Chapter from the book
Recovering Autistic Children
Edited Stephen M. Edelson, Ph.D. and Bernard Rimland, Ph.D.

Joining Hands to Overcome Autism

By John Green, M.D.

The EverGreen Center, Oregon City, Oregon

Dr. Green, a specialist in clinical ecology and nutritional medicine and a Defeat Autism Now! practitioner, works in Oregon City, Oregon. You'll notice that his name appears in several of the other stories in this book.

I have been practicing medicine for 27 years. My first five years in practice were spent discovering that much of what I was taught in medical school proved ineffective at resolving chronic health problems. Subsequently, over the past 22 years, my focus has been on learning how to treat patients with chronic “mystery” illnesses, which are generally poorly responsive to conventional therapies.

The first teachers in this new medicine I have been learning were patients. They asked penetrating questions; they tried new interventions—diets, vitamins, herbs, detoxification, colonics, breathing exercises, visualizations, energetic therapies, etc.; and they brought me books, tapes, and phone numbers of healers who had helped them. In some cases my skepticism was too strong, but in many cases the changes I saw in my patients helped me to listen and learn from their experiences. This helped me find other doctors with minds and hearts open to learning and teaching better ways to care for our patients. The most important groups of like-minded physicians in my “upbringing”ť in medicine are the American Holistic Medical Association, the American Academy of Environmental Medicine, the American Enzyme Potentiated Desensitization (EPD) Society, and the Defeat Autism Now! group.

Over the years I have encountered four main challenges in this work. The first arises from medical training, which teaches us to group patients by diseases, in order to study the disease, and treat the disease rather than the patient. This stereotypic process fails to adequately address such important variables as biochemical individuality, belief systems, individual susceptibility and vitality. Also, by reducing patient problems to specialty areas, such as gastroenterology, neurology, psychiatry, and immunology, we in effect separate our patients into parts. Who is to reconnect the whole and unify the patient? Autism, as discussed below, is a multifactorial illness, with tissue injury occurring through a variety of self-reinforcing mechanisms. Autistic patients require an integrative approach to treatment, rather than a reductionistic approach. So M.D.-type doctors need to learn to think holistically in order to best help autism spectrum disorder (ASD) kids.

The second challenge relates to time and money. There is so much to explore related to a person's illness—the patient's story, the family dynamic, laboratory tests, response to past treatments, which treatments are appropriate, priority and sequencing for specific interventions, and evaluation of response to treatment. With every patient, a doctor faces constraints on time and money, which influence the therapeutic milieu. In each case it is necessary to develop a way of working within these constraints in order to optimize the resources of the patient and the family. In some cases this requires approaching treatment in an empirical and often intuitive fashion. In other cases where resources are relatively unrestricted, there is an opportunity to do more testing and develop treatments based on the results. These patients who receive more in-depth investigation have provided help in understanding how to treat some of the aspects of autism in other children.

In working with ASD patients from all walks of life, it has proven extremely helpful to use phone, fax, and both types of mail. I encourage families to report in monthly with progress updates and any questions, and this helps us to reduce office visits to about half the frequency we would otherwise need. This decreases demands on the family in many ways, including missed work time and school or therapy time. Many families have learned to be very succinct about encapsulating for me a summary of the past month, including response to interventions, assessment of current status (I use a symptom checklist and score sheet to help with this), and update on diet and exactly which supplements and medications are being given (including dosage). Some parents even send videos of their children to vividly show how they're doing.

