Autism is treatable: hope that is real, treatments that heal. Townsend Letter for Doctors and Patients; 10/1/2004; Reagan, Lisa
"My name is Michael Augerson. I'm autistic. Basically when you're autistic, you feel urges to do things that you really need to do. You can't stop yourself. Like you have taken a drug. You have no idea what others are talking about, because it doesn't make any sense to you. Others think of you as a freak, loon, or a retard.
"I was able to find a way to change. Some doctors have been able to find the problems and correct them. I have a special diet, take a lot of vitamins, stay away from chemicals and take medicine for my colon and an antifungal. For me, it's like I've become a new man (or should I say teen). I now have an ability to control myself. I can understand the plot of a book and movie. I can have friends without them teasing me. I've also changed physically. A year ago, I was shorter than my brother who is three years younger. Now I'm as tall as my mother. I feel as if I've been reborn. For the first time in 14 years, I feel normal. Other people don't see me as normal yet. I would like if they would treat me as an equal.
"I still have some problems and am willing to go through tests to find the answers. I think one day I might be able to succeed in not being autistic. It would be a dream come true for me and my family." (Written by Michael, 14, in June 2004. Michael, whose parents were told he would be institutionalized, has healed through biomedical treatments and has been mainstreamed into a public school and is an honor roll student.) When Michael was diagnosed by a neurologist with severe autism at age three, he did not recognize his mother, was highly aggressive, self-abusive and rarely slept. "Back then, in 1989, no one knew what autism was, much less how to treat it," explains Michael's mother Sara. Back then, Sara was also told that her cravings for two to three cans of tuna fish a day were healthy for her pregnancy. These days, thousands of families are discovering successful biomedical treatments for autism and cans of tuna carry warning labels to pregnant mothers about possible mercury contamination. The Augersons are one of thousands of families who have discovered successful treatments through their own pioneering efforts and through the Defeat Autism Now! (DAN!) protocol established by The Autism Research Institute, a San Diego-based nonprofit and world center for research and information that has tracked promising treatments for autism since 1967. ARI's database is the world's largest with more than 37,000 detailed case histories of autistic children from over 60 countries. In 1964, when ARI's founder, Bernard Rimland, PhD, released his groundbreaking book Infantile Autism: The Syndrome and its Implications for a Neural Theory of Behavior, the current medical belief was that autism was caused by an unloving "refrigerator" mother and the appropriate medical treatment for autism was "for the mother to acknowledge her guilt, and disclose why she hated the child and wished it had never been born."
"The child, in so-called 'play therapy' was provided with a paper or clay image of a woman (his mother) and was encouraged to tear it to bits, thus expressing his hostility toward his mother, whom the psychotherapists were positive has caused his autism. There were also a few drugs that were also used with autistic children, but then, as now, the idea was not to treat the autism but to slow the children down enough to make life tolerable for those who must deal with them." (1) Rimland's groundbreaking book on autism, inspired by the birth of his own autistic son Mark in 1956, exposed the lack of scientific evidence to support the "bad mother" cause of autism, won the 1964 Century Award, and attracted the attention of parents worldwide who contacted Rimland and shared with him their personal treatment successes with their own autistic children.
Blamed and shamed into accepting responsibility for their children's suffering by the medical model and its physician supporters in the 50's and 60's, mothers of autistic children were left with no guides outside of their own experience and intuition for discovering "treatments." And they were successful.
"Mothers of autistic children were extremely effective at identifying treatments that were helpful to their children. They were also very observant in detecting factors that caused their children to become worse. It was very evident that there were a number of treatments, largely discovered by the parents of autistic children, that were much more effective than the drugs being used by the psychiatric establishment, and certainly much safer," (2) Rimland writes. Rimland went on to found the Autism Society of America in 1965 and was an early advocate of behavioral intervention known as ABA. From the 60's to today, the rate of autism has exploded from 1 in 10,000 to 1 in 166, and a further 1 in 6 children is diagnosed with a developmental disorder, according to the Autism Alert released by the US Department of Health & Human Services (HHS), the Centers for Disease Control (CDC), and the American Academy of Pediatrics in February 2004. Autism is not a disease but a "condition," often characterized by a failure to bond, lack of social interaction, avoidance of eye-to-eye contact, difficulties in language development, and repetitive behaviors known as stimming (self-stimulation). Milder forms of autism are Asperger's Syndrome, PDD (Pervasive Developmental Disorder) and ADD/ADHD (Attention Deficit/Hyperactivity Disorder. Collectively they are known as Autism Spectrum Disorder (ASD). Sara Augerson was a mother who found that diet changes, treatments for fungal infections, and parasites, were attributing to her son's slow, but obvious recovery from severe autism. "It was a literal fluke that we discovered in Singapore--when our entire family was being treated for parasites--that this medicine would help Michael's autism. Within hours of being treated he improved dramatically. Now I can tell by looking at him if he has another parasite in him."
