The 2008 Defeat Autism Now! Conference: An Overview

By Michelle Gabrielle Centamore

The 2008 Defeat Autism Now! Conference took place at the Crowne Plaza Hotel April 3 to April 6 in Cherry Hill, NJ. The conference featured a series of lectures led by leading experts in the field of autism research and treatment. Speakers discussed topics ranging from the possible causes of autism including vaccines and other environmental triggers, to common gastrointestinal symptoms experienced by individuals on the autism spectrum to some of the most effective treatments used collaboratively by doctors, parents and other caregivers to treat children with autism.

Attendants at the DAN! Conference included hundreds of individuals – practitioners, parents and other family members of individuals with autism, therapists and representatives from companies who offer tools, resources, as well as nutritional supplements, etc. to aid in the treatment of autism. Regardless of their views on the cause(s) and treatment of autism, all participants without question were on a common mission: to share and absorb as much information and perspective in order to further advance the healing and recovery of individuals with autism.

What is Defeat Autism Now!?

“Defeat Autism Now! is dedicated to the exploration, evaluation, and dissemination of scientifically documented biomedical interventions for individuals within the autism spectrum, through the collaborative efforts of clinicians, researchers, and parents.”

“Autism is Treatable. Recovery is Happening Now.” This message I found on a bumper magnet and is the epitome of the results of the tremendous amount of hard work, dedication and determination of the many persons who work so hard to fight an epidemic that has turned upside down the lives of thousands of children and their families and stripped them of their natural right to quality of life. Thanks to these bright, passionate and relentless individuals, we have gained more insight as to why autism is so prevalent in our society and most importantly, how we can combat the disorder in a way that is not only most effective but least intrusive on the already fragile systems of individuals with autism.

Does every child with autism experience significant improvement or recovery with the DAN! protocol? Unfortunately, no. As all children are individuals, children with autism vary in symptoms and severity of the disorder and therefore will react differently to various interventions. However, we never know unless we try and if you ask most experts and parents, many will agree that a great number of children with autism who are treated biomedically along with conventional therapy (applied behavior analysis (ABA), etc.) versus strictly the latter will have a greater chance at increased improvement in symptoms - or recovery. Why? Because those who follow the DAN! protocol believe that autism is the result of a series of underlying causes that over time can change the makeup of an individual’s body - brain, gut, etc. – to the point where he or she can no longer effectively and appropriately communicate and function on the same level as their peers. Addressing those underlying symptoms they believe, can drastically alter an autistic individual’s condition and thus, their overall prognosis. In other words, when their bodies begin to heal, they are able to learn more efficiently.

The DAN! approach to defeating autism is comprehensive and while time is certainly of the essence when treating children with autism, many of the speakers present at the DAN! conference suggested parents take a “step by step approach” under the guidance of a trusted and experienced professional. Based on their theories of what triggers autism, as well as to how it affects each part of the body specifically, experts offered their perspective on how to most effectively defeat the symptoms of autism. With that, they offered hope to the children and families who are currently challenged with an autism diagnosis, as well as to those who wish to educate and arm themselves with the tools and resources necessary to avoid the disorder altogether.

Conference Lecture Highlights

In his lecture entitled “Overview of the Defeat Autism Now! Biomedical Approach,” Dr. Jon Panghorn, co-founder of DAN!, raised the question, “How can we get our autistic children back?” According to Panghorn, autism is caused by preexisting weaknesses in the body’s detoxification capacity, antioxidant and methylation capacity; poor nutritional status; and exposure to toxic or infectious stressors. Panghorn stated that approximately five percent of individuals with autism have traits of autism that are inborn and therefore may not experience significant improvement with treatment; however, he contended that when begun in childhood and especially along with conventional therapies such as ABA, speech therapy, occupational therapy, etc., “the DAN! biomedical approach can potentially help about 95 percent of today’s autistic population – those with sub-clinical metabolic problems that have been magnified by acquired stressors.”