The third challenge relates to risk and uncertainty. If we choose to provide no medical treatment to an autistic child, we risk losing the opportunity of bringing about major change in the “golden” first five years, and this is one of the saddest losses. If we choose, as have the Defeat Autism Now! doctors, to offer the treatments that have been shown to be effective in many children, even if lacking the endorsement of the medical establishment, we face other risks:

One risk is lack of insurance coverage, which is common and desperately needs to be changed.
Another risk is adverse action by authorities, including regulatory institutions. In extreme cases, child abuse allegations have been made against parents by child protective services because children were receiving treatments not approved by the medical establishment. Innovation is risky. There is the risk of uncertain outcome with new therapies, and the sometimes greater risk of ostracism or attack by defenders of the status quo. Several Defeat Autism Now! doctors, including myself, have been subjected to investigation by the state medical licensing board related to treatments that have helped many autistic children. The experience of undergoing investigation by an intrinsically antagonistic medical board is harrowing, expensive, and degrading, even when the doctor is cleared of any “wrongdoing.” I personally know several doctors who have lost their licenses for stepping out of the box in order to offer innovative and effective treatments. Dr. Andy Wakefield's experience as a whistleblower epitomizes the injustice inherent in a medical system that can be so self-serving as to shoot the messenger.
An additional risk is that a child might be harmed by a treatment. In fact, to date the therapies derived from the Defeat Autism Now! Protocol are remarkably safe, with no reports of serious injury or irreversible harm to my knowledge—the one exception being a case stemming from a drug error caused by two similar-sounding medications. Nevertheless, prudence is essential; and we continue to investigate gentler, less expensive, and easier ways of treating such problems as toxic metals, yeast and bacterial overgrowth, allergies and autoimmunity, inflamed bowels, and circulatory and metabolic problems.
Still another risk for professionals is psychological. Autism is a very complex disease, and committing to treat affected children calls upon all of our emotional resources. Children are unpredictable in their responses to interventions as simple as eliminating one food from their diet, or giving a probiotic or a B vitamin. It is both inspiring and humbling to travel along with families in their journey through autism and its vagaries. It is common to find that children who have similar lab findings and symptom profiles may respond quite differently to the same treatment. This requires the doctor to work hard at dropping personal demands that we must get it right the first time. It may be as valuable to learn what does not help a child as what does help, if we can stay tuned in and use this information to better shape our approach to treatment. But if the doctor is heavily invested in a particular treatment that has failed, the disappointment or frustration may occlude the doctor's view of what comes next. So we doctors and parents need to be almost as resilient as the children.

The fourth of the challenges I have encountered derives from our Western materialistic (Newtonian) view of reality and illness. Whereas an illness is actually an expression of a body that is out of balance struggling to restore balance, we tend to think of illnesses as “entities,” ascribing to them an almost physical existence. We doctors also seek to objectify and quantify people's experience of illness, i.e., “Rate your pain on a 10-point scale,” “How many stools per day?” “Her mercury level is only 4 ppm.” We do need data to assess and prioritize approaches to treatment. But we can be led astray by invalid data. For example, one autistic child I am treating has had three IQ tests over three years. The first time, at age four, she scored 68, or significantly retarded. The second time, at age 5 1/2, she scored 89, or mildly subnormal. The third time, at age seven, she scored 100 or “average.” Is her intelligence increasing with treatment, or are the numbers invalid, changing because of her improving ability to relate to the testing process? In her case, the latter seems to be true. But if her parents had accepted the first test score, expectations for this child would have been very low, focusing mainly on training her to get along in life. Now expectations focus on educating her to help her thrive and contribute in life.

In many cases, the parent knows best. This was illustrated by one secretin study in which psychologists evaluating ASD kids treated with either placebo or active secretin were unable to distinguish treatment with placebo from treatment with active hormone. Parents, on the other hand, were able to identify the active therapy with a high degree of confidence.

We must strike a balance between knowing the data about the illness and knowing the patient's experience. Quantifying symptoms and measuring lab results can help us to better monitor progress and change therapy, but if we rely too heavily on data, our work can become sterile and devoid of love. Autistic children are confronted with pain, frustration, fear, and confusion in their lives. These are issues each of us must face at times in our own lives. Children are wonderful models and teachers for us if we can share our humanness with them and allow our own deeper issues to be touched by their suffering and their buoyancy. My office walls are papered with delightful drawings produced by artistic autistic children who convey their love, their hope, or simply an overflowing of their perceptions to be shared with anyone.

