Autism - is a developmental disability which begins anytime from birth up to the first three years of life. It is a neurological disorder that affects brain function, especially in the areas of social interaction and communication skills. The incidence of autism has increased dramatically over the last 20 years, from 1 in 3,000 to 1 in 150, but so has our understanding of it. Long thought to be an emotional or behavioral problem, we now know it to have a biochemical basis. Those with a genetic predisposition may have adverse consequences to environmental factors (such as infections or vaccines) resulting in a cascade of events including imbalanced gut micro flora (yeast and bacteria), disturbed bowel function, malabsorption, nutrient deficiency, incompletely digested food residues escaping across the gut lining provoking food allergy reactions, and toxic metabolites (peptides, opiod substances, immune modulators) interfering with immune and brain function. Many children have heavy metal toxicity – often from the mercury used as a preservative in vaccines. Testing may include organic acid profile, stool cultures, amino acid profiles, fatty acid profiles, hair mineral analysis, blood tests for food antibodies (IgE and IgG4), anti–gluten tests, and tests for specific toxic peptides. Some remarkably effective new treatments are now available, including treatment of abnormal gut microbes, specific allergy therapy, nutrients, dietary interventions, cranial manipulation, and oral heavy metal chelation therapy. Intravenous secretin (a normal digestive enzyme) has been especially exciting and often improves these children dramatically to near normal.
According to the diagnostic and Statistical Manual of Mental Disorders, 4th edition (DSM-IV), in order for a diagnosis of autism to be made, the person needs to evidence problems in three broad areas: social interaction, communication, and stereotyped patterns of behavior. Some of the most common and classic features of individuals with autism include:
1. Social interaction
a. Impairment in the use of nonverbal behaviors (lack of eye contact, gestures, etc.)
b. Failure to develop age-appropriate peer relationships
c. Lack of spontaneous seeking to share interests and achievements with others
d. Lack of social or emotional reciprocity (lack of "relatedness")
a. Either delay in or lack of spoken language development with no compensation through alternative modes of communication
b. In verbal persons, marked impairment in conversational skills
c. Stereotyped and repetitive use of language
d. Lack of spontaneous age-appropriate make-believe or social imitative play.
3. Stereotyped patterns of behavior
a. Abnormal preoccupation with at least one stereotypic or restricted pattern of interest (can involve self-stimulatory behaviors in the areas of visual, auditory, tactile, vestibular, taste or smell)
b. Inflexible adherence to routines or rituals
c. Stereotyped and repetitive motor behaviors (hand flapping, rocking)
d. Preoccupation with parts of objects
Individuals with autism will probably not exhibit all of the above described characteristics, but will evidence at least six of them.
Other problems not used for diagnosis but frequently found in individuals with autism are:
1. Unusual responses to sensory stimulation (don’t like to be touched, or sensitive to textures)
2. Digestive problems, including constipation, diarrhea, and reflux
3. Self-limited, restrictive diets consisting primarily of wheat and dairy products
4. Allergy symptoms such as red ears and cheeks, and puffy faces
5. Sleep problems
7. Hypotonia (poor muscle tone)
What causes Autism?
At this point, no one really knows what causes the autistic spectrum of disorders. Much work is being done in the field of genetics, and we find increased risk of autism in some families, but nothing as of this date has been proven as to whether the disorder is genetically induced. Other theories abound; some propose autism to be present from birth, and others conclude that it is a form of brain injury with a precipitating factor.
Most children diagnosed with autism pass their predicted milestones appropriately. Almost all will sit, walk, and relate as toddlers. Most develop appropriate for age speech and language skills. At some point, however, usually between 15 and 24 months, the "lights go out" or behavior becomes unmanageable or regressive. Parents frequently recall that these changes occur around the same time the child developed colic, ear infections, allergies, asthma, eczema, seizures, reacted negatively to an immunization, became a picky eater, or could not sleep though fever, immunization, head injury, or routine surgery. Certain theories consider brain injury as a result of immunizations, or brain dysfunction from Candida overgrowth following antibiotics, from inadequate nutrition, from allergies and sensitivities, from environmental toxins, or a from a genetic predisposition to autism set off by any of the above. Vaccines until very recently contained Thimerosol – a preservative which has high levels of mercury. Those with impaired heavy metal detoxification pathways may get toxic levels of mercury after repeated immunization shots. The truth may lie in some or all of the above.
Diagnostic Assessments for Autism.
