AN ALTERNATIVE APPROACH TO TREATMENT OF AUTISM
by William R. Ware, PhD
Today autism is called Autism Spectrum Disorder (ASD) and comprises a range of developmental disabilities involving dysfunctional ability regarding social interactions, severe communication problems, restricted, repetitive behavior and patterns of behaviour, and restricted interests, activities and imagination. The disorder is characterized by an early onset, generally before age 3 to 5. It can be present at birth or develop later. But ASD is really a collection of developmental disorders which include full-fledged autism as described above and as well attention deficit disorder, attention deficit hyperactivity disorder, and a catch-all diagnosis of pervasive developmental disorder (PDD) for children that do not meet developmental milestones and exhibit autistic symptoms, and yet still retain at least some ability to speak and communicate. The ASD is described in detail in the Diagnostic and Statistical Manual of Mental Disorders, the famous DSM now in its revised fourth edition (DSM-IV) with the fifth edition currently being prepared. DSM-IV describes over 200 mental disorders thought to plague humans, along with suggested treatments. The editor-in-chief of DSM-IV was an academic psychiatrist from Duke University where he was chair of the department of psychiatry. In an opinion piece in the Los Angeles Times on March 01, 2010, Frances made a remarkable confession:
Our panel tried hard to be conservative and careful but inadvertently contributed to three false "epidemics" -attention deficit disorder, autism and childhood bipolar disorder. Clearly, our net was cast too wide and captured many "patients" who might have been far better off never entering the mental health system.
The latest statistics from the Centers for Disease Control and Prevention (CDC) gives a prevalence for ASD of 1 in 88, based on surveillance in 2008 of children born in or after 2000. In 2000 the number was 1 in 150. According to the CDC, data from Asia and Europe also find similar prevalence.1 Some, when they think about a prevalence such as 1 in 88, find such a disaster beyond comprehension and wonder what could have possibly gone wrong.
It is not clear the extent to which the DSM-IV, published in 1994 and revised in 2000 has influenced these numbers. Today there is considerable controversy in psychiatry concerning overdiagnosis and overtreatment of pediatric mental disorders. Nevertheless, there are many children with genuine autism identified by unmistakable behavior patterns and developmental problems. The impact on their lives, the lives of their parents and siblings, and ultimately on the healthcare system is clearly immense.
WHAT CAUSES AUTISM?
In her book Children with Starving Brains. A Medical Treatment Guide for Autism Spectrum Disorder, 4th Edition, Dr. Jaquelyn McCandless,M.D., board certified in both neurology and psychiatry with 16 years of experience in the field of autism, provides an answer to this question.2 The short form is that autism involves a combination of genetic and environmental factors. The long answer involves eight distinct theories or models.
Physicians involved in the non-conventional treatment of autism2,10 emphasize the multiplicity of causes listed above and that several generally coexist in the autistic child. Only when all the causative issues present are addressed will therapeutic success be achieved.
WHAT MAINSTREAM MEDICINE HAS TO OFFER
An overview is available from the National Institutes of Health, National Institutes of Child Health and Human Development on their website.
Thus the message parents presumably receive when their child has been diagnosed with autism is not very optimistic if it is based on the views of mainstream medicine. What is most important and significant is that the above list does not address the currently suspected causes and regards manifestations of autism to originate and have their cause in the brain rather than elsewhere in the body. In addition, the use of psychiatric drugs involves pure symptom manipulation and the drugs have never been cleared by the FDA as being either effective or safe for these indications. Psychiatric drugs obviously do not get at the root of the problem but only attempt to control behavior and other symptoms. There is a considerable literature on the adverse effects of psychiatric drugs when given to children and the suggestion has been made that the observed benefits are a fantasy and that the drugs actually appear to improve the symptomatic picture by altering and damaging the brain.11-14 The bottom line seems to be that parents are being told that there is little hope and that they must prepare for a very difficult life, not only theirs but their child's.
The views of mainstream medicine can be likened to thinking in the box. Autism is viewed partly as a genetically determined fixed brain-based disorder and is defined by three characteristics. The child has difficulty with expressive and receptive communication, making eye contact or expressions of socialization, and exhibits repetitive or other odd behaviours. If the parents mention the child's rashes or digestive problems or intestinal problems that they note seemed to appear along with the above mentioned three characteristics defining autism, this will probably be ignored. The physician is documenting the diagnosis of autism and is not interested in bowel problems. The immune system and the gut are not relevant to the official view of autism. Moreover, they then become irrelevant in the context of therapy.
