Max and Sandra Desorgher
World Community Autism Program, directed by Max and Sandra Desorgher, was founded in 2002, but our work towards understanding a biological basis of autism started in 1994 when Sandra’s adopted daughter, Sara, made a remarkable recovery. Her early evaluations identified severe delay disorder at age twenty months. At twenty two months Sara suffered additional insults when she stopped breathing, turned blue and developed uncontrollable seizures the day after she received her DPT and MMR vaccinations. At age two she entered special education which was followed-up with evaluations at age five that revealed autism, severe hyperactivity, self injurious behavior, no verbal language use and severe delay disorder. Sara was functioning in the severely delayed range. Sara was placed into Sandra’s care at age five through Professional Parenting therapeutic foster care and cleared for adoption at age eleven. Adoption Plus formalized the adoption of Sara at age eleven and Sara was then placed on a diet which eliminated lutein (a natural food pigment). Sara developed verbal speech within weeks. Sara went on to be mainstreamed to regular education and she achieved academic excellence and she was accepted into National Junior Beta Honor Society. Sara was declassified from her diagnosis of autism by The Marcus Center in Atlanta Georgia at age fifteen.
A long time before Sandra published Sara’s response to dietary intervention on the internet, discoveries were made that pointed to a biological basis of autism. These included the work of Dr. Bernard Rimland of Autism Research Institute, whose work and reviews of published studies on vitamins showed that there was something unusual in the way these children utilized nutrients. Three immunologists, Dr. Reed Warren, Dr. Vijendra Singh and Dr. Hugh Fudenberg reported on immune system findings. In the mid 90’s researchers in Europe (University of Sunderland) made profound discoveries: the urine samples of autistic children showed elevations in certain chemicals and the origin of these chemicals are thought to be the dietary proteins casein and gluten/gliadin found in dairy and some grain foods. This furthered the interest in diet as it relates to autism which had been gaining attention through the concerted effort of Dr. Kalle Reichelt. Dr. Rosemary Waring identified Phenolsulphotransferase-P enzyme deficiency. Another breakthrough was the discovery by Dr. William Shaw of unusual yeast metabolites in urine samples. Other findings have included brain differences (Bauman, Hashimoto), the discovery of gastrointestinal lesions by Dr. Andrew Wakefield and those of Dr. William Walsh reporting on more phosphotransferase deficiency discoveries, the metallothionine enzyme dysfunction.
When Sandra Johnson (Desorgher) revealed the story of Sara’s recovery on the internet, there was already a growing band of people who were taking the biological approach seriously and applying dietary changes, using supplements, enzymes and anti-yeast treatments. Doctors, parents and researchers were finding ways to treat autism and sometimes the treatments resulted in improvements and even reported recoveries. In 1994 Dr. Rimland again published information that included his opinion that autism was a condition from which some people could improve or recover and maybe there would remain some signs or symptoms but for some the devastating impact of this syndrome could be reduced to quirky or odd behaviors and children or people with autism who were provided with ample and timely intervention could have a far better outcome than in the past when no treatment options were identified. Dr. Rimland recently released his opinion paper that autism is likely caused by vaccination. This forward move by one of the most well respected leaders of the autism community comes at a time when the human population is being forced to take a stand on vaccination issues. Congressional hearings are taking place in the USA surrounding SV40 vaccine contamination, autism, SIDS deaths, Shaken Baby Syndrome and the lack of scientific evidence towards supporting that vaccines are safe and effective. Indeed much evidence to the contrary has been brought to the public view. This controversy has led to speculation that the best prevention may lie in NOT vaccinating. If nothing else it reveals science and medicine have failed to produce adequate methods of identifying the ‘at risk’ infants for whom vaccination should be delayed or suspended. No one can argue reasonably that giving Hepatitis B vaccines to neonates is the best scientific or medical course of action for a population which is NOT at risk for developing Hepatitis and for whom a vaccine reaction can result in a lifetime of serious disabilities or cause the death of the infant.