Sara believes her son's recovery milestones over the years have been a Catch-22. "People don't believe that these kids get better. When Michael starts improving, people say he wasn't autistic to begin with. It was really hard to get anyone to listen to us. There was no methodology to follow. We were in a constant crisis and just running with it."
Answering the need for a protocol to guide parents and practitioners through the varied and growing number of successful treatments for autistic children, the ARI convened its first Defeat Autism Now! conference in 1995. During this think tank summit 30 physicians and scientists--seven were parents of autistic children--identified safe treatments with credible evidence of efficacy. "Once these efficacious treatments are identified, an attempt is made to find why they work, so their efficacy can be improved," said Rimland.
The name of the movement and its protocol, Defeat Autism Now! (DAN!) was in response "to the complacency and lack of urgency that were so evident at the National Institutes of Health, and at the medical schools, where research on the treatment of autism was virtually non-existent, except for experimental trials of various drugs designed for use on adults," testified Rimland to the US House Government Reform Subcommittee on Human Rights & Wellness in November 2003. The theme of DAN! is that nutritional, metabolic and immunologic issues do exist in autism, and indeed are a central part of the problem, and that resolution or improvement of these issues is a prerequisite to success with other therapies such as sensory integration, speech therapy, behavior modification, and special education classes. DAN! believes that the autism epidemic has environmental causes that lead children with biochemical and immunologic vulnerabilities--probably genetic--to develop ASD. "The experience of scientists and physicians within the DAN! movement leads us to the paradox that while the epidemic must spring from common causes, the treatment of children caught in the epidemic demands a thoughtful respect for their individuality. We wish to share with fellow scientists, clinicians, and family members, observation and data that may help our communities take on the responsibilities demanded by an epidemic: a capacity for prompt response to evolving information from direct experience with the situation," writes Rimland, and his DAN! co-founders Sidney M. Baker, MD and John Pangborn, PhD in a DAN! conference syllabus. Michael, who no longer suffers from food and chemical allergies, continues to work with "DAN! doctor" Elizabeth Mumper, MD, an Associate Professor of Clinical Pediatrics and Family Medicine at the University of Virginia. "Michael's problems seem mostly related to allergy/immunology problems with his greatest gains coming after being treated for yeast," said Mumper. "The second day after his first treatment with Sporanox, he began talking. The teachers had to revise his educational programs every three to six months because he was progressing so quickly. He does well when treated chronically with anti-fungals."
Unlike Sara Augerson, whose son Michael was born autistic and therefore is a rare case of Classic Autism (incidence of children who are born autistic are one in 10,000), Carolyn Yount watched her now four year-old son Chandler slowly deteriorate after each round of vaccines at their pediatrician's office. Chandler is a more commonly seen case of Regressive Autism. "At two months he had his first round of shots and he started having stomach problems. At four months he got another round of shots and took another turn for the worse. He would pull his legs up to his chest and scream constantly." "Now in retrospect I realize my son's stomach was being torn up by the thimerosal. When we took him off of the regular dairy formula and put him on soy we saw a remarkable improvement, but still had the stomach issues. None of the many pediatricians we saw got what was going on with him. Then at 12 months he got the MMR vaccine and immediately he broke out in a rash and screamed for two days. At 20 months he was diagnosed with autism by a neurologist." Thimerosal is a mercury-derivative and preservative found in children's vaccines. Yount and her family drove 10 hours from Alabama to Virginia to meet with Dr. Mumper in July 2002. "She told me that he was a very sick little boy and for the first time I saw all of him and he was pale as a ghost with horrendous circles under his eyes with this very distended abdomen. I just broke down because I couldn't believe this happened right before my eyes and I could be in such denial," said Yount. As part of the DAN! protocol, Mumper uses a number of techniques to "chelate" or pull the heavy toxic build-up from Chandler. Heavy metal toxicity is common in autistic children and is thought to be attributable to a genetically vulnerable child's inability to excrete metals resulting from multiple modern sources such as mercury dental amalgams, power plant emissions, seafood like tuna, and childhood vaccines. Mumper emphasizes that strengthening the body to detoxify itself is preferable, and preparing the gut for detoxification through chelation is mandatory. "Chelation is risky if the gut is not in good shape and even then the process requires constant monitoring," said Mumper. Michael Augerson has never required chelation, noted Mumper.
