatonin may affect other biologic rhythms. Landau-Kleffner Syndrome Treatment
Landau-Kleffner syndrome is a seizure disorder, rarely confused with autism. This condition, also known as acquired epileptic aphasia, usually presents itself after a child is 2-3 years of age. There is a rather abrupt loss of language comprehension, with associated communication problems and confusion, in a previously normally developing child. There are usually accompanying clear cut seizures, and the EEG would be abnormal. A distinction can generally be made between the language regression in Landau-Kleffner syndrome and the more pervasive communication/social regression in autism. If there are concerns about Landau-Kleffner syndrome, a neurologist should be consulted. Therapies have included anticonvulsants, corticosteroids, and neurosurgery.
(Autistic persons can also have more typical seizure disorders, which would be primarily treated with traditional anticonvulsant therapy). Dietary Intervention
Nutrition has become an increasingly important topic regarding many medical and developmental problems. The public is repeatedly bombarded about the risks or benefits of various food substances. Regrettably, physicians do not have extensive training in nutrition. However, there is currently no data indicating that autism is caused by dietary deficiencies or excesses.
Children with autism frequently have problematic eating habits, especially in the preschool/toddler period, because of their sensory difficulties and behavioral characteristics. A limited diet might lead to anemia or constipation, with consequent behavioral problems.
An organization originating in Reading, England, known as the Autism Intolerance and Allergy Network (AIA), is pursuing the concept of an association between autism and food intolerance/allergy. The AIA suggests that a subgroup of autistic persons do have an intolerance to a variety of foods and chemicals which could enhance the autistic symptomatology. An ongoing study has suggested a deficiency of a detoxifying enzyme. In these cases, dietary alterations reportedly reduce, but do not eliminate, the autistic characteristics.
Other specialized diets, particularly elimination of gluten and/or casein, have been tried because of the theoretical possibility that abnormal gastrointestinal functioning due to wheat or milk protein sensitivity could lead to passage of potentially neurotoxic substances. These diets are extremely challenging to maintain, and it is essential that an objective appraisal system be in place.
Although food intolerances and/or allergies could cause behavioral changes, it seems unlikely that the full blown autistic syndrome would result. However, if a child is autistic and if he has obvious adverse reactions to some dietary products, then testing for metabolic or allergic problems should be considered. Similarly, if an autistic child seems to demonstrate less atypical behavior when he has been ill and not eating, the possibility of a metabolic or immunologic aberration exists. In such instances, it would be appropriate to contact a physician experienced with pediatric metabolism, allergies, and immunology. There are such specialists at all university centers. Secretin
Secretin is a hormone produced by the small intestine - it stimulates specific actions in the pancreas, stomach, and liver. It is used in some tests of the digestive system. Secretin is part of a family of hormones which do have some receptors in the brain (e.g. hypothalamus, hippocampus). Currently, no study, using either porcine or synthetic secretin, has demonstrated the effectiveness of secretin in autism.
The reported positive responses to secretin in a small number of children are of interest. There is the possibility that a subgroup of autistic children could be helped by secretin. However, secretin therapy should only be tried in well controlled clinical studies. Anti-Yeast Therapy
Although some therapists suggest a link between chronic candidiasis and autism, the traditional medical community finds it hard to explain the association. It is true that autism is often diagnosed when a child is a toddler, a time when children are often treated for middle ear infections with antibiotics. Excessive use of antibiotics can, on occasion, cause "yeast overgrowth." However, the side effect of central nervous system yeast infection seems very unlikely.
Although Dr. Rimland (Director, Autism Research Institute) has collected very interesting data from parents regarding the positive responses to Nystatin therapy, there seems to be little other confirmatory data. (It should be emphasized that a positive response to Nystatin could conceivably relate to some other mechanism than its anti-Candidiasis function.) Sensory Integration Therapy
Although there have been some misunderstandings regarding SIT, it is generally well accepted and can be extremely helpful for some autistic children, particularly those who over or under react to various environmental stimuli. The Squeeze Machine
This machine, designed by Dr. Temple Grandin, allows the user to regulate deep pressure stimulation. It has not been fully evaluated. It probably represents a form of sensory integration therapy; it might be helpful to selected autistic persons, although there could be suitable alternatives. Holding Therapy
This therapy involves the forced holding of an autistic child through phases of resistance and acquiescence. The rationale for this therapy is that a bond was not established with the affected child, perhaps because of problems with social reciprocity, and thus the child withdraws to defend himself against the perceived rejection.