Applying the DAN! Biomedical Approach

“You can do it [but] it doesn’t happen overnight,” asserted Panghorn at the conference. The DAN! approach to defeating autism he said requires attention to the system as a whole. Panghorn noted key measures parents and caregivers should consider when treating their child with autism, which include: removing dietary/environmental stressors, such as casein and gluten; improving nutrition with supplements that the child is deficient in, for example, Vitamin B6 and Magnesium; relieving oxidant stress and inflammation; improving broken biochemistry; improving immune function; and detoxification, for example, using chelation therapy to help the body rid itself of heavy metals.

Methylation and Glutathione

According to many of the specialists following the Dan! protocol, glutathione deficiency plays a major role in the symptoms experienced by individuals with autism.

Glutathione helps to defend the body against damage from cigarette smoking, exposure to radiation, cancer chemotherapy, and toxins such as alcohol. As a detoxifier of heavy metals and drugs, it aids in the treatment of blood and liver disorders. It also neutralizes oxygen molecules before they can harm cells.

Symptoms of glutathione deficiency include: coordination problems, mental disorder, tremors, twitching, nervous system disorder, and difficulty in balancing.

Heavy metals interrupt the process of methylation, preventing the body from producing glutathione, which leads to impaired Neuronal Synchronization, also described as autism. It is believed that some children with autism have greater genetic risk factors, which causes methylation interruption to occur at much lower levels of metal exposure. An example of a substance that would interrupt methylation would be thimerosal.

The process of the methylation and detoxification pathways is a highly complex process. Treating children with autism with glutathione to promote detoxification is just one solution to help heal the child’s body but it may very well be a significant one, according to many of the DAN! specialists.

Example of Chelation Therapy

In his lecture entitled the “Safety and Efficacy of Oral DMSA Therapy for Children with Autism,” Dr. James Adams presented the results of a 2-phase study that included the administration of oral DMSA/glutathione therapy on 82 children with autism. 65 of the children completed phase 1, which entailed nine doses over three days, daily doses of glutathione and a urine collection. 42 of the 62 completed phase 2, which meant that their tests revealed that they were excreting high levels of toxic metals.

Challenges that existed throughout the study included loss of essential minerals, which according to Adams, could be countered by providing the children with added nutrition in the form of food and/or supplements, for example, chromium. Some of the children did experience changes in their level of platelets and Adams said that the treatment may have been responsible in some cases for an increase in triglycerides; however, he said, overall, there were no major problems faced by the majority of the children in the study. On the contrary, the study revealed that the participants experienced marked improvement in communication skills, social interaction, play skills, and in reducing stereotypical behaviors.

As chelation therapy is used to excrete metals, in this study, the toxin excreted the most was lead - with tin, mercury and thallium excreted at low levels. According to Adams, lead and antimony may be responsible for approximately 20 – 35 percent of autism severity; however, as noted by many other studies, mercury has also proved responsible for many symptoms and conditions in children with autism. DMSA in this study, had little effect on the excretion of mercury, thus other chelators may be required to excrete it. The study did show that when glutathione increases and more metals are excreted, symptoms of autism improve. According to Adams, while further research and more studies are crucial in determining the overall effectiveness of DMSA/glutathione therapy, oral DMSA therapy is a “safe means to excrete toxic metals.”

In another lecture entitled, “Digestive Disorders, Digestive Aids, and Diet Strategies for ASD,” Panghorn further explored digestive challenges in individuals with autism. According to Panghorn, many individuals with autism lack the ability to effectively digest food molecules. Carbohydrate digestion, for example, is often a major challenge for children with autism. Panghorn explained that lactase, which digests the milk sugar lactose, is the disaccharidase enzyme that is most often weak in individuals with autism. “Pancreatic dysfunction will disable the body’s natural lactase activity,” Panghorn said, so lactase administered in digestive enzyme form may be helpful in treating autism.