Autism is usually first diagnosed by specialists in pediatric development. In our, office, we can do many different laboratory test to see if any form of treatment may improve the multiple dysfunctions of the patient who already has been diagnosed with Autism or autistic-like syndromes. The following are some of the test that we may perform on autistic individuals (we rarely do all of the test, but only do those test that seem likely to suggest treatment that may make a difference according to the history and symptoms of the patient):
1. Comprehensive Digestive Stool Analysis– this test shows if there are problems with pancreatic enzyme utilization, digestion of meat and fibers, absorption of nutrients, and adequate immune function of the gut.
2. Stool Culture with Parasitology– this test shows if an overgrowth of yeast is present in the stool, if there are difficult to diagnose parasites, if there is adequate beneficial bacteria, or if there is pathogenic ("bad") bacteria.
3. Urine Organic Acid Analysis– this test can determine through metabolites passed in the urine if yeast or anaerobic bacteria such as Clostridium difficil is present in the body.
1. Body Bio Fatty Acid Analysis and Metabolic Analysis– this is an analysis of the blood for fatty acid and chemical imbalances, resulting in an individualized list of supplements for the patient created by Dr. Patricia Kane, an authority on nutrition and autism. This includes a specially prescribed lip-protein drink that stimulates brain function, and seems to improve the appetite and food choices of most autistic individuals.
2. Great Smokies Fatty Acid Analysis–a less expensive test analyzed by the physicians in our clinic.
3. Blood Cell Analysis of Nutrient Function– tests for how the body is utilizing specific vitamin and minerals and if deficiencies exist.
4. Amino Acid Analysis– uses urine and/or blood to analyze the amino acids in the body and recommends an individualized amino acid supplement along with suggestions as to other nutrients that are needed to form and utilize proteins in the body.
Allergies and Toxins
1. Electro dermal Testing for Allergies– this procedure uses electrical resistance equipment to test acupuncture points to determine the effects of foods, inhalants, and chemicals on the energy of the body.
2. Elisa IgE and IgG Testing for Allergies– a blood test for fast reacting and slow reacting allergies to foods and inhalants.
3. Hair Analysis– this test looks for levels of toxic metals and necessary minerals in the hair.
4. EDTA, DMSA, or DMPS Urine Challenge Test– tests for excessive levels of mercury, lead, and other toxic metals.
Treatment of Autism.
Normalizing Digestive Tract Micro-organisms
1. Stool and organic acid testing- usually gives us a good idea of what microbes in the gut need to be treated. Abnormal organic acids in the urine may indicate the presence of yeast or inappropriate anaerobic bacteria. The comprehensive parasitology often indicates not only what pathogenic microbes are present, but also what specific medications are effective for eliminating those microbes. We first like to treat any parasites or bacteria, and then treat yeast if they are present. See also Diagnostic Assessment for Autism.
2. Effective yeast control- involves appropriate medication to kill the yeast (the most effective ones are indicated by the lab test), special diet, Candida antigen, and friendly bacteria replacement. We prefer using Nizoral or Diflucan to kill yeast. Nystatin may work, but has to be taken 4 times daily, is nasty tasting in the powdered form, is not absorbed so is not effective in killing beyond the surface of the gut lining, and is not generally as powerful in killing yeast. Herbals are even less effective and are often hard to get into these children in adequate doses to get the job done. Medication for yeast should be taken at least three months, and even longer if there is ongoing, progressive improvement with treatment.
3. Candida antigen- a liquid containing fragments of a number of the common Candida (yeast) species that cause disease in humans. It is given under the tongue at an allergy treatment dosage, and may reduce a variety of allergic problems. The main purpose for giving these killed microbes is to provoke the immune system to develop immunity against these yeast species. We think that this is an important step in helping the immune system to keep the yeast under control.
4. Treatment with friendly bacteria-various friendly bacterial species and combinations are available for treatment. The bacterial species best known is Lactobacillus acidophilus, often known simply as acidophilus. There are now known to be many different species of friendly or beneficial bacteria residing in a healthy gut. The stool test indicates the levels of 3 of these species, and the type of organisms recommended for treatment will depend on the lab values. Children under 6 years of age should include Bifidus bacteria in their treatment. We prefer treatments which include a variety of species of friendly bacteria, one of our favorites being Vital 10 (which contains 10 bacterial species). Treatment with friendly bacteria should continue for many months, depending on the results of treatment and other criteria.
An important part of the treatment for autism (as well as any other disease) is adequate amounts of healthy, nutrient-rich foods. This is especially important for autistic children, because they often have digestive problems which interfere with the uptake of nutrients and metabolic problems which interfere with the utilization of those nutrients. Many of these children are very fussy eaters and will only eat a very narrow range of foods. This presents a real challenge in many cases, but our dietitian may be able to help. Certain nutritional supplements have been shown to reduce the fussy eating and increase the range of foods that will be accepted.