Thus there is a reluctance to accept alternative views and consider the implications of the multiple causes of autism that have been proposed. They do not fit with the accepted view of the disease. There may even be satisfaction when some study, perhaps flawed, demonstrates that an alternative theory or therapeutic approach is misguided, and thinking in the box discourages the research that might someday fully justify alternative approaches, now only justified by the unacceptable statement that "its works with many children". In fact, modern medicine has a fixation on finding a label for a disorder that meets with professional approval, and then using the one drug/one target approach, and then adding more drugs if this fails. So-called novel and emerging treatments (read alternative) generally prompt studies that examine just one intervention such as chelation, a vitamin or mineral, or rarely a combination of two such as vitamin B6 and magnesium. Generally the conclusion is that the single item intervention has little merit.15 In addition, the only therapies that stand a chance of regulatory approval must provide pharmaceutical companies with the hope of large enough profits to justify clinical studies. While there will no doubt be government-sponsored trials, the necessity of thinking inside the box to get funding is a severe impediment to progress.
The remainder of this review will explore an alternative view, one that offers hope, comprehensive treatment directed at suspected causes, and anecdotal evidence of great success in many cases. We will take as a guide the work and extensive experience of Dr. Jacquelyn McCandless,2 Dr. Natasha Campbell-McBride,10 and the doctors that follow the principles of "Defeat Autism Now". Some members of Defeat Autism Now! (DAN!) are in fact parents of autistic children who are also physicians. Given what mainstream medicine has to offer, one might simply ask, what is there to loose in trying an alternative approach, especially if the risk are minor or absent and the anecdotal evidence suggests great merit. Alternative approaches, incidentally, have been promoted on the internet and are already rather widely used, and probably misused as well. The greatest success appears to involve what some call The Whole System Approach which is fundamental to the way the DAN! protocol works.
WHOLE SYSTEM, BIOMEDICAL APPROACH TO TREATMENT OF AUTISM
The protocol to be discussed is also called the biomedical approach which views the patient as a whole system with the potential for multiple areas of dysfunction causing the disorder being treated. In an editorial in the November/December 2008 issue of Alternative Therapies in Health and Medicine, Dr. Mark Hyman nicely sums up the case for the whole system, approach to the treatment of autism. His view of autism is similar to that outlined above if one views the suggested causes as targets for therapy.
The broken brain of autism is caused by a broken body. Fix the body and the brain can recover -- the roots of the biochemical disasters and metabolic dysfunction are the same [for chronic diseases] - genetic predispositions (rather than determinants), a toxic environment, and a nutrient deficient diet. In the case of autism, the effects of these insults are magnified by over use of medications such as antibiotics and vaccination, which increase susceptibility to infections and promote allergy and autoimmunity. What has emerged is the extraordinary insight that autism is a complex, multisystem disorder rooted in a series of toxic, infectious and allergic insults.16
The whole system approach to treating autism generally starts with a search for evidence of specific dysfunctions. This is followed by correcting problems identified in an order found to be most productive of benefit. Once the problems are treated and eliminated, the normal result is a dramatic decline in symptoms, in some cases to the point where the diagnosis of autism is no longer appropriate. Those who apply this protocol almost always find evidence that autism is a disease with multiple triggers. Eliminating one problem can produce a dramatic improvement in one child but have little impact in another. Furthermore, the tests for dysfunction are not perfect, and some physicians will use a mixture of treating test-based indications and also using a set of interventions that almost always produce results, and then modifying the protocol on the basis of results. Dr. McCandless summarizes her experience in her book. She and many other physicians she knows who treat autism find that almost all children improve when several goals are all achieved: (1) healing of their inflamed digestive systems takes place; (2) strengthening their immune systems is accomplished; and (3) toxins and heavy metals and toxins are removed from their bodies.
THE BIOMEDICAL PROFILE
Allergy and Autoimmunity
Mitochondrial Dysfunction and Oxidative Stress
Toxicity and Impaired Detoxification
The above is provided to illustrate the detail needed when optimizing the search for system dysfunction. These test look for dysfunction of the body's ability to detoxify or to properly carry out various metabolic processes, levels of critical nutrients, and indicators of oxidative stress. The dysfunctions and deficiencies of interest in these tests are frequently found in autistic children. In Dr. McCandless's book there is a similar protocol.2 McCandless emphasizes the importance of using appropriate laboratories and of course the results need expert evaluation. Physicians aligned with Defeat Autism Now! use similar protocols.
GASTROINTESTINAL HEALING, THE FIRST THERAPEUTIC STEP
Impaired gut function can be due to the unavailability of breast feeding, persistent colic in infancy, frequent use of antibiotics, certain immunizations, and the inability to detoxify environmental toxins. Dysfunctions resulting from fungal, bacterial and parasite overgrowth, the leaky gut syndrome, maldigestion, inflammation, and impaired liver detoxification are also frequently seen in autistic children. Since 60-70% of the immune system is in the intestinal tract and digestive organs, gut dysfunction can also result in impaired immunity.