Eight years ago a mom brought her four-year-old autistic son, Jordan, to me for evaluation. He was only the third autistic person I had treated, and at that time mom knew more about the disease and its treatment than I did. We approached his treatment together, with mom helping me to let go of stereotypes I had acquired about autism as an untreatable illness. She also gently helped me to access tools that I'd used in investigating many other types of chronic illness, i.e., looking at his biochemistry, allergies, gut flora, toxins, and general nutritional adequacy, and supporting the strengths of the family. Jordan has made great progress over these years, doing well academically, becoming involved in religious training, and demonstrating real talent as a musical performer. His main residual difficulties are a mild speech impediment, mild respiratory allergies, somewhat concrete thinking, and a tendency to obsess about certain subjects. Last week we had a detailed conversation about what it means to be autistic and what it is to obsess. He described being autistic as a different way of thinking. He said he knows he is obsessing when mom says, “Couldn't we talk about something else now?” Jordan has a delightful sense of humor, a very affectionate nature, and a striking concern about justice. Jordan and his mother really opened for me the world of treating autistic children.

I began to see a few other affected kids, and then in l999 another mom brought a deluge of ASD kids after I began treating her daughter. She had been to a meeting I was attending in another state on autism treatments. When I introduced myself and my practice location in a question-and-answer period, she searched me out after returning home. After her daughter began to improve under my care, she referred others in her network to me. I became acquainted with more parents of ASD children and was amazed at the devotion, intelligence, and commitment that are common to these people. The severity of the autism epidemic became palpable to me, and a growing sense of urgency developed. I learned more about caring for the affected children, and felt a growing need to commit my practice to these children and their families. So, for the past 2 1/2 years, I've been saying goodbye to my faithful adult patients and accepting only affected children into the practice.

My evaluations of more than 300 ASD children have demonstrated clearly that these children are physically ill, afflicted with significant problems in many organ systems. The work of treating them amounts to two basic processes, both aiming to restore balance and vigor and proper communications extending from the cellular level to the interpersonal.

The first basic process is the identification and treatment or removal of obstacles to healthy organ activity. There are many such obstacles in the worlds of ASD kids, some obvious and some subtle. Commonly encountered obstacles include allergies and food intolerances, metal and chemical toxicities, infections (fungal, viral, bacterial, parasitic, and mycoplasmal), oxidative stress (problems with electrons moving around in the body out of control), acidosis (too much acid being produced in the system, though usually not in the stomach, where it is needed), and psychosocial stress (sensory issues, confusion and frustration, difficulty recognizing and receiving love, etc.). A child may show major improvement simply by clearing an obstacle which is really troubling him, such as a food intolerance, yeast infection, or metal poisoning.

The second basic process is identifying what is weak, disrupted, or deficient in a child and working to overcome or compensate for the impairment. ASD children often have impairments or deficiencies in immune defenses (especially in cellular immunity and in the proper regulation of the immune response). They are commonly deficient in many essential nutrients due to self-restricted diets, poor digestion and absorption, nutrient wasting through cellular energy disruption, our nutrient-depleted food supply, etc. Their tissue oxygenation may be disrupted by stiff red blood cells, abnormal clotting tendencies, and acidosis. Excess acid in the system results in hyperventilation (over-breathing), which decreases brain blood flow. Deficiencies in digestive factors are extremely common, including essential enzymes (dipeptidyl peptidase IV [DPP-IV] and others), stomach acid, intestinal hormones (secretin, cholecystokinin [CCK]), bicarbonate (acid neutralizer), secretory IgA (antibody lining and protecting the mucous membranes), and beneficial flora (friendly germs). Neurotransmitter levels and activities are often weak in ASD, related to a number of factors, including disruption of vitamin B6-dependent enzymes (which are extensively involved in neurotransmitter synthesis; impairment of these enzymes may raise body requirements for B6 several hundred-fold). Weakness in detoxification functions is common in ASD. There are many aspects to this problem, salient factors being impaired synthesis of glutathione (a personal cellular “bodyguard”), disrupted activity of metallothionein (a super-potent metal chelator made in the body) activity, and depleted sulfation (a good form of sulfur) pathways. ASD children often have injuries or imbalances in thyroid and adrenal glands that need attention. Finally, these children often have obsessive tendencies and almost addictive behaviors that lead to restrictions of input in many critical areas, including balanced diet, effective play, social learning, problem solving, physical activity, language, and positive emotional feedback.