Yount warns parents that the DAN! diet can be "very hard for people who are used to eating out. It took us 10 months to really get the hang of the diet but now his tummy is no longer distended and his bowels are normal and he is sleeping. He takes supplements two and three times a day, as well as B12 injections twice a week. Within two weeks of starting chelation he began using the potty. Right now we have had 11 rounds of chelation in three months and he is finally talking to me.
"We have changed every aspect of who we were before. Now everything we eat is organic and we have a water filtration system in the house, organic sheets, mattresses, hardwood floors. Now we think about everything we used to do, with shock. We didn't realize before how toxic our world is," said Yount.
The DAN!-recommended biomedical treatments have been so successful that 700 families who have employed its guidelines and documented their progress from diagnosis to recovery will make their medical histories, videos and personal interviews available to mainstream media outlets through an "Autism Is Treatable" campaign scheduled to launch in October 2004. DAN! conferences are held twice yearly around the country and serve to educate parents and practitioners and to present the most current scientific research and findings by researchers, clinicians, and of course, pioneering parents. While the DAN! protocol emphasizes rejecting "cookie-cutter" treatments, its scientists have identified "sub-groups" of autistic children that can help parents and practitioners ask questions like, "Is this child primarily toxic, virally infected, or is he/she mostly a gut-disordered child? What role has genetics played here?" According to Jaquelyn McCandless, MD, author of Children with Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorder, "Most children are combinations of all of these and more." McCandless, a board-certified neurologist and psychiatrist, began researching treatments for autism after her granddaughter was diagnosed in 1996. She has written her book in hopes of helping parents become educated and empowered to take action now for their children. While hundreds of physicians around the country have been trained in DAN! protocol, their waiting lists are long. McCandless knows that finding doctors who are educated enough to work with parents is one of the major obstacles to treatment and healing for autistic children. But as McCandless points out in her book, and one glance at a DAN! conference syllabus will show, the autism epidemic is touching many people's lives, including physicians and scientists who, as parents and grandparents of
autistic children, have combined the power of their own experience, intuition and professional training into insightful tools for pioneering treatments for their own afflicted loved ones.
"As a grandmother and psychiatrist, my passion to find answers made me impatient with psychiatry and behavioral medicine's head-in-the-sand attitude that autism is definitely genetic and thus incurable and untreatable except for early intervention and the use of behavior-controlling drugs," writes McCandless. "Many medical doctors still advise patients not to bother with special diets or vitamins and minerals. One doctor insisted that if there was no evidence of mercury in the blood test then there was no point in pursuing the heavy metal issue further, not aware or interested in the fact that the presence of mercury, except for a very recent heavy exposure, will not show up on regular blood tests. "To no avail I pointed out that many of the doctors and researchers who pursue 'new' approaches are parents or grandparents of children with autism and would not be trying these methods on their own kin if they thought they weren't safe and effective." Obstacles to Accessibility
With history presenting over-whelming and consistent evidence that medical science takes decades to catch up with pioneering researchers like those at ARI and the practitioners of DAN! protocol, it is not a surprise to parents that the Food and Drug Administration's website pronounces their children hopelessly incurable and parents who believe otherwise are "desperate, easy targets for unproven therapies and sham products." "Progress in the acceptance of useful medical interventions is painfully slow--it is not uncommon for a safe and effective treatment to be available for decades before it is widely implemented. A recent example is the use of small amounts of folic acid, a very safe B vitamin, as a means of preventing severe birth defects. It is estimated that over 25,000 cases of mental retardation could have been prevented in the US if widespread use of folic acid supplements had been recommended when the discovery was first announced," said Rimland.
In an open letter to the then FDA Commissioner Mark McClelland, MD, the ARI has requested that the government agency rescind its "grossly exaggerated and unjustifiably pessimistic," statements, to reveal the public input prior to the issuance of their policy, and to abstain from enforcing the policies which flow from these statements "until we, and our colleagues, as well as other members of the public have had an opportunity to present the information your agency has ignored."