The view that there is a direct connection between the gut and autism rather than the reverse where a brain disease is causing the gut problems is a subject of debate. If this were a one-way causality, then it would be surprising if therapeutic interventions directed at gut problems would eliminate the primary causative factor postulated to be a diseased brain. However, there seems little point is waiting while this is resolved when the success of gastrointestinal healing appears beyond doubt.
Three primary dietary culprits have been identified, gluten, casein and soy - independent of the state of understanding of the mechanisms. To quote McCandless:
"Regardless of theories, clinical experience of many DAN! physicians has identified the GF/CF/SF [gluten, casein and soy free] diet as the single most effective action you can take on your own to begin to help your child."2
This statement is based on physician and parental observations and the common result is improved mental focus and capacity to learn, better eye contact and more normal inter-personal interactions. Only recently has soy been a general target, but McCandless reports improved results when all three culprits are simultaneously eliminated. Furthermore, progress can be in spurts. Casein is eliminated rapidly from the body when consumption is stopped, which may account for the rapid improvement sometimes seen, but for gluten the process is slower. In addition, to achieve satisfactory results, other foods where hypersensitivity is indicated by the IgG food sensitivity test may need to be eliminated. Incidentally, casein is not considered a dairy product, and thus foods marked "non-dairy" may still contain casein. On the CF diet, also avoid any food where the label lists sodium caseinate.
It is important to realize that the laboratory testing is not perfect and that independent of the test results, the GF/CF/SF diet should, according to McCandless, be the first step, followed by eliminating foods indicated by the IgG hypersensitivity test. Furthermore, McCandless, on the basis of years of treating autistic children, finds that gut healing has to come first and that this cannot take place if foods not being properly absorbed and digested are maintaining an inflamed gut. The clinical experience of those involved in the whole system alternative approach underscores the observation that multiple factors are involved and all need to addresses. If there is uncertainty as to the importance of some factor, say soy, it is best to assume it is important rather than finding this out late in the therapeutic process.
Instituting a GF/CF/SF diet can be challenging. Children with autism are in fact characterized by narrow food choices (mostly bad). Another barrier to be surmounted is finding substitutes that will be accepted. The website Autism Network for Dietary Intervention is devoted to helping families start and maintain GF/CF/SF diets.
Adjuncts to the restricted diet program are also important. These include broad spectrum digestive enzymes, a probiotics preparation containing a variety of "good" bacteria, and a multivitamin and mineral product without copper. McCandless suggests the multivitamin include B6, 50 mg/day, vitamin C, 100-1000 mg/day in divided doses, and calcium, 500-1000 mg/day.
The above initial treatment for autism can be carried out by some parents without help from a physician. Of course laboratory tests require physician intervention, and it seems highly desirable that the child enter a program supervised by a physician experienced in the biomedical intervention. This becomes essential when it is necessary to employ gastrointestinal healing procedures that can only be done by a physician. A huge problem exists since many physicians discourage anything but the conventional, mainstream approach described above. The ideal solution is to find a physician qualified and experienced in biomedical protocols for autism.
Treatments requiring physician participation include dealing with fungal colonization and severe colonization of the gut due to the bacterium Clostridium. A prescription anti-fungal may be indicated, although there are effective natural anti-fungals such as grape seed extract, oregano and garlic extracts. There are other special issues associated with gastrointestinal healing which also strongly benefit from help provided by a physician.
SPECIFIC CARBOHYDRATE DIET FOR GASTROINTESTINAL HEALING
Some children do not respond to the GF/CF/SF diet. An additional option is called the Specific Carbohydrate Diet (SCD) first proposed in the 1950s to treat celiac disease.17 The connection with the autism-gut-carbohydrate metabolism dysfunction was made once it was realized that the over-stimulation of intestinal flora and the attendant intestinal damage could be viewed as similar to the problems induced by gluten, casein or soy.18 The SCD was originally intended for the treatment of Crohn's disease, ulcerative colitis, celiac disease and Irritable Bowel Syndrome (IBS). The solution was a diet where the carbohydrate content was carefully selected to be strictly grain-free, lactose-free, and sucrose free. This severe limitation of the availability of carbohydrates to intestinal bacteria impacts the formation of acids and toxins which can injure the small intestine. The dietary details are fully explained in the book Breaking the Vicious Cycle by Elaine Gottschall.19 The transition from the GF/CF/SF diet to the SCD has been reported to produce generally good and some exceptional results in autistic children.2,19 A website is available with up-to-date information concerning SCD, research links, news and the allowed foods.20
As might be expected, there is a striking lack of enthusiasm evident in the peer-reviewed literature because the standards of evidence based medicine are not met by either this intervention for autism or the gastrointestinal healing protocol used by McCandless and other DAN! physicians.21,22 In fact, the dietary approach to gastrointestinal healing in children with autism does not easily fit into the clinical trial protocols, given that highly individualized and to some extent trial-and-error treatment is required and other issues than diet frequently must also be addressed. However, many parents acting only on anecdotal evidence have observed remarkable results, but these will rarely if ever never make it into the peer-reviewed literature due to the low level of respect for this type of evidence.