Healing happens through removing obstacles and strengthening weak systems by supplementing for physiologic deficiencies and providing corrective therapies. As Sid Baker, M.D., has said, “We seek to find out what the child needs to eliminate, and what they need to get more of—we're specialists in ’more or less' medicine. In doing so, we allow the body to return to a state of balance, restoring its incredibly intricate communication systems and repairing injured organs to the extent that is possible.”

I often reflect on the fact that chronic illness is chronic because of self-perpetuating cycles of injury that the body cannot break without help. There are many such cycles in autism. For example, many autistic children exhibit elevated mercury levels. Mercury poisoning disrupts digestion, so that nutrient depletion and food sensitivities (including sensitivity to gluten and casein) develop. Opportunistic infections arise, and antibiotics further weaken the system, upsetting intestinal flora, and increasing the toxicity of mercury that is already in the system. Nutrient depletion impairs the detoxification pathways, and other toxic substances in the environment cause further injury. Toxic materials, yeasts, and other microbes injure the immune system, and autoimmunity and unregulated inflammation result. Inflammation activates clotting systems and results in reduced tissue oxygenation. The result of all these processes is tissue injury in many organ systems, and the cycles continue. Our work is to break these cycles wherever possible; and as this is accomplished, the body will regain homeostasis and self-regulation, and move toward healing. This work is often a struggle, requiring “tough love” and a clear sense of priorities.

The following are extracts of conversations I have had with moms or dads that illustrate some of the struggles we face in treating these children. “Change his diet.” “He won't eat anything but gluten, casein, and carbs.” “Give her 1/2 teaspoon of cod liver oil each day.” “She vomits when I give it to her.” “Rub the glutathione into her back each night.” “She gets hives when I put it on her skin.” “Let's treat his intestinal worms.” “We'll have to treat the cat, too, as he's been eating the cat poop.” “You need a break, why don't you have an overnight with your husband?” “My son's bitten the last three babysitters we tried.” “Make sure not to give her any more antibiotics, unless they're for a life-threatening illness.” “She had pneumonia three times last winter, is that life-threatening?” “Hide the Nu-Thera in his juice.” “He won't drink anything but water.” “Let's turn off the television and computer.” “He tantrums and beats his head on the floor if I don't keep his video running over and over, just showing the credits.” “Please get a urine sample after the DMPS shot.” “She's pulled off the bag every time I try to do a urine collection.” “We'll sedate him for the blood draw.” “The dentist tried that; it only made him hyper and drunk.” “We have to avoid dehydration in order to succeed with EPD.” “She's refused all liquids the past 24 hours since we took away her pear juice.” “How's the GFCF diet going?” “Fine, except when she sees grandma, who sneaks her cookies.” “We have to get all sources of aluminum out of her life.” “I've gotten rid of all the sources I can control, but she is always chewing on metal objects.” (When in my office, this child, who has severely elevated aluminum levels, chews on the metal handle of the reflex hammer and the metal knob of the blood pressure cuff, rather than the soft rubber ends of these.) “How's he responding to chelation?” “It was going great until we added ALA, when his stimming increased and he stopped sleeping through the night.” “We need to get that amalgam filling removed.” “Her dentist refuses, and the two mercury-free dentists you recommended won't treat uncooperative children.” “I see you haven't done the organic acid urine test.” “My insurance paid for the whole workup at the University—MRI, EEG, chromosome studies, an organic acid test, and amino acid test; they were all normal. But since we've started to make progress with your treatment, they're not even paying for office visits. They say it's experimental and unproven.” “How did the colonoscopy turn out?” “The gastroenterologist changed his mind when he saw my boy. He said it's normal for autistic children to be constipated, and wasn't concerned about the rectal bleeding or the vomiting.” “The pediatrician said to immunize my younger typical son or find a different doctor.”

