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Autism battlefront

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Sunday Business Post
28 June 2009

When the letters, e-mails and phone calls began to pour in, Dr Paul A Offit presumed the worst. In the past, the chief of infectious diseases at the Children's Hospital of Philadelphia had received a death threat due to his defence of the safety of childhood vaccines.

He had been criticised for his defence of the vaccine industry by Robert F Kennedy Jr, the nephew of John F Kennedy and a lawyer specialising in environmental litigation.

His vocal opposition to groups promoting research that suggested a link between the MMR vaccine and autism had made him a frequent target of anti-vaccination groups across America.

A publicity tour for Offit's new book, Autism's False Prophets: Bad Science, Risky Medicine and the Search for a Cure, had been cancelled. In the book, he argues that the link between vaccinations and autism was fabricated, and challenges his critics to prove the science wrong, so he was bracing himself for the backlash he expected would follow its publication.

Instead, what he describes as a "silent majority'' of parents of children with autism contacted him. "The reaction to the book was the opposite of what I would have predicted," says Offit. "Prior to its publication there were a number of parents of children with autism who were angry at my outspokenness about the fact that vaccines don't cause autism. I expected the book to galvanise those people, but the opposite was true.

"The parents of children with autism, including those with severe autism, contacted me to say, 'Thank you - I never thought vaccines were the problem and this book confirms what I believe to be true. Jenny McCarthy presumes to represent me, but doesn't'. It was really heartening."

The McCarthy to which the e-mails refer is the American actress and model who, despite criticism from the American Academy of Paediatrics, says she helped her son, Evan, recover from autism as a result of biomedical intervention. Biomedical treatment for autism refers to the process of treating the body's biochemistry through the use of interventions such as vitamins, supplements and wheat and milk-free diets.

Such treatments are based on the belief that the psychological symptoms of the disorder are the result of physical issues caused by environmental factors including vaccines, and that correcting those issues will lead to an improvement in psychological symptoms.

McCarthy has become a prominent anti-vaccine campaigner and, along with her boyfriend, actor Jim Carrey, is at the forefront of Generation Rescue, an autism organisation which advocates treating autistic children with wheat and dairy-free diets, vitamins and chelation therapy to remove environmental toxins.

"Autism is not primarily a genetic disorder," McCarthy says in an online video address.

"It's caused by vaccine-related toxins including mercury, aluminium, ether, antifreeze, human aborted fetal tissue and pesticides."

In fact, the cause of autism remains unproven and, according to Offit, the gap between opinion and scientific data allows for misleading assertions to be presented as fact. "The cause or causes of autism are unknown, and there still remains no clear treatment for the disease. As long as that's true, myths and misinformation will flourish," he says. "That misinformation will only go away when the cause or causes of autism become clear."

The term autism covers a group of conditions known as autism spectrum disorders (ASDs).Autism is usually diagnosed by the time a child is four years old, but the autism spectrum is broad and the condition affects each person differently, and to varying degrees. Those affected are likely to be socially unaware and uncommunicative; are unable, in many instances, to read facial signals or body language; and tend to engage in repetitive behaviours.

The suggested link between vaccines and autism first received worldwide attention in 1998,when British gastroenterologist Andrew Wakefield published a study claiming to show that the MMR vaccine caused autism in some children. That research was subsequently discredited, and scientific evidence has confirmed that the MMR vaccination does not increase the risk of autistic spectrum disorders in children.

There is no single treatment protocol for all children with autism, but most individuals respond best to highly structured behavioural programmes. The US National Institute of Child Health and Human Development Lists Applied Behaviour Analysis (ABA) among the recommended treatment methods for autism spectrum disorders.

ABA treats the symptoms of the disorder, and in the intensive, highly structured programme, children receive positive reinforcement for initially learning simple actions such as identifying colours. They then gradually work up to more advanced activities that target deficits in learning, language, play interaction and attention.

However, the proponents of biomedical treatments - in particular doctors with the Defeat Autism Now (DAN) organisation - believe there are physiological conditions at the core of autistic disorders that must be addressed before therapies such as ABA can be of benefit.