Complicating the vaccine controversy issue is the reported similarity of vaccine related deaths, SIDS deaths and Shaken Baby Syndrome deaths. Add this information to the known similarities between children who are identified and reported to have suffered from vaccine reactions and their presentation. Vaccine injured individuals generally have similar and in some instances identical presentation to many who are diagnosed with autism of unknown origin. Findings which are being reported disclosing measles virus known to be of vaccine origin in the guts and brains of children with autism, immune phenomena identical to immune phenomena which is a reported outcome of immunogenetic changes as a result of mass vaccination, increased frequency of autism in families where first and second degree relatives present with the condition and the correlation of autoimmune disease to vaccine research and molecular biology research identifying susceptible populations to disease presentation attributed to mass vaccination.
Treatments have been developed and the results are sometimes making headlines. IVIG (Singh), transfer factor (Fudenberg), and therapies developed based on the long term classification of autism as a behavioral disorder which have come to be known as ABA (applied behavioral analysis) introduced by Dr. Ivar Lovaas. Immunology and the relationship of the immune system response to pathogens such as bacteria, viruses and food substances lead to more theories and more treatment options including those offered by doctors Michael Goldberg and C. A. Kotsanis. Signs and symptoms are being recognized as treatable and new therapies have been made available such as Auditory Integration Training (Berard and Tomatis) and Irlen lenses for Scotopic Sensitivity Syndrome.
Some doctors began to accept, include and recommend the most cost effective and least invasive therapies including use of restricted diets. Some parents and doctors followed Sandra’s advice and removed lutein from their child’s or patient’s diets who had autism. Some followed the GFCF diet approach. Allergy Induced Autism and the Feingold association linked by the salicylate/phenol connection began also to find ways of sharing information. New diets have been introduced from yeast free to removal of carbohydrates and more will likely come along.
Parents once faced with no treatment options are now fighting for a multitude of therapies and services for their children. Often they are overwhelmed by the massive amount of information on diet and at the same time they find themselves parenting children who are often very picky eaters, called children with ‘faddy’ diets by some. Product manufacturers wanting to cash in on the diet frenzy promote products but rarely is there research provided to support the claims being made. When the research is done often it is ignored. Parents and most doctors have no real knowledge of diet and nutrition. Medical doctors are asking for and demanding training now so that they can identify and collaborate on the treatment of their patients.
Experts in the field of autism, being relied upon by the government and elite health organizations, are very often people from the field of psychology. Many achieved their rank among the experts when it was generally accepted that no known treatment options were available and autism was still a rare condition. Research has been and continues towards identifying a genetic cause which has been assumed by some must be the basis for the signs and symptoms of autism. The Medical Research Council, UK review of autism reported their findings that perhaps five percent and not more than ten percent of people with autism have an identifiable genetic contributing or causal factor. Interesting also is that each of the conditions identified in the genetic studies had already been identified as a known co-occurring condition including but not exclusive to Fragile X, Turner Syndrome, Tuberose Sclerosis and Phenylketonuria before the massive amount of genetic research was undertaken.
Currently autism has been accepted to have a bio-medical basis (Frith). Behaviors, once called sterotypies, are now called ‘coping skills’. Some of the activities described as behaviors for some people with autism include finger flicking (fingers moved rapidly in front of the eyes), tapping and repetitive tapping, echolalia and listening to audio material over and over and making certain sounds repeatedly. Interesting also is the research on Eye Movement Desensitization and Reprocessing (EMDR). EMDR called also ‘Finger-flash’ therapy is said to be a treatment for some people who have experienced trauma or who have stress disorders such as Post Traumatic Stress Disorder (PTSD). Is autism a stress disorder? Have some people with autism been providing their own version of ‘Finger-flash’ therapy?
Still it has taken science a long time to begin to recognize the relationship of signs, symptoms and characteristics to the biochemical and immunological factors contributing to presentation. In the recent past, 1940’s, conditions such as Pellagra were identified with neurological and psychiatric presentation and were found to be caused by nutrient deficiencies. Pellagra resulted in signs and symptoms which are not unlike those reported for some people with an autism spectrum diagnosis. Research, manufacture and production of pharmaceuticals and the substantial profit potential for new drugs pushed use of diet related therapies into a class called ‘fringe medicine’ by some. Medical doctors have not been provided training in nutrition studies.