FDA Public Affairs Specialist Susan Kruzan, pointed out that, "There are no approved treatments of any kind by the FDA for autism." Not even the commonly used pharmaceuticals Ritalin and Risperdal. As part of an ongoing congressional investigation into the autism epidemic, oversight hearings are ongoing and held by Dan Burton (R-IN), Chairman of the U.S. House Government Reform Subcommittee on Human Rights & Wellness in November 2003 and May 2004. The congressional committee has heard from Rimland about the success of the DAN! and from other experts on groundbreaking new treatments that are effectively improving the medical condition of autistic children and adults. "History teaches us that debilitating conditions like autism do not simply go away," states Chairman Burton, who is the grandfather of an autistic child. "I am encouraged that many of my colleagues in Congress, as well as our health officials, are finally starting to wake-up to this realization, and devote the necessary attention and resources to understand, and ultimately cure autism." Rashid Buttar, DO, who is one of 190 US doctors board-certified in clinical metal toxicology, testified before the congressional committee on May 6, 2004 that he had stopped taking referrals for autistic children from pediatric neurologists in 1998, despite the success of his treatments because "the emotional component was overwhelming, just having to deal with the pain and frustration of the parents of these children." Then on January 25, 1999, Buttar's son Abid Azam Ali Buttar was born and he became one of those frustrated parents as he watched his son slip away into the abyss of regressive autism. "The oceans of tears I cried and the hours I spent trying to figure out what was happening to my son are no different than that of any other parent in the same situation except that I am one of 190 US doctors board-certified in clinical metal toxicology . when he would
make eye contact with me his eyes would say, 'I know you can do it Dad.' The expression he would give me, just for an instant, would be that of a father encouraging his son. I thought, if this is metal-related, I should know how to fix this problem." Buttar's pioneering treatments have led to the International Hyperbaric Medical Association and the American Board of Clinical Metal Toxicology collaborating under the supervision of the Oklahoma University Health Sciences for the study of a transdermal DMPS/Glutathione solution he has developed. Buttar has been invited to present his method to a second ARI think-tank on mercury detox in Fall 2004 (the first was held in February 2001). "It has long been known that DMPS is the most efficacious way to chelate mercury, but it required IV administration, which made it very impractical to give multiple times to autistic children. His protocol has the solution applied to the inner aspect of the arms every other day, and this can go on for months," explains Buttar's colleague Kenneth Stoller, MD, Assistant Clinical Professor, Pediatrics, University of New Mexico, and the Medical Director of the School of Medicine, Hyperbaric Medical Center of New Mexico. "There is a subset of the population that cannot clear certain heavy metals from their bodies, and in the case of mercury it causes a great deal of problems in the brain. If you did a hair analysis or urine analysis on these children you would not see mercury (as they can't clear it) until you start giving the DMPS. Once on the protocol, the mercury finally starts moving out of their bodies and then you see it in hair and urine. As the mercury leaves, the children become clinically better. "Using a combination of hyperbaric oxygen therapy, which helps the mercury-stunned neurons come back on line, with the transdermal DMPS, seems to be the best for treating these children. This population subset is the proverbial 'canary in the coal mine'," said Stoller. "When 31 children recover from a devastating disease by a simple transdermal treatment that detoxifies metals, then common sense dictates that perhaps metals are involved," states Dr. Bob Nash, the chairman of the American Board of Clinical Metal Toxicology (ABCMT), in regard to Dr. Buttar's treatment. He adds, "Congress must create a National Metals Task Force by line item funding. This task force could be a resource to the Congress and also establish a Quick Reaction Capability that presently does not exist to address health problems. We can no longer continue to destroy our children's health even as an unintended consequence of a program that meant well. We need action today, not in 5 years."
The US government has finally begun to acknowledge the present and future public health implications of the autism epidemic by establishing the Interagency Autism Coordinating Committee (IACC). In addition, health agencies have begun to fund various autism-related research projects, as well as initiate training programs in order to better enable educators across the country who deal with the increasing incidences of developmental disorders within their student populations. The Cost of Inaction, Action, and the Alternative?