“Approximately 60 percent of the population of individuals with autism experience improved symptoms with the use of digestive aids,” said Panghorn. However, before a child is treated with digestive enzymes, Panghorn suggested clearing the child’s body of or more consciously avoiding toxins and other unnatural substances such as food lacking nutritional value i.e. fast food and artificial flavors, etc., cigarette smoke and lawn treatments such as pesticides. Panghorn also stated that digestive enzymes should not be used in place of exclusionary diets.

In the same lecture, certified nutrition consultant Julie Matthews stressed the significance of a healthy gastrointestinal system in helping to improve the symptoms of autism. She said, “If a child feels better, a child can learn better – and be happier.” The gut, she continued, is the link to an individual’s mind and whole body. Among many other positive changes, improving the diet, she explained, may enhance the body’s nutritional status, repair “leaky gut” or increased permeability of the gut wall, prevent or halt yeast overgrowth or candida, improve methylation and sulfation and help the body to detoxify itself.

In an attempt to give families a greater perspective on the success of others who have “tried” dietary intervention, Matthews presented the most popular diets and the percentage of autistic individuals who experienced success while on them.

The Specific Carbohydrate Diet (SCD) takes the lead with a 66 percent improvement rate; 65 percent of those who follow a Gluten Free/Casein Free or the GF/CF diet (a diet that includes the removal of wheat and dairy and according to Matthews is a good “starting point”); 55 percent of those who follow the Feingold Diet, which entails removing synthetic colors, flavors and preservatives, as well as artificial sweeteners from the diet, experience improvement; 55 percent of those who significantly decrease or remove yeast entirely from their diet also typically experience improvement, Matthews said. Other dietary strategies included removing dairy or wheat only and/or reducing sugar intake. Matthews also suggested eliminating any foods the child is sensitive to, such as eggs, corn or citrus.

How to Boost Nutrition

According to Matthews, improving nutrition entails more than the removal of specific food irritants; rather, it entails replenishing the body with food that will enhance the individual’s system and help them to be healthier in general, which she acknowledged, may not be an easy task when children with autism are involved.

There are a number of nutrient-dense foods, said Matthews, which can provide the body with much needed vitamins, etc. that could otherwise be found in nutritional supplements. Sunflower seeds, pistachios, lentils, etc. contain Vitamin B6, for example; liver, eggs, fish, lamb and beef contain Vitamin B12; pumpkin seeds, nuts, legumes, ginger and oats contain Zinc; sweet potato, winter squash, broccoli, leafy greens, whole grains, nuts and legumes contain Magnesium; broccoli, leafy greens, winter squash, seaweed, nettles and nuts contain calcium; beans, rice germ, liver and asparagus contain folic acid; liver, egg yolk, butter/ghee, cod liver oil, dairy fat contain Vitamin A and D; sweet potato, winter squash, broccoli and leafy greens contain Vitamin C; fish/cod liver oil, beef and lamb, egg yolk, butter/ghee, flax seeds, hemp seeds, walnuts, algae-based DHA contain Omega 3, an essential fatty acid that is crucial in nutrition; and blackstrap molasses, liver, pumpkin seeds and duck eggs contain iron.

Matthews also offered alternative ways of cooking to enhance the diet. “Cook and puree vegetables and then add them to other foods,” she suggested. Also, “juicing” is very popular among children who enjoy smoothies or resist certain textures, etc. Matthews added, foods that are rich in probiotics (dietary supplements that contain potentially beneficial bacteria or yeast) and fermented foods (which entail preparing food in such a way that its micro-organisms or enzymes alter the properties of the food) are quite useful in inhibiting specific bacteria that may be the culprit in diarrhea, for example, and other digestive issues, as well as helping to assist in the breakdown of sugars, lactose and oxalates, protecting against environmental toxins and helping to support the immune system overall.

Regarding any change in diet, Matthews stated, “Start where you can, removing and adding food over time.” She added, “Parents can make a difference.”