DAN doctors believe the main issue for autistic children are their permeable intestinal tracts, or 'leaky guts', which allow undigested food and toxins to enter the bloodstream. The DAN treatment regime involves a combination of changes to the diet and implementation of vitamin supplement therapy as a means of producing changes in autistic behaviours.

In her latest book on autism, Jenny McCarthy has teamed up with Dr Jerry Kartzinel, the doctor who she says "recovered'' her son from autism. The book, Healing and Preventing Autism, provides information about biomedical treatment from diagnosis, dietary interventions and environmental changes in the home, to advanced therapies that biomedical doctors use.

But, according to Offit, these treatments lack any biological basis. "None of these treatments has ever really been shown to work," he says. "Certainly there are well-meaning doctors who offer these treatments actually believing that they are making a difference, but I do think there is also a certain level of charlatanism and quackery that surrounds this issue, and takes advantage of parents who are desperate to do something. False hope is a bad thing."

Kartzinel disagrees. "What is false hope? I think for parents there is nothing false about hoping that their ill child will have a regular life. Just because a child has an autism diagnosis does not mean we stop taking care of them. These people that have these cutsey little sayings don't know their head from a horse's behind. Try walking a mile in our shoes some day."

Chelation therapy, which forms part of the DAN treatment regime, has become one of the most controversial treatments for autistic children. It is used to purge heavy metals from the body and involves introducing a synthetic amino acid called ethylene diamine tetra acetic acid (EDTA) into the bloodstream.

The compound acts like a chemical magnet, attracting minerals and lead from tissues, which are then excreted from the body in urine. In its most aggressive form, chelation treatment is performed intravenously, but most parents give their autistic children a milder, oral medication or a cream that is absorbed through the skin.

The underlying rationale for this type of treatment is that heavy metals, such as mercury or lead, can cause neurodevelopmental disorders in a subset of children who lack the genetic ability to excrete heavy metals from their system. Parents who blame their children's autism on mercury from vaccines hail the treatment as miraculous, with many claiming chelation has helped cure their children's autism.

"If the child has been poisoned inadvertently through maternal consumption of fish, amalgam fillings in their mother's mouth or vaccines which contain thermisol or mercury preservatives, what do we know in 2009 that can safely facilitate the removal of these toxic materials from the body?" says Kartzinel. "That's where chelation comes in and can remove a heavy metal accumulation."

But Dr Nancy J Minshew, an internationally recognised expert in autism and director of the University of Pittsburgh's Centre for Excellence in Autism Research, says the usefulness of chelation therapy in treating autism is nil.

"There is no theoretical basis for this to be of benefit in autism," she says. "The human subject protection committee at the US National Institute of Health considered this treatment too dangerous, and would not approve a trial of chelation."

The Irish Autism Alliance (IAA) says it has no concerns about recommending chelation therapy to its members. "Some of the directors of the charity are not as convinced that it works for children with autism as others," says spokesman Marc de Salvo.

"We would not recommend chelation treatment intravenously, but would see no problem with chelation taken orally or transdermally under the supervision of a doctor experienced with the therapy."

The IAA has been calling for funding to investigate all possible ways of helping children and adults with autism for several years. "There are no votes in autism, therefore our children and adults are always going to be ignored. We have come to accept this; it's away of life for us, like it is for so many others living on the fringes of society," says de Salvo.

"But society as a whole needs to address this issue. With one in 50 boys on the autism spectrum unable to work, the financial burden that autism will be to future taxpayers will make this recession look like a blip."

De Salvo says the condition of his autistic daughter, Jessica, improved after undergoing chelation therapy. "Our family's experience of chelation was very positive," he says. "We followed a programme outlined by Dr Gabriel Stewart and saw an improvement in Jessica's overall abilities. She did not recover from autism, but she made progress in several ways."

Stewart runs Ireland's only dedicated chelation clinic, which is nestled between family homes in a quiet suburban housing estate in Castleknock in west Dublin. The clinic offers the treatment for a number of conditions, including heart disease, circulatory disorders, diabetic arterial disease and autism.