Undertaking alternative treatments can mean exorbitant out-of-pocket costs for parents. "We spend $36 per round for chelation medicine every two weeks. We spend $250 a month on supplements. These are not covered by insurance. We do urine testing after every other round of chelation. The cost is $110 and is covered by insurance. We spend $100 a week on therapists for our in-home program. Other medicines for our son is $75 a month, partially covered by insurance. Obviously the organic/free range food that we eat is more costly than regular food. We must do this to avoid pesticides. Speech therapy and occupational therapy is provided by our local school system," said Carolyn Yount. In a Congressional testimony in June 2002, Dr. Jeff Bradstreet, MD, founder of the International Child Development Resource Center and father of an autistic child, stated, "While no precise studies have attempted to look at the cost of correcting the biological problems associated with ASD, at least one report from England places the custodial costs of ASD in the range of $3 to 4 million per child per lifetime, with a societal cost that would likely be three times the individual cost. The cost of education, medical care, and therapies for behavioral and physical symptoms is staggering. Many of our families report having paid $50,000 per year to care for their child. The Individuals with Disabilities Education Act (IDEA) allows up to $35,000 a year for education of children with autism.
"Much of this burden is already being carried by federal and state programs that provide for disabled children. Custodial care for autism can exceed $100,000 a year. The public education system is literally swamped with children. Any survey of public educators will quickly reveal the suddenness and magnitude of the ASD problem. They lack the therapists and trained special educators to deal with the problem, so children with severe disorders receive nominal meaningful intervention. The further loss of potential future earnings from the ASD children who will likely not be self-supporting is impossibly large to calculate meaningfully. Many parents must quit working to care for the child as well. We, as a nation, are therefore paying and will continue to pay an enormous price for this epidemic.
"ICDRC estimates the minimal cost, in present value, of caring for those 420,000 existing children with autism at $1,260,000,000,000. So over the next 50 years, a little ($260 million is a little?) more than $1 trillion would be required if we stopped creating new cases today. Because autism is doubling every four years, this is likely an overly conservative estimate. The societal cost could easily be $3 to 4 trillion." Currently Stoller and Buttar have met with the US Department of Human Health and Services regarding Medicare reimbursements for proven treatments. "We are prepared to petition Medicaid, with all the scientific literature, to place certain treatments on a list so state programs will stop telling parents to go away. It is true that there is the EPSDT statute which tells state programs to pay for any therapy that corrects or ameliorates, but that is just the law and no one follows the law unless a court forces them to do so," said Stoller. Why Choose Alternative Biomedical Treatments? In her book Children with Starving Brains, McCandless invites parents to visualize the choice of trying alternative treatments or the lack of conventional treatments, to standing on a pier while watching their child drown. "You desperately look for help or a life preserver (a physician or treatments that might work). You find a rope tied to the pier (special diets, nutritional supplements, anti-fungal/anti-viral treatments, secretin, chelation for heavy metal toxicity--all of which you have learned are safe and help many of these children). However, authorities warn you not to use it because it has not been proven that the rope is strong enough (the treatment option has not received final approval by "authorities" who are waiting for reports of completed scientific studies appearing in peer-reviewed journals). Meanwhile your child is still drowning (exhibiting autistic/ASD symptoms). If you were that parent on the pier you wouldn't wait for the completion of the double-blind clinical trials to assure you that the rope is strong enough. You would pick it up and throw it to your child. The worst that could happen is that the rope would break with your child closer to the pier! In real life, numerous parents, some of whom are physicians, have been finding that removing toxic metals is an effective treatment for their children. Parents of ASD children cannot afford to wait for approval of the guiding agencies appointed to protect our children's health to try treatment options these agencies consider "alternative medicine," particularly when the "experts" have nothing better to offer. This is especially true as the parents learn that the very actions they dutifully followed on the recom-mendations of these authoritative agencies may have been the cause of their child's autism, such as accepting the mandate that their newborn be vaccinated with unsafe levels of ethylmercury via the HepB vaccine." "For the first time in his life my son is telling us that he loves us as much as we love him. In an untreated autistic child this is unheard of," said Carolyn Yount about her recovering autistic son Chandler. "For pediatricians to tell parents that there is nothing for them to do is wrong. There is so much we can do." References
1. Rimland, Bernard. Infantile Autism: The Syndrome and its Implications for a Neural Theory of Behavior. 2. Rimland, Bernard. The History of the Defeat Autism Now Project, Biomedical Assessment Options for Children with Autism and Related Disorders, Autism Research Institute, 2002. 3. McCandless, Jacquelyn. Children with Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorder. Bramble Books, 2003. Updated 2004. Correspondence:
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