Still there is no consensus as to whether autism is neurological, genetic, immune, bio-medical or a combination such as immuno-genetic (IoGc), neuro-gastro-immune. It is recognized that there are many consistent laboratory findings which have been identified and these consistencies could or should result in a test or tests which could be used to confirm, substantiate or lend credence to a diagnosis which is currently based solely on behavioral criteria. Substantial information has been gathered, reported, published and still the experts seek funding for more genetic research. Many parents of autistic children and vaccine injured children believe the rational for this genetic research is to find regions which can be identified through chorionic villous sampling or amniocentesis so that an ‘at risk’ fetus could be recommended for termination. Indeed autism has been associated to Aarskogg syndrome and genetic counselors have been given the research which suggests termination for specific findings which seem to be growing rapidly. The rate of increase in identified susceptible regions which result in recommendation for pregnancy termination is not disclosed to the general population.
In the recent past C4B null allele was associated to people who might develop immune system diseases at some time in their lives and NOT a justification to recommend termination. Increasing prevalence of conditions which can be more severe and affect humans in infancy and early childhood such as Congenital Adrenal Hyperplasia and autism are now linked to this region. This can result in increased pressure on genetic counselors to recommend pregnancy termination. Some genetic differences result in very variable outcomes. Chromosome region 15q11-13 has been associated to Angelman’s syndrome, Prader-Willi syndrome, autism and also genius. It is accepted that people present with any and all of these syndromes for whom the 15q error cannot be found and also people who present with the error and for whom no signs or symptoms can be found. Research is moving into areas called epi-genetics where microDNA are being identified, named and associated to diseases and syndromes. The evidence is mounting which suggests that genetic errors are only part of the causal factors and environment, sex, age and additional insults or injuries can alter the outcome for any individual. We are each unique. How many pregnancies are being terminated and are the recommendations always justified?
Until there is a medical test or tests which can be used to substantiate an autism diagnosis the participants in studies may or may not have autism. Many people with certain and sometimes unidentified inborn errors or genetic conditions can present with the signs and symptoms currently used to diagnose autism. The inborn error of metabolism or genetic condition may or may not be identified. Individuals with blindness, deafness or a combination of injuries, insults or illnesses often will meet the criteria for an autism spectrum diagnosis. Is there one form of autism or many? Is there a causal factor or many? We can argue for and against theories but currently no one has all the answers. Important also is that when infants die from vaccine injury and sudden infant death syndrome there is currently no way to know how many of these infants would have developed the signs and symptoms of autism. It is also currently impossible to determine how many spontaneously aborted fetuses would have been at risk for developing the signs and symptoms of autism. Even though autism has been included in Aarskogg syndrome and is now identified as a risk for Chromosome 6-pter deletion no one really knows what percentage of infants with this deletion will present with Turner syndrome, deafness, autism or no recognizable signs and symptoms.
Much of the research funding comes from the pharmaceutical industry, government and big business. Nearly every dollar spent on research goes right back into the pockets of people working in these sectors. The pharmaceutical companies are under no obligation to publish their research findings, they own the information. Research which is undertaken by the government, such as that which is contracted to or originates in the military sector, is often classified. We are now living in an age when information is at our fingertips. People who have previously worked in these sectors know where to look for information and many are no longer bound by the constraints of their former jobs. Some of these people, including doctors, are speaking out. Quickly those with vested interests in pharmaceuticals, research and profits move to answer the charges of these individuals and in doing so they tend to label these individuals as ‘loose cannons’, ‘pseudo scientists’ and fanatics.
Autism researchers from fields as diverse as gastroenterology, virology, immunology, genetics, endocrinology, allopathic medicine and alternative or natural medicine are coming together with parents of children with disabilities and finding evidence for common causal factors. The theories thus far which are the most publicized include vaccine injury, birth trauma, inborn errors of metabolism, genetic and genetic predisposition. The theories are moving closer and closer together as parents, philanthropists and researchers take on the task of elucidating the cause or causes of autism based on their determination to learn the truth about the new epidemics and pandemics facing all of humanity.