Stewart trained in chelation therapy at the American College for Advancement in Medicine in Los Angeles, after qualifying as a doctor from University College Galway and working as a GP in Canada for over 20 years.

"Most doctors' perception of chelation therapy is more or less what mine once was - wouldn't everyone be using this if it was any good? But it's the safest treatment possible, safer than any prescription that your GP might write out for you, once the protocol is followed," he says.

"There is scientific dishonesty among the hierarchy of the medical profession when they refer to this therapy as dangerous. The simple fact is that the more orthodox treatments are very profitable to drug companies." According to Stewart, the majority of parents of autistic children contact the clinic as a result of positive recommendations from others. A two-month treatment programme for a child costs €155 excluding nutritional supplements, and treatment can take from six to eight months. Intravenous chelation therapy is not performed on autistic children at the Castleknock clinic.

So far, Stewart has treated a couple of hundred autistic children with chelation therapy. "One-third make excellent progress, another third make very good progress, and the remaining third don't seem to get anywhere with the treatment," he says.

There is no scientific evidence for the benefits of chelation therapy in autism - or any other condition - and little information about its risks. Late last year, the National Institute of Mental Health, a US government agency, cancelled plans for a study of chelation therapy, deciding the money would be better used testing other potential therapies for autism.

Stewart believes critics of the treatment formpart of what he refers to as "the medical industrial complex monopoly''.

"The hierarchy, particularly the American Medical Organisation [AMA], is basically an oligarchy, and the close relationship between the Food and Drug Administration, the AMA and the pharmaceutical industry is such that just a few people control what goes on in medicine today. They don't accept anything unless it's drug-related and generates profits," he says.

The "bully pulpit'' is how Arthur Allen, author of Vaccine: The Controversial Story of Medicine's Greatest Lifesaver, describes the advocacy groups and doctors who claim that chelation cures children. "Many parents have almost nowhere to turn, which is where the alternative people come in," he says.

"They offer understanding, simple explanations, bad guys to blame, and 'therapies' to 'heal', and then they reap the profits. Most of their therapies - although not all of them - are pretty harmless even if they are a waste of money."

For parents of an autistic child who are unsure whether they should explore alternative treatments, Minshew has this advice.

"Parents should be very guarded of their child's time, efforts and tolerance of unpleasantness and pain. I would not spend those resources lightly. I would seek those treatments for which there is scientific support and avoid those that are experimental and costly.

"My advice is to get an accurate diagnosis and an autism-appropriate school environment, and to work to promote your child's social, language and play abilities, but also their emotional understanding and flexibility."

Offit agrees: "As a parent of an autistic child, it is incumbent upon you to seek out the best information you can about the current state of knowledge about this disorder. And the first person I would go to is an autism expert - not a celebrity."

Are rates of autism increasing?

At the heart of the debate is the question of what is causing the increase in the number of children with autism spectrum diseases. Current figures estimate that one in 166 people in Ireland has an autistic spectrum disorder, compared with one in every 2,000 ten years ago.

Worldwide, there has been a dramatic increase in autism among school-aged children, and the most recently published study into rates of autism concluded that a significant number of children with autism and related disorders could be undiagnosed.

A Cambridge University team looked at existing diagnoses, and carried out recognised tests to assess other children. Of the 20,000 children studied, 1 per cent had an autistic spectrum disorder, 12 times higher than the rate 30 years ago.

The researchers say that, if the findings were extrapolated to the wider population, for every three known cases of autism spectrum disease, there may be a further two cases that are undiagnosed. "I think the recognition rate is increasing, but not the actual incidence," says Dr Nancy J Minshew. "We still have serious problems with under-recognition of verbal children, adolescents and adults with autism. Until recently, the vast majority of clinicians and most autism researchers thought that a person could not have autism if they spoke in phrases or sentences, and yet that is true of two out of three of those affected by autism.