Following are extracts of conversations that convey some of the reasons why I continue to look forward to each day in the office. “Since his first dose of DMPS he's potty trained.” “Her teacher called me to ask what I'd done; he's a different child since the secretin shot.” “We took corn out of her diet, and now she sleeps through the night.” “He said a three-word sentence an hour after the Epsom salts bath, and the language keeps coming. How many times a day can he have a bath?” “The constipation has cleared up since that course of Flagyl last month.” “Every time I give a B12 shot, she has two great days of better focus, mood, and energy. Can I give it twice a week?” “The tantrums stopped after three days on Super Nu-Thera, and now I can take him shopping with me.” “When he's on DMSA, the hyperactivity is gone! It has more impact than Ritalin.” “My child is not autistic when he's on Nizoral. He's still a lot better; but a week after stopping it, he started to disconnect and do some of his quirky things again.” “I got my child back when I raised the cod liver oil to one tablespoon a day; is it OK that I did that?” “The diarrhea stopped within a week on the specific carbohydrate diet, and she's starting to eat lots of new foods now.” “My daughter's doctor was really impressed by her improvement. He warned me to stay away from those doctors who are doing chelation treatment, and said to keep up what I've been doing to help her.” “After one dose of cod liver oil, she stopped looking at everything sidewise.” “This diet is hard, but so worth it: after a month she's calmer, her language is clearer and more complex, and she's begun to play appropriately with her brother.” “He stopped talking about cutting people up with chain saws after about a week on Yeast Control.” “Since I started giving lemon juice with each meal the bloating and regurgitation have dropped off dramatically.” “Melatonin is wonderful; it had been more than a year since she slept through the night, and she went right to sleep the first night. It's kept working all month, can we continue to use it every night?” “The zinc sulfate cream really helps reduce his stimming.” “The developmental pediatrician who diagnosed him, and said that nothing can be done, told me that you're a quack. I went home and made an appointment to see you, and everybody's noticing improvement after just three months.” “Thyroid has made such a difference—no more constipation, and he's so much more alert and with it.” “At last I've found someone who believes me. Thank you for listening.” “We've seen lots of improvements since starting NAET—best is the disappearance of aggressive behavior.” “She produced a whole stream of new language on the way home from the first craniosacral treatment.” “The regurgitation episodes have gone down from dozens per hour to just a few per day since we treated the yeast.”

I have presented a lengthy (though not comprehensive) set of considerations to be addressed in undertaking to treat your autistic child. It can be (and often is) overwhelming to attempt to do everything possible. The important thing is to decide what to do next, and then do it properly. My perspective is that it is necessary to establish a strong collaborative relationship with your doctor and others who work with your child. For this to succeed, parents need to be willing to “step up to the plate” and shed the old view that one must simply obey the doctor. You are creating a team to treat your child, and you are in charge of the team. You hire doctors and therapists to help you understand how to better take care of your child, and also to provide treatments that you cannot do on your own.

In order to form an effective collaborative team, it is helpful to look beyond the medical perspective on illness, and instead view your child's illness from a more holistic perspective. I have included a table that compares some of the philosophical differences between holism and conventional medical thinking. If you seek to understand your child's autism from a holistic perspective, it will help everyone involved in his or her treatment to “come aboard” with you.

You may find a holistic approach in unexpected areas. Some naturopathic physicians (who are all trained to think holistically) have nevertheless adopted a model of treatment that is very “allopathic” (traditional and disease-oriented) rather than holistic. And many practicing physicians who care about their patients will be able to partner with you and adopt a more holistic perspective when evaluating and treating your child.