The optimal nutrient requirements of autistic children may vary dramatically from one child to another. Although we believe that most of these children have significant nutrient deficiencies, they simply do not have a deficiency pattern in common. Various genetic, metabolic, digestive, and dietary patterns may result in widely differing needs. We can not simply give every child a whole bunch of nutrients and expect that to take care of the problem. Certain nutrients compete with each other. Some nutrients (especially certain amino acids and fatty acids) may be present in excessive amounts due to metabolic defects, and adding more or those specific nutrients may make things worse. Fortunately, the available testing for nutrients often gives us a lot of help in making nutrient recommendations. These recommendations are usually done on an individual basis based on results of testing, clinical symptoms and findings, and response to nutrient trials.
Toxic levels of mercury in the brain appear to be a major contribution to autism in severe kids – especially those with regressive autism. DMSA is a heavy metal chelation that has generally been effective.
Conventional allergy treatment for almost 100 years has involved injections twice a week of antigenic material, increasing the dose with each injection. Although this has been reasonably effective for a narrow range of seasonal allergies, it usually takes at least a year to begin working, and does not work for foods, chemicals, and other allergies. Improved allergy treatment techniques seem to have a lot of advantages.
1. Sub-lingual antigens- (under the tongue) can be used to control a wide range of reactions to inhalants, foods, chemicals, organisms, and even hormones and neurotransmitters. This treatment works very well for most people for a range of allergies including hay fever, asthma, hives, eczema, migraines, other headaches, and other conditions. Of particular interest in autism, hyperactivity, and attention deficit disorders (ADD) is the use of neurotransmitters used under the tongue in allergy treatment dilutions. These same neuro-chemical used by our brains are also found in foods. Treatment with these compounds not only frequently shut off food reactions, but may also improve a variety of reactions which affect the brain. We have seen rather dramatic improvement in hyperactivity, irritability, aggression, headaches, trouble concentrating, and other brain-involved symptoms from the use of this treatment. This would suggest in these children the role of allergy in producing those problems. Let us hasten to add that not all of these brain symptoms are induced by allergy, and not all will respond to the above treatment. In the cases in which a particular food or other exposure produces hyperactivity or other behavioral or functional brain problems, then allergy treatment is likely to be effective. These treatments involve very tiny amounts of natural plant materials, and so are extremely safe. Some people will react to them, like they can to anything else, but this can usually be corrected easily and the optimal treatment dose can usually be readily found.
The disadvantage of the sub-lingual treatment is the fact that they have to be given frequently, usually three times daily at first (less often later on), and that each bottle only contains a relatively narrow range of antigens.
Transfer factor is an immune modulating compound that has been shown to be effective in some cases of autism. Transfer factor is found in high levels in colostrum - the first milk produced by mammals to protect the baby from the viruses, bacteria, and parasites it will face in the hostile world. Various products are available in which the transfer factor and other immune modulators have been extracted from colostrum, leaving behind the milk fats, proteins, and sugars. These may be more effective than plain colostrum.
Secretin is a natural hormone which causes the pancreas to secrete digestive enzymes. It was discovered quite by chance that injections of secretin in some autistic children produced a dramatic improvement in language development and other autistic features.
Victoria Beck, a very bright mother with an autistic child, made the observation and her persistent efforts brought it to the attention of the medical world. She has done a lot of research, and written a work book called Unlocking the Potential of Autism 2. She is in close contact with many of the doctors using the treatment, and much of the following information comes from her. We are indebted to Victoria and her husband Gary for their tireless, unselfish efforts. Information from parents using the treatment is available on the following web sites: www.secretin.com and www.autism.com/ari. Although new and used on only a few hundred children at this time, it has produced significant improvement in about 70% of those treated. Sometimes the results have been quite astounding! This product appears to be extremely safe, with little projected down side.
1. Secretin administered by an intravenous infusion - is given about every four to six weeks. There may be a few days of increased hyperactive behavior after treatment, although this is not always the case. Improvement may come right away or may take close to a week to experience. There have been a few cases in which there was no improvement after the first infusion, but there was good improvement after the second. In no cases have improvements occurred after the third treatment when the first two have not helped. We therefore recommend trying at least two treatments and not taking any more if they do not help.