"In addition, individuals with atypical autism (PDDNOS) or Asperger's disorder were not being diagnosed as such – they were receiving other diagnoses, but not autism spectrum disease. Although diagnostic accuracy is improving, it is not great and it varies widely – depending on geographic location and local expertise."

However, Dr Gabriel Stewart, of the Chelation-Ireland Clinic, disagrees. "There are those who will tell you that the condition was not recognised years ago, but professionals in the field use the same criteria now, yet have found that the incidence has increased six-fold," he says. "I think environmental pollution and the overuse of antibiotics are two of the main reasons causing the rise in the rate of autism."

Dr Louise Gallagher, a clinical senior lecturer in psychiatry, leads the autism genetics group in Trinity College Dublin, and is a consultant child and adolescent psychiatrist at the AMNCH Hospital in Tallaght.

The group is involved in a number of international collaborations in autism genetics research, including the autism genome project.

"Increases in the rates of autism are possibly due to a variety of factors, including the reclassification of cases which were previously described as general learning disability, and changing diagnostic procedures which make previous epidemiology data difficult to interpret. We don't have the hard evidence that rates have truly risen, and this might be hard to prove – even if the public perception is that they have."

Is autism reversible?

JB Handley, the founder of Generation Rescue, claims that autism is "treatable, reversible and nothing more than mercury poisoning''. Handley says that his organisation has helped "recover'' thousands of children from autism, and continues "to prove that autism is reversible''.

But Dr Nancy J Minshew believes the reality is more complicated. "Many children with autism spectrum diseases will show improvement, and this improvement can be small or it can be very large. Whether these children are 'cured' or not depends on the yardstick," she says.

Minshew believes that Generation Rescue is simply taking advantage of naturally occurring events. "This natural improvement and the natural variability of autism spectrum diseases has always been recognised," she says.

"Studies have shown that behavioural interventions can improve outcomes more than no behavioural intervention in many, but not all, children. In the not so distant future, cognitive and biological interventions will also become available and will hopefully provide even greater improvement.

"However, the autism spectrum disorders are about disturbances in the events of brain development.

The goal of intervention is not to reverse brain development but to promote brain development, so using the term 'reversible' is not a good fit. However, I suspect that what is now being interpreted as reversible is the greater recognition of children who will become verbal and, hopefully, the identification of verbal individuals who are now adults. These groups have a prognosis for greater improvement throughout their lives."

Vaccines and autism

There has been a marked increase in immunisation uptake rates in children in this country. According to figures published last month by the Health Protection Surveillance Centre, uptake rates for the MMR vaccine have reached 90 per cent, the highest rate on record, but still below the optimum 95 per cent needed to ensure sufficient immunity across the population.

"Vaccines don't cause autism," says Dr Nancy J Minshew. "Vaccines were designed to prevent death and major morbidity. Yet much of the media does not publish the science side of this issue, and instead showcases sensationalist possibilities. The result is that vaccination rates are dropping across the United States, diseases we have not seen for a long time are reappearing, and children are needlessly dying."

Paul Offit is also concerned that claims presented as fact continue to dominate much of the discussion about autism in the media.

"When you have celebrities saying that vaccines are made by pharmaceutical companies who are evil and only have a financial interest, the media gets seduced by the celebrity and doesn't necessarily examine whether the story is accurate," he says. "That is what makes it hard for parents to get good information."

Newsweek magazine recently took a critical look at the sort of medical claims made by guests on the Oprah Winfrey show. Among those singled out was Jenny McCarthy, who used a recent appearance on the programme to claim that the MMR vaccine had caused her son's autism.

Despite overwhelming scientific evidence that there is no such link, McCarthy's comments passed "virtually unchallenged'', according to Newsweek's article.

Amid mounting controversy, Winfrey issued a statement claiming her audience was educated enough to make their own decisions about healthcare.

"For 23 years, my show has presented thousands of topics that reflect the human experience, including doctors' medical advice and personal health stories that have prompted conversations between our audience members and healthcare providers," the statement read.

"I trust viewers, and know that they are smart and discerning enough to seek out medical opinions to determine what may be best for them."

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