In some conditions, such as cancer and heart disease, establishing a diagnosis is critical to effective treatment. In the case of autism, it is useful to make a diagnosis in order to become eligible for services, to have an address to go to on the Internet for researching your child's problems, and to explain your child's difficult behavior in public. But this diagnosis tends to close the door on medical treatments unless you are able to locate a physician who is willing to listen to you and move beyond the stereotype of autism as a developmental illness that has no medical treatment. If you are thinking functionally and holistically about the manifestations of your child's illness, it will help if your child's doctor joins you in learning to effectively dialogue and decipher the language of your child's illness.

Your insurance company will balk at reimbursing for any medical care if the diagnosis of autism is used (i.e., ICD-9:299). For insurance purposes, it is best to focus on the specific symptoms your child is experiencing and bill for diagnostic and therapeutic services based on those problems. For example, if your child bangs his head, it is not because he is autistic, but because his head is bothering him. If she won't eat properly, it is probably because she has digestive upset. If he eats dirt, it is likely that his minerals are out of balance. If he goes bananas after eating bananas, he is probably sensitive to phenolics and not just “autistic quirky.” In each of these instances, it is appropriate to look deeper into the particular symptom, recognizing that it is meaningful and relevant to the body wisdom of your child.

In a greater sense, our society is finally beginning to look deeper into this epidemic of autism. But it is just beginning to do so, as more professionals and influential people see their own children impacted. This disorder is threatening to fiscally incapacitate our educational system and will place inconceivable burdens on the next generation if not solved. Even if the rate of increase of autism is halted now, the costs of caring for affected children growing into adulthood will be more than we can bear. It is you parents, hundreds of thousands of you in the U.S. alone, who will determine the fate of our children and, ultimately, of our society. Children need to have full access to all of the currently useful treatments. No longer can we tolerate the “head in the sand” approach of regulatory agencies to vaccines, heavy metals, environmental toxins, overuse of antibiotics, and nutrient depletion of our soils and foods, all of which are contributing to this disease. We need to demand and receive vigorous funding from the government for relevant and unbiased research into the remaining unanswered questions about causation, prevention, and treatment.

If we unite in purpose and make our voices heard, the undue burdens on our children that are causing this epidemic can be targeted and removed.

Update for Second Edition:

There is increasingly strong evidence that the autism epidemic, along with increases in many other childhood diseases, is related to environmental toxins (in addition to mercury). These toxins are persistent, bioaccumulative agents, which are found in food, water, and air. Some of these harmful agents include PCBs, flame retardants, plastic derivatives, pesticides and herbicides, fluorinated hydrocarbons found in Teflon, and a long list of toxic waste products that are added to fertilizer as a means of disposal. These types of chemicals produce oxidative stress (inability to protect the brain and other sensitive tissues from our own metabolic byproducts), hormone disruption (especially thyroid and sex hormones), obesity and insulin disturbances (arsenic and MSG), and impairments in neurotransmitters and cell signaling systems (pesticides, plastic derivatives, heavy metals, PCBs). The developing nervous system is particularly susceptible to disruption by toxins, and such disruptions may result in many of the symptoms of autism.

It is becoming apparent that through epigenetic mechanisms (such as the switching on or off of critical genes through effects of certain chemicals), parents may transmit to their children damage to genes acquired through environmental exposures. This may result in a syndrome that looks like a classical mutation, in that several children in a family may be affected. The critical difference is that these disturbed genes might be restored to appropriate functioning by vigorous detoxification and nutritional support of the parents before they conceive another child, thereby reducing the risk of having a subsequent special-needs child. From many perspectives, it makes very good sense to do all we can to minimize exposure of ourselves and our children to man-made chemicals. Implement the precautionary principle with regard to these substances: Assume it is unsafe until proven safe. Extending the extraordinary care you have provided for your children to yourselves and your environment will help ensure a world in which our grandchildren will have a chance to live and thrive without the specter of autism.