Ms. Gerlach, the author of the Autism Treatment Guide, rightfully suggests that holding therapy may represent a somewhat "stressful" version of an aspect of sensory integration therapy. I do not see it as particularly harmful from a medical point of view, and certainly hugging has its benefits. However, I am concerned about the premise on which it is based and the possible adverse psychological effects on the parents, who had theoretically "rejected" their children. Auditory Integration Therapy
This form of therapy evolved because of autistic persons' frequent abnormal responses to sound. It is now administered by both sensory integration therapists and audiologists/speech therapists. The usual program involves 2 daily half-hour listening sessions for 10 consecutive days.
From a medical point of view, this therapy would not be harmful. It is, however, difficult to understand how such a brief course of therapy could have long-lasting results. It is of interest that one follow up study (1996) suggested improvement, at least for twelve months, in both a group receiving formal auditory integration therapy as well as a control group who simply listened to the same unmodified music. Music Therapy
Music therapy has been well accepted for many neurodevelopmental problems. It is quite reasonable that music could have positive behavioral effects, but it is not a specific therapy for autism. Doman/Delacato Method
This treatment for the brain injured was begun in 1956 and is based on efforts to "retrain" the injured parts of the brain. A modification of the extremely intensive patterning program is currently used. The American Academy of Pediatrics did not endorse the original program, at least partly because of lack of published data. The Institutes for the Achievement of Human Potential consider autism to be the result of a brain injury of unknown origin for which the total program of neurologic organization is recommended. The institutes now offer five treatment program ranging from a home study program to an intensive treatment program.
In my opinion, parents would find more accessible and validated services by seeking out physical and occupational therapists with backgrounds in neurodevelopment and sensory integration. Craniosacral Therapy
This form of therapy involves hands on manipulation of the head, neck and spine. Occupational and physical therapists, as well as other professionals, may be trained in this technique. I am unaware of scientific validation of this approach. If chosen, the therapist should state his goals and time frame. Facilitated Communication
There is ample evidence regarding the lack of validity of this technique and the harm it can inflict on families, if not on the autistic person. The American Academy of Child and Adolescent Psychiatry, the American Academy of Pediatrics, and the American Association of Mental Retardation have all questioned this technique. Specialized Eye Glasses
Another treatment option has been specialized eye glasses. Both tinted lenses and special prisms have been mentioned. There appears to be no scientific basis for the efficacy of such lenses in autism. If the autistic person has a documented ophthalmologic problem (e.g. near or far sightedness, astigmatism, muscle imbalance, light sensitivity), the appropriate treatment is obviously essential. A pediatric ophthalmologist should be consulted before considering any type of specialized lenses. Immune System Therapy
Because of some evidence of immune system irregularities in the autistic population, immune globulin therapy has been of interest. A course of intravenous immune globulin, given monthly for 6 months with long (one and one half to two hours) infusion periods, has been attempted. Reported results have been inconsistent. At this point, there is uncertainty about the medical advisability of this approach. Chelation Therapy
The process of removing metals (primarily mercury) from the tissues of autistic children was begun because of concerns that the thimerosal (ethyl mercury) preservative in multidose vials of pediatric/infant vaccines could have caused neurotoxicity/autism. Epidemiologic evidence is not supportive but the CDC, NIH and the Institute of Medicine Immunization Safety Review Committee are pursuing the issue.
Thimerosal was never in MMR, pneumococcal or inactivated polio vaccines. It was in DPT, Hib and Hepatitis B vaccines. The FDA & EPA called for removal of mercury in vaccines in 1999. Current vaccines contain no thimerosal or minimal amounts.
If mercury excess is suspected, blood & urine analyses, rather than hair analyses, should be done. Chelation therapy, which could take up to two years, does have risks (e.g. liver damage & allergic reactions). If such therapy is selected, careful medical monitoring is essential. Conclusion
I have great sympathy for autistic persons and for their families. I fully understand their interest in all forms of therapies and the tantalizing effects of reports of total cures after relatively simple therapies.
It can be very difficult to obtain accurate information about some treatment options. Some have not been validated, or evaluations have led to inconsistent results. Fortunately, most proposed therapies, other than some nutritional and pharmacologic therapies, are not potentially harmful, but they could cause psychological and/or financial grief.
Joanna S. Dalldorf, M.D. TEACCH Pediatric Consultant September 2002
