Parents pioneer alternative paths to recovery
The documented epidemic of autism
Same song, second verse
Moving forward, outside the box
US Congress
investigates successful treatments
The cost of
inaction, action, and the alternative?
Parents can choose to act now
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 fourteen years, I feel normal. Other people don't see me as normal yet. I would like it 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 Augerson, 14, in June 2004. Michael, whose parents were told he would be institutionalised, has been healed through biomedical treatments and has been mainstreamed into a public school where he is an honour roll student.
Parents pioneer alternative paths to recovery
When Michael was diagnosed by a neurologist with severe autism at age three, he did not recognise 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.
Like many parents of autistic children, Sara was left on her own to discover through her mother's intuition and observation what did and didn't help Michael's symptoms. She observed that diet changes, treatments for fungal infections and parasites were attributing to her son's slow, but medically documented 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 for treatments. We were in a constant crisis and just running with it.'
Sara and her family are one of thousands of families who have discovered successful treatments for their children's autism and shared their successes with other parents and researchers at the Autism Research Institute, a San Diego-based nonprofit and world centre for research and information that has tracked promising treatments — discovered by parents and researchers — 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.
Until 1964, when ARI's founder Bernard Rimland, PhD, released his groundbreaking book, Infantile Autism: The Syndrome and its Implications for a Neural Theory of Behaviour, the current medical belief was that autism was caused by an unloving ‘refrigerator' mother and the sanctioned 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 towards his mother, whom the psychotherapists were positive had caused his autism. There were 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,' said Rimland.
Rimland's book, 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.
Rimland went on to found the Autism Research Institute that has independently researched and chronicled these successful treatments over the past 40 years. In October 2004, over 1,000 families presented their children's medically documented recoveries from autism to the public and media at the annual ARI Defeat Autism Now! conference in Los Angeles, California.
The documented epidemic of autism
From the 60s to today, the rate of autism has skyrocketed in the United States 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, the Centres for Disease Control, and the American Academy of Pediatrics in February 2004. Over 30,000 Australian children have autism, with a dramatic increase of more than 200% in diagnoses over the past 10 years in Australia.
Autism is not a disease but a ‘condition' often characterised by a failure to bond, lack of social interaction, avoidance of eye-to-eye contact, difficulties in language development, and repetitive behaviours known as stimming (self-stimulation). Milder forms of autism are Asperger's Syndrome , Pervasive Developmental Disorder and Attention Deficit/Hyperactivity Disorder . Collectively they are known as Autism Spectrum Disorder.
While cases of autism have exploded over the last 40 years, medical treatments have not. Today, still abandoned by mainstream medical practitioners, parents and even grandparents — many of whom are scientists and physicians themselves — have consistently remained the pioneers of successful treatments and even cures. Many of these parents have worked with the scientists at the Autism Research Institute to create the Defeat Autism Now! protocol that is freely shared with other suffering families.
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 congressional subcommittee is currently investigating alternative treatments for autism.
‘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,' said Rimland.
Jaquelyn McCandless, MD, author of Children with Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorder , and 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 to become educated and empowered to take action now for their children.
‘As a grandmother and psychiatrist, my passion to find answers made me impatient with psychiatry and behavioural 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 behaviour-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.'
With history presenting 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 US 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 prescribed pharmaceuticals Ritalin and Risperdal are approved for treating autism,' she noted.
Moving forward, outside the box
Unlike Sara Augerson, whose son Michael was born autistic and therefore is a rare case of Classic Autism, Carolyn Yount watched her now four-year-old son Chandler slowly deteriorate after each round of vaccines at their paediatrician's office. Chandler is a more commonly seen case of Regressive Autism (incidents of children who are born autistic are 1 in 10,000 while incidents of children who become autistic after birth are 1 in 166).
‘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,' said Carolyn. ‘Now in retrospect I realise my son's stomach was being torn up by the thimerosal. At 20 months he was diagnosed with autism by a neurologist.' Thimerosal (known as thiomersal in Australia) is the neuro-toxic mercury derivative used as a preservative in some children's vaccines.
Because DAN!-trained doctors are still rare, in July 2002, Yount and her family drove 10 hours from Alabama to Virginia to meet with Elizabeth Mumper, MD, an Associate Professor of Clinical Pediatrics and Family Medicine at the University of Virginia. 'Dr. Mumper told me that Chandler 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.
In addition to switching Chandler to the DAN! diet (casein and gluten-free), Mumper treated Chandler for mercury-toxicity. 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 mercury and aluminum in childhood vaccines.
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,' said Yount. ‘We have changed every aspect of who we were before. Now everything we eat is organic and we have a water filtration system on the house, organic sheets, mattresses, hard wood floors. Now we think about everything we used to do with shock. We didn't realise before how toxic our world is.'
US Congress investigates successful treatments
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 US House Government Reform Subcommittee on Human Rights & Wellness in November 2003 and May 2004. The congressional committee heard from Rimland about the success of 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 diseases like autism do not simply go away,' states Chairman Burton, whose congressional investigations into mercury and autism over the past years were inspired by his autistic grandson. ‘I am encouraged that many of my colleagues in Congress, as well as our health officials, are finally starting to wake up to this realisation, and devote the necessary attention and resources to understand, and ultimately cure autism.'
One of the most poignant stories of a parent fighting for their child's recovery from autism was presented to Burton's committee by Rashid Buttar, DO, on May 6, 2004. Buttar testified that he had stopped taking referrals for autistic children from paediatric neurologists in 1998, despite the success of his hyperbaric oxygen 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 Buttar became one of those frustrated parents as he watched his son slip away and into the din 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.”
Not only did Buttar's son fully recover from autism, but 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 to research and provide this treatment to autistic children.
The cost of inaction, action, and the alternative?
In a US Congressional testimony in June 2002, Dr. Jeff Bradstreet, MD, founder of the International Child Development Resource Centre 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 US$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 behavioural and physical symptoms is staggering. Many of our families report having paid US$50,000 per year to care for their child.
‘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 US$1,260,000,000,000. So over the next 50 years, a little more than US$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 US$3-4 trillion.'
In her book Children with Starving Brains , McCandless invites parents to visualise the choice of trying alternative treatments or the lack of traditional 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 that 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 “traditional experts” have nothing better to offer. This is especially true as the parents learn that the very actions they dutifully followed on the recommendations 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 son Chandler. ‘For pediatricians to tell parents that there is nothing for them to do is wrong. There is so much we can do.'
Resources
– Autism Research Institute
– Defeat Autism Now!
Find a practitioner trained in the DAN! protocol inside or outside of the US.
Note that at this stage there are too few DAN! doctors and most have waiting lists. Parents can take heart in the fact that they can get a head start by trying a few safe at-home treatments, without the need to consult a physician, while they wait for an appointment. The best results are seen in children who receive both early behavioural intervention and DAN! type biomedical treatments. Recommended at-home treatments include:
• High doses of vitamin B6 and magnesium
• High doses of dimethylglycine (DMG)
• A gluten-free/casein-free (GF/CF) diet
– The Mercury In Medicine Report
US Congress Subcommittee on Human Rights and Wellness Committee on Government
Reform
http://www.vaccinationnews.com
DailyNews/2003/May/05
MercuryMed5.htm
– Australian Vaccination Network
– The Coalition for Safe Minds