In her lecture entitled, “Biomedical Interventions From A to Zinc” Dr. Nancy O’Hara also offered ways to enhance a seemingly dilapidated system that so many children with autism appear to own. Like Matthews, O’Hara suggested the removal of any negative food influences, as well as attempting specific diets. O’Hara presented several case studies in which the individuals profiled experienced symptoms ranging from behavioral challenges to diarrhea to thrush or cradle cap. All individuals were treated with various approaches ranging from natural remedies – probiotics and herbal remedies, such as garlic and oregano oil, for example - to drug therapy – antibiotics, etc. O’Hara’s approach did seem to involve more conventional drug therapy than natural treatments, which, in some cases may create other symptoms or challenges in the body … something to consider when evaluating treatment options.

According to many of the speakers present at the conference, many individuals with autism lack the ability to efficiently detoxify harmful environmental toxins, a challenge that if left untreated may not only exacerbate symptoms of autism but may also lead to other serious challenges or health conditions.

According to Dr. Dan Rossignol, as harmful toxins such as mercury from the environment enter or “invade” a body, they may cause extremely detrimental effects, especially if an individual is genetically susceptible to the invasion. In his lecture entitled, “Impaired Detoxification in Autism and Individualized Treatment Strategies,” Rossignol explored the possible genetic vulnerability of children with autism to environmental toxins, as well as the means to assist the child’s body in detoxifying itself from these toxins, which he said could be the culprit in many symptoms of autism including thyroid dysfunction, mitochondrial dysfunction, oxidative stress, inflammation, as well as an increase of glutamate and/or an anti-GABA effect (glutamate and GABA are neurotransmitters in the brain).

According to Rossignol, boys may possess a greater genetic susceptibility to toxic metals than girls because they have lower glutathione levels, higher oxidative stress, a higher retention rate of metals due to an inability to excrete them more readily, and because they lack estrogen (which acts as an antioxidant) and have testosterone instead, which increases metal toxicity.

Rossignol suggested that a child’s exposure to metals may begin as early as when he is in his mother’s womb, for example, if she was given a Rhogam shot with thimeresol, consumed much seafood, had mercury-containing cavity fillings or amalgams (which, can be safely replaced even years later with less harmful fillings), or was exposed through her occupation, etc.

Rossignol noted the ongoing controversial issues of vaccines and how the frequent administration of the vaccines may contribute to autism not just because of the mercury or thimeresol in some of them but because of the other ingredients in vaccines, as well … lead, arsenic, formaldehyde, for example. Citing several studies, Rossignol stated that more and more, children in the United States are being born with “unsafe blood levels” and that while the manufacturers of vaccines would have the general public believe that the low levels of mercury in the vaccines were/are safe, “there is no level of exposure that is convincingly harmless - especially to the developing fetus.”

Getting rid of toxins, said Rossignol, takes work to say the least, especially because the focus needs to be not only on the inside of the child’s body (what he has been previously exposed to) but also what he continues to be exposed to in his (un)natural environment – and while mercury is surely a damaging force, Rossignol stated that it is not the only toxin to be concerned about.

Among several precautions to avoid toxicity, Rossignol suggested eating organic food (which are free of pesticides), avoiding seafood and foods containing phenols and avoiding excitotoxins, which react with brain receptors and may lead to the destruction of brain cells. Excitotoxins are often hidden but quite prevalent in many foods. They may be disguised in ingredients such as natural flavoring, spices, etc. Glutamate is a common excitotoxin; Monosodium glutamate (MSG) is the sodium salt within it.

Unfortunately, the world as we know it is growing more toxic as time goes on and the list of harmful substances within the environment may seem overwhelming. Rossignol suggested other means of prevention that include: avoiding plastics (especially microwaved ones!), aluminum cookware, pesticides, and fluoride in toothpaste (fluoride is a chemical linked to many serious health conditions including cancer, Alzheimer’s, osteoporosis, musculoskeletal and nervous disorders).

In addition, Rossignol recommended that a child’s body may also be strengthened, especially before he begins a chelation regime such as DMSA, DMPS or (CaNa2) EDTA, if he takes various supplements, pays attention to his diet, and is treated with probiotics, digestive enzymes and/or glutathione.