Current opinion on the use of early childhood behavioral intervention for treating autism reveals ‘there is still no one approach that meets accepted criteria for an empirically validated treatment.’ (Baker, Feinfield ) This can be said for any or all of the treatments and therapies currently being used for treating autism. However, there is no shortage of interest in developing new pharmaceuticals for treating autism or finding new uses for some that already exist. Experts continue to argue as to whether or not increased numbers of persons diagnosed with autism over the past decade, now reaching 1 in 150 individuals in the USA and with the reported rise equalling to an estimated 700 plus increase, is real or imagined. The pharmaceutical giants don’t seem to be hesitant about accepting the figure and planning towards a ‘target market’ (Physiol Behav, August 1, 2003; J Gerlai and R Gerlai). From this article we can surmise that Eli Lily is going to be a frontrunner in more human drug research directed at finding pharmaceuticals which can be used to treat people with an autism spectrum diagnosis. Will the drugs treat the cause or just the symptoms?
Treatment options such as dietary intervention are all recommending removal of non-food stuffs from the diet, non-food stuffs which have been approved by the FDA and allowed to adulterate our food supply for a century. However, the natural food substances reported to result in problems for some, many or most people with autism are being found to have more and more in common as pigments such as xanthophylls are found to be bound to some grains and dairy protein (carotenoproteins) are often the pigments in what some refer to as 'yeasty fruits' and avoided by many autists who simply refuse to eat colored fruits and vegetables. The red pigments found in shell fish which is often the cause of allergic reaction is also one of the carotenoid pigments identified by us as central to an understanding of the biological basis of autism.
Of the first 1000 individuals who received the ‘Sara’s Diet Protocol’, about 100 reports of full recovery came back, and hundreds that made remarkable gains. By recovery, we mean that, after implementing the diet for as little as 14 days and up to 6 months all signs of autism were gone. The individuals are NOT cured, in order to remain symptom free, they must remain on a controlled diet. No other diet program has demonstrated this level of success.
After being unable to get grant funding for a diet protocol study requested from NIH we began to travel to other countries, such as India, Dubai, and Scotland, where we found more openness to our discovery, and we continued to see the same pattern of recovery and improvement. We then wrote ‘The Power of Exile. Autism, a journey to recovery.’ In 2002 we were invited to Malaysia by the leading autism support group in that country after the daughter of one of the doctors on their team made significant gains. Our first conference in Malaysia was attended by 500 parents, doctors and specialists eager to learn about the lutein-free diet. We gave individualized dietary consultations for more than 100 families in Malaysia between June 2002 and May 2003, and again we saw a 10% recovery rate and almost all children showed some measure of improvement. Many of these were already using GFCF, 'yeast-free' diets, behavioral therapy, enzymes, supplements etc. After returning from Malaysia the second time, we wrote our second book ‘Autism, the way forward’, which includes full details of our dietary approach, as well as new perspectives on complex behavior, sensory problems and social issues. The book is available as an e-book through our website http://www.saras-autism-diet.freeservers.com/
There are many theories which have been put forward to link together the biological evidence, including the ‘opioid excess theory’. In this theory, undigested protein fragments cross the gut lining which has been damaged by vaccination, food intolerance, food allergy or disease and then enter the brain as 'opioids', causing havoc with nerve signals and hormones. Some parents report that the child is developing perfectly normally until an adverse reaction to a vaccine causes damage to the brain and the gut. Research findings of measles virus in the brain and the gut, as well as parent reports that their child regressed soon after a vaccine suggests strongly that something has gone wrong during routine vaccination. Others point to toxic substances that come in with the vaccines, such as mercury (thimerisol). Some researchers believe that autism is an auto-immune disease, that brain cells are being attacked by the body’s own immune system. Some are convinced it is genetic as findings reveal multiple instances in some families.
What about allergies? Are these immune, genetic or immunogenetic? Multiple incidents of allergy also occur in families. There is the potential for offspring to be allergic to substances to which a parent or grandparent is allergic, such as pollen, penicillin or bee sting. But, we can be allergic to these even if our parents and grandparents are not allergic, and just because a parent or grandparent has an allergy this doesn’t mean the offspring will also have the allergy. The immune system is always adapting to changing environmental pressures. The areas of our genetics where these changes take place are called hypervariable regions. These areas demonstrate the relationship between diet, environment, toxins, genetics, pigments and the immune system. These are the areas that are found to be altered in populations affected with the so-called 'diseases of civilization', including diabetes, arthritis and autism.