2. Secretin given sublingually (under the tongue); for more than 15 years we have worked with a variety of hormones given under the tongue in very tiny doses. We have used progesterone, estrogen, testosterone, cortisone, insulin, and thyroid hormones. Even at very tiny doses (1/100,000 to 1/1,000,000 of the normal daily output) we have seen some very dramatic responses. This treatment has especially been remarkable in shutting off unpleasant symptoms associated with pre-menstrual syndrome (PMS). These products are given at an allergy treatment dilution and may work in part by shutting off an inappropriate immune response to one’s own hormones. It has been very effective in shutting off allergic responses to hormone replacement medications. They may also work like a homeopathic remedy, and are indeed being produced using various homochords of the hormones in a classical homeopathic way, and are given at homeopathic (very dilute) dilutions. These dilute hormones may also work by stimulating or signaling hormone receptor sites, producing an effect similar to that obtained by a much higher dose of the same hormone. Secretin has been used by a few doctors in a similar way to that used by us for other hormones. Encouraging reports are being received about effectiveness, but only limited numbers of autistic children have been treated. We now have this formulation available and it will be available for those who want to try it. It should certainly be safe and inexpensive. We will definitely try it for those children who react adversely to the standard doses of secretin. It may also be useful in conjunction with secretin to smooth out the hyper activity that some children get just after a treatment, and prolong the effective period after treatment. More time and experience will provide more information about the role of this route of administration.
3. Secretin Transdermally - There has been a prolonged period of secretin use under the skin on a few children. This has several major advantages. The effect appears to be more even, steady, and continuous compared to the intravenous route. It can be given at home and is painless. It also has a few disadvantages. Secretin is rather unstable once it has been reconstituted, so it is best at that stage to mix a little up each time it is given. The ideal dose is unknown at this time, and the amount that is absorbed through the skin is variable from person to person. For these reasons, some trial and error might have to be done in order to establish the best dosage. It takes more of the product to be effective, with some children reportedly using five or so vials per month. This has been prohibitively expensive for many parents in the past. With the availability of other secretin sources, the cost now is much less and is within reach of most parents.
We will be doing two intravenous infusions on children with close clinical observations following each treatment to evaluate effectiveness and to identify the various facets of the illness that improve. This evaluation becomes the "gold standard" - the criteria upon which the effectiveness of the transdermal approach can be evaluated and the treatment dosage adjusted. After that, then parents are free the try the transdermal approach if desired.
Improvement in various aspects of autism (especially language development) usually occurs for several weeks after treatment and then the improvement stops. Most children maintain the improvement that occurred such as remembering the new words that they have learned, but may show no further improvement after the initial few weeks. They do not generally regress, however. After the next treatment in 4 to 6 weeks, we again see a similar pattern of improvement. Month after month with further treatment, there is generally progression until these children become more and more "normal" in their behavior and learning.
Although there is much to learn about the use of secretin and what things will interfere or improve treatment, the following guidelines may help to improve the chances of getting good results. Those doctors who are using the DAN (Defeat Autism Now) protocol seem to have obtained better results that some of the doctors who treat mostly children that have seizures along with their autism. This could suggest that those children treated with the DAN protocol who have been treated for digestive tract imbalanced microbes, and who been treated with nutritional supplements may respond better to secretin. It could also mean that children with seizure disorders may not respond as well to treatment, or that some of the medications used to treat these children could interfere with the results.
It may be a good idea, therefore, to identify associated problems with gut microbes, possible metabolic problems, and nutritional deficiencies at the beginning, and then correct these problems as well as possible along with the secretin treatment. These treatments should be done either before secretin is given or between treatments. Some of the treatments seem to interfere with the effect of secretin if given at the same time.
Possible Interfering Factors:
1. Medication- including psychotropic drugs, anti-seizure drugs, antidepressants (especially SSRIs), Nystatin, and antibiotics.
2. Digestive aids- such as friendly bacteria supplements (lactobacillus, acidophilus), pancreatic digestive enzymes.
3. Dietary- milk and wheat especially can interfere (especially if there is a milk or gluten intolerance), refined foods, food additives, and fruit juice.
Keep in mind that these are possible interfering substances, and they may or may not prove to be a problem when further experience is obtained. Good results may be obtained in spite of these factors, but there may be a higher statistical chance of success with adherence to the guidelines.
If it is possible to stop medications for 3 or 4 days before treatment, and for a full 3 weeks after treatment, that would be ideal. If a course of antibiotics or yeast treatment is indicated, it is best to get the treatment finished before the next injection. If children develop seizure activity or become unmanageable without medication, it may be better to have them remain on medication. Note: We do not recommend that any autistic child be taken off any medication prescribed by another doctor unless that doctor is consulted, and his or her help enlisted in determining the feasibility of stopping the medications.
Further information will be forthcoming as more experience is obtained by those of us using this exciting treatment.
1. Remington, D, Swasay, B. Back to Health. Salt Lake City, Utah: Publishers Press, 1986.
2. Beck, G, Beck, V, Rimland B. Unlocking the Potential of Secretin. The Autism Research Institute, 1998.
3. Website for Autism Research Institute - www.autismresearchinstitute.com