In her lecture entitled “Autism Research in Arkansas: On-going Clinical Trials and the Arkansas Autism Alliance,” Dr. Jill James evaluated the efficacy of methylB12 and folinic acid treatment on glutathione redox status and core behaviors in autism.

Folinic acid is one active form in a group of vitamins known as folates. In contrast to folic acid, a synthetic form of folate, folinic acid is one of the forms of folate found naturally in foods. In the body, folinic acid may be converted into any of the other active forms of folate. This bioactive form of folic acid is one of the supplements used to promote higher levels of glutathione in autistic children.

James presented results from a three month open trial of methylcobalamin and folinic acid in autistic children. While the treatment did not significantly improve levels of methionine, SAM or SAM/SAH, it did significantly improve cysteine, glutathione, and GSH/GSSG. In addition, those who were treated were reported to have improved results in their behavior, which included communication, daily living, socialization and motor skills.

Also present at the DAN! conference was local DAN! practioner, Dr. Sidney Baker. In his lecture entitled “Autism: The Most Serious Expression of The Oceanic Disease,” Baker suggested that autism is not so much unlike many other conditions experienced by individuals. Rather, “It is one manifestation of chronic illness in a culture-wide epidemic of problems with detoxification, oxidative stress, and inflammation expressed as various diseases.” Baker stated that having this knowledge at hand may help doctors and caregivers of those with autism treat the symptoms of autism similar to how they would symptoms of other chronic illnesses – cancer, heart disease, dementias, autoimmune disorders, for example.

Baker presented a case study of a group of 28 heart patients, who all were given a rather dismal prognosis. Having nothing more to lose, the patients underwent treatment that involved a drastic change in their diet. And lo and behold, revealed Baker, “They all survived for years after.”

Baker presented a graphic model of autism of which many of us are all too familiar with: the words “communication, socialization and behavior,” surrounding the word “autism,” which suggests that autism is caused by a deficiency in these areas. Baker presented an alternative model: “GSH” centered among “detoxification, oxidative stress and inflammation.” He suggested that poor nutrition, environmental pollution and other ecologic stressors have increased the incidence of many a chronic disease, especially autism, and that treating these demons and the underlying symptoms of autism that they created may very well heal the autistic child from the inside out.

Baker also announced the availability of a wonderful new resource called Medigenesis, a website that enables users to anonymously enter their child’s symptoms and gather interventions for those symptoms through a comprehensive database. The site also features an online library and access to discussion groups and general information.

According to Baker, it is not just the science and the knowledge of the human body that must develop and change: people need to change; their beliefs need to change; the system needs to change – especially when addressing autism. Still, Baker acknowledged the challenge within “our culture” to create change and be changed. He said, “Most people would rather die than change.”

But what if simply changing the way we perceive disorders such as autism, could drastically change for the better, the way autistic children were treated biomedically and in every other way for that matter. What if we searched deep inside to the root of the true causes of autism and discovered not only the means to defy the symptoms of the disorder but to prevent it altogether?

In his lecture, “Prevent Harm Now: How to Carry, Birth, and Raise a Healthy Child in a Toxic World,” Dr. David Berger discussed how the combination of genetics and the environment may lead to chronic disease and/or autism and offered suggestions on what families could do to decrease their chances of their child developing such complications.

Before a woman is pregnant, Berger suggests several precautionary measures that include having amalgram fillings removed six months prior to conception and possibly getting chelated after the removal. He also recommended specific testing that the mother could take to evaluate her health.

Good pre-pregnancy and pregnancy nutrition are crucial for a developing fetus, stated Berger. He suggested eating as much organic food as possible and avoiding processed foods; increasing protein intake; taking a quality multivitamin in addition to fish oil; and 1000 to 1200 mg of calcium daily. Berger also suggested that a mother consider taking MB-12 with folinic acid and glutathione.