We believe that in conditions such as autism, the immune system is altered in the womb, as information from both parents come together and the fetus makes a choice as to what substances are ‘non-self’ and how to evolve to meet the challenges it expects to meet in the stress-filled environment outside the womb. The immune system is reported as continuing to develop and mature through age three, leaving plenty of opportunity for new choices as it encounters the many dangers and challenges of the real world. Information obtained from families with offspring on the autism spectrum might include that one or both parents suffer from diseases such as diabetes, celiac disease, cancer and arthritis – diseases which involve alterations in the way the immune system works. It might include that the parents come from very different ancestral backgrounds, and that their genetics come together in ways that make for an unusual relationship to pigmentation and food as well as susceptibility to diseases, disorders or conditions common to the ancestry of either or both parents. We see this in conditions such as vitiligo and hypomelanosis of Ito which co-occur with autism. It might also include information about how the parent’s immune system reacted or changed in response to vaccination, insults and injuries received prior to conceiving offspring. Alterations in the immune system is seen in the high frequency of auto-immune disease in parents of autistic children. It is also seen in alterations in genes that control the immune system. One of these is known as the C4B-null allele and is found not only in autists but in families with auto-immune diseases and families with a high rate of miscarriage.
The adaptability of the immune system is essential to survival of the species. As environmental pressures increase, it is only natural that the immune system will adapt and find new ways to respond to those pressures. We believe that one of those ways is the selection of lutein by the immune system. Xanthophyllic pigment such as lutein is contained inside structures called chloroplasts or plastids. These structures are found in agarose gel and egg yolk. Both substances have been used as the primary culture mediums for vaccines since about 1929. Viruses are known to incorporate DNA and alter their structure. The DNA associated with xanthophyll would be the plastid and chloroplast DNA that would be present in vaccines cultured in agorose gel and egg yolk. This alteration of the virus is called mutation. As mass vaccination became more and more prevalent, the human immune system was faced with pathogens coming into the body together with other substances contained in the vaccines, viral pathogens along with the structures which had only previously been associated with plant food energy. Preservatives, dyes, phenols and many other known poisons are used in the manufacture of vaccines. Like a Trojan horse the vaccines have delivered enemies that altered our human immune system. As the selection occurs of non-self substance in the womb it leads to changes in our genetics, pigmentation, eyes, the brain, hormones and endocrine system. Molecular biologists are revealing findings that changes in the human genome can be identified and measured and that some of the changes can be directly associated to diseases which include diabetes, cancer, arthritis, spontaneous abortion and immune phenomena. Research into the manufacture and development of new vaccines reveal findings which associate autoimmune phenomena and disease to vaccine chaperones used as vaccine carriers called heat shock proteins (Max Planck). The warnings have come after a century where this type of vaccine chaperone has been included in the process of vaccine manufacturing before the ‘risk’ was known.
We believe that the changes may be more severe in girls because of the role of lutein in the ovulation cycle, and that female fetuses are more likely not to survive, leading to or contributing to the unusual male-female ratio. The changes are not always obvious in the newborn but manifest as lutein builds up in the diet during infancy and early childhood. The altered immune system is more likely to have an exaggerated or unusual response to vaccine and early childhood illnesses. This may be exacerbated by diet and other environmental factors. If it is possible to recover it is also possible that some people have this immune-genetic condition and do not present with typical signs or symptoms. Some may avoid having symptoms as they recognize foods that cause symptoms in infancy and early childhood and grow up just to be people who are picky eaters. Some may be spared developing signs and symptoms as they remain unvaccinated and do not suffer from additional insults or injuries such as birth trauma, illness or have predisposing genetic factors.
After working with more than 2500 families around the world it appears that those who have no family history of autoimmune disease and who are not of diverse ancestry often have the mildest presentation and also best chance of recovery. Those diagnosed with autism who have a family history which includes many autoimmune diseases and who are also from diverse ancestry appear to have the most severe presentation.