Correcting these deficiencies is important since these nutrients are required as part of the diet needed to reduce gastrointestinal inflammation. However, there are multiple problems. Young children have trouble taking capsules and pills. The dose depends on body weight. Tests will reveal which of these micronutrients are low, but some parents resist testing which leaves little alternative but to administer a mixture. Some children also take time to adjust to an adequate dose. Finally, mainstream medicine is quick to point out that this intervention is not evidence-based but that is easily explained by the type of randomized controlled studies favoured which look at only one component.15
There are companies which provide vitamin and mineral supplements specifically designed for ASD children which resolve some of the problems of dose and administration. These include Klaire Labs, Ecological formulas, VRP (Vitamin Research Products), and Thorne Research, all of which have websites.
Response to micronutrient supplementation can be quite rapid and dramatic. Supplementation is emerging as an increasingly important means of treating autism and should be considered as an integral component of the biomedical approach, according to the experience of physicians who add this to their protocol.
REMOVING HEAVY METALS
Removal of heavy metals in autistic children is accomplished by what is called chelation, which involves using a chemical that tightly binds the metal and the metal is then excreted in urine or via stool. Chelation has a long and controversial history well documented in a number of books.23,24 Ethylene diamine tetraacetic acid (EDTA) is the classical chelator but is FDA approved only to treat lead poisoning. The success of this type of intervention can be followed by simply examining what is excreted. Since chelation also removes desirable minerals, it is routine to replace these with supplementation and to monitor for induced deficiencies. Chelating agents are capable of removing metals from deep tissue reservoirs but in general do not cross the blood-brain barrier. Thus removal of heavy metals from the brain must involve redistribution to where they can be captured.
An Autism Research Institute (DAN!) consensus protocol regarding heavy metal detoxification is followed by many physicians using alternative treatments for autism.25 The chelator of choice is DSMA, which can be used orally or via a suppository. Transdermal DMSA is not recommended. Phase One involves determining dosage and timing followed by laboratory monitoring to track the metal removal and to check for adverse reactions and mineral status. Phase Two involves adding alpha-lipoic acid (ALA) when little or no more mercury is being excreted. Laboratory monitoring is used to track the additional metal removal caused by the addition of ALA. The process is completed when the child has plateaued and is no longer showing obvious changes in behavior and language. For some ASD children, the improvement at this stage is such that the child can return to the normal school environment and many no longer have the autism diagnosis. McCandless discusses variations on this protocol, reasons for lack of response, and what options then exist.2
It is clear that it is necessary to carry out this detoxification phase under the direction and supervision of someone experience and qualified in using the protocol.
ADDRESSING AUTOIMMUNITY, IMMUNITY AND VIRUSES
The contrast between the multiple interventions being used by the DAN! physicians and the dismal future for the autistic child based on the mainstream view and approach is extreme. Devotees to evidence-based medicine believe that many of these interventions, being untested by controlled clinical trials for safety and efficacy, should not be used until the proper scientific basis has been established. This is inconsistent with the widespread use off-label of unapproved psychiatric drugs to treat autistic children. Realistic parents and physicians open to alternative treatments would probably simply point out that they are unwilling to wait, do not regard the trials as necessary, believe that some trials being demanded cannot be done because the problem is one of the whole system and testing one particular therapeutic intervention at a time makes no sense. Also, the earlier the issues concerning the autistic child are addressed, the better the chances are of success in reversing or curing the syndrome.
Consider a randomized trial where half of the autistic children are provided with the alternative protocol outlined above and the other half receive psychiatric and special educational help and have their symptoms treated with powerful, unapproved psychiatric drugs which will have no impact on any of the aspects of the disease being treated by the alternative approach. Informed consent would involve providing the all the parents with information regarding the alternative approach. Once parents are aware that an approach to treating autism exists which has had, by any measure, phenomenal success, why would they agree to allow their child to be randomized with the risk of being in the conventional treatment group which clearly has by comparison a vastly smaller impact?