Upon birth, Berger stressed the significance of breastfeeding as the healthiest alternative to infant nutrition; however, if breastfeeding is not an option, he suggested using hypoallergenic predigested formulas instead of the standard cow milk or soy formula. When the baby is ready for solid foods, said Berger (usually around one year of age), vegetables versus fruits should be offered more weight in their nutrition and of course, he recommended avoiding all processed foods, etc.

While Berger did not take a definitive stand on the administration of vaccines, he did suggest that they be offered with caution – that they be delayed, separated or avoided altogether, especially when a child is sick. Berger proposed that our society – our children - have become overburdened with the simultaneous increase in vaccines administered along with the growing cases of autism, developmental disorders, autoimmune disorders, chronic illnesses, etc.

The 2008 Defeat Autism Now! Conference: A Parent’s Perspective

As a mother of a wonderful five-year-old boy with autism, I was inspired by this year’s DAN! conference. The amount of research that is being done – although notable there will never be enough until a cure or solid means of prevention is discovered – and the amount of treatment that is available, while sometimes overwhelming, is nothing short of amazing. While the incidence of autism cases has increased tremendously, so has the response to the disorder. Still, we certainly have a way to go, as no one should be satisfied until families no longer suffer from the effects of autism.

At the first conference my husband and I went to in 2004, the audience was asked a simple question by a speaker: “How many of you participate in biomedical treatments in addition to conventional therapy?” Having leaped at some of these treatments upon discovery, which happened to be within weeks of my son’s diagnosis, my husband and I were astonished to see that not many in the audience were treating their child biomedically. We asked many of them, “Why?” Their response was also astonishing:
“What are biomedical treatments?”
“Oh, the gluten/casein-free diet … we tried it for a week and it didn’t work.”
“Biomedical? Sounds like too much work.”

Having seen such miraculous results within our own child at the start of a gluten/casein/soy/corn-free diet, my husband and I then realized that autism presented many more challenges than the symptoms present in the child with the disorder.

Having a child with autism forced my husband and I to realize that not only did we have to change the behavior of our child but we also had to change the behavior and philosophy of our entire family – if at least our immediate circle – in order to create a better quality of life for all of us. That being said, attending the 2008 DAN! conference had certainly left us with more hope not only for our own family but for others, as well.

At this year’s DAN! conference, the audience was asked the same question: “How many of you participate in biomedical treatments in addition to conventional therapy?” Only a small percentage of them kept their hands down, meaning that they had not attempted such treatment – as of yet. This time, when I asked some of them “Why?” their responses seemed much more logical and many of them said: “My child was just diagnosed. I came here to learn my options for treatment.” Still, while the numbers seemed much fewer than in the past, there were others who were reluctant to attempt biomedical treatments due to a “fear” of too much work, a lack of success or progress, and a sheer disbelief in the efficacy of biomedical treatments.

My grandfather always said, “You can lead a horse to water but you can’t make him drink it.” He was right. But as parents, caregivers and practitioners, we must not give up in the fight against autism for ourselves and for others. It is understood that biomedical treatments may not work or work as well for some as it does for others, but we can’t let fear or ignorance get in the way of trying.

On a final note, I would like to mention a wonderful young woman I met at the conference. She is 31 and was only diagnosed with asperger’s upon her college career. In grade school, as well as high school, she said, “I did not have one friend.” Her grades were high but her social skills and her self-esteem were low. Still, having been diagnosed and then treated mostly with nutritional therapy – even in her later years – she continues to improve. And that is nothing short of amazing.

While this young woman is certainly challenged by asperger’s, she said she is determined to help herself and others defeat it. And that is what DAN! is all about – creating change in spite of the overwhelming obstacles not only autism but society - which may include our own family and friends - present. We can’t go back in time, as I’m sure this woman in particular wishes she could, as many parents myself included have also wished for – but we can move forward both individually and collectively in a positive and educated way to heal the children and families who live with autism each and every day of their lives and protect those who don’t.