The immune response to lutein is unusual in that it doesn’t show up on an allergy test. This is because it is a chemical structure, little more than a vibration, and not a protein. The response is similar to a reaction to a poison such as cobra venom. Immune system macrophages engulf the pigment and remove it from the body. At the same time, it sets off a chain reaction including shutting down normal digestive processes as the immune system takes control. The reactions can alter the way enzymes work and result in unusual chemicals and compounds building up inside the body. It switches the hormonal balance towards ‘fight-or-flight’ and away from the ‘molecules of emotion’. Chemical reactions which should make us feel relaxed, satiated and ready to be sociable are inhibited as chemicals which make us feel anxious, afraid and vulnerable are elevated. If this was a one-off reaction, we would soon recover, but one reaction to lutein may last several days, and lutein is entering the diet on a daily basis in most households, so the reaction is continual, the immune system never turns off, and the emotional system cannot turn on. This is reflected in a structure in the brain called the amygdala, which is part of the limbic system - the mammalian center of emotional, learning and language development. The Amygdala responds to the adrenal reaction, and puts a hold on social interaction, language and emotional development until the immune response is turned off.
When we remove lutein from the diet, as well as providing all essential nutrients based on individual needs, we often see the first signs of change after 12 days. We usually have to wait up to four months to see the emotional awakening that we are looking for. This is followed by increased socialization, language, improved behavior as well as a reduction in yeast related symptoms, bowel problems and skin eruptions, improvement in appetite, a willingness to experiment more, and above all a happier disposition.
The individual nature of autism is reflected in individual needs. Some require a removal of gluten and/or casein, and many benefit from this approach even if it is not required. We usually take out wheat (some wheat also contains lutein such as spelt and semolina varieties), and dairy that is high in casein and carotenoproteins, but do not believe that it is always necessary to remove oats, whey, butter (pure), cream cheese and cereals such as barley or foods containing barley malt. Many do need to have soy protein removed, and we always recommend removal of non food stuff especially food dyes and aspartame. This is a diverse population, as diverse as the human race itself. There is a higher rate of celiac disease and often a strict gluten free diet is needed. For others ensuring the dietary precursors for producing enzymes that break down substances such as gluten and casein is all that is needed. And, for others support with digestive enzymes appears to be the best course of action.
Understanding the biological basis of autism is moving forward, and we believe that, as this information filters through to the medical community, family doctors will take over from psychologists as the first port of call for parents with a child diagnosed as autistic. If parents are going to trust the medical community then the medical community must hold itself accountable to reveal the truth about the dangers of drugs, vaccines and medical treatments. Often people will make a choice to accept a medical treatment even if the treatment only has a slight chance of producing a positive outcome. People are accustomed to taking risks but it is only fair that we be given the facts so that we can make an informed choice. We also expect our medical professionals to be educated and also given the facts so that they too can make informed decisions which are not based on profits for the pharmaceutical industry or which involve hidden agendas of research, government and military organizations.
Understanding autism is still a goal and not a reality. Until we challenge the medical community and research organizations to produce the unpublished material which remains hidden from peer review because it doesn't support their agendas, the established medical community and research organizations will continue to pursue their own agendas and ride the pharmaceutical gravy train. We cannot continue to expect that taxpayers will allow their elected representatives to spend our money on endless research and receive nothing in return but more and more drugs. We cannot expect consumers to continue to purchase products which have been pushed onto the market with inadequate research, unscrupulous research or which are promoted using ghost writers, advertising companies and solicitors with bogus credentials.
The world, the educated, the disabled, the parents of damaged and dead babies, those incarcerated unjustly, convicted for crimes which are now being recognized as medical negligence are demanding accountability. With great sacrifices we are capable of great discoveries. We are capable of identifying the causes and treatments for autism and renaming this condition as it relates to the causal factors and providing treatments which result in improvements. Those who only need diet and environmental accommodation, those who need antiviral therapy and blood cleansing treatments, those who need immune therapies and more expensive and invasive treatments, those who need a combination of therapies. If we can help one percent to reach recovery then the sacrifice is worth the revelation. Ten percent a joyous result. Fifty percent recovery in the autism population and the diagnosis in utero would result in many choosing not to abort, a joyous triumph for those who believe that life is worth preserving.
From those who improve and recover we can learn more about the needs of those who do not recover, who have experienced too many insults and have too many contributing factors. We can learn how better to accommodate them, how to meet their needs, how and when to provide services and when also to leave them alone and just love them, accept them and care for them.