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High Hopes, Shoddy Research and Elusive Therapies for Autism Examined and Exposed

Rapin, Isabelle, MD

doi: 10.1097/01.NT.0000345037.57123.0b

Dr. Rapin is a professor in the Saul R. Korey department of neurology and department of pediatrics at the Albert Einstein College of Medicine in the Bronx, NY.

Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cure. By Paul A. Offit, MD. 328 pages. Columbia University Press 2008

Neurology Today readers who care for children are likely to be aware of some, but not all, of the issues raised in Paul A. Offit's Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cause. Neurologists who treat adults should read this book because they are likely to be asked to give sidewalk consultations by acquaintances alarmed by the vaccine story that plagues autism.

Thanks largely to parental advocacy, autism has achieved such prominence in the lay press and neuroscience publications alike that only recluses would be unaware of the condition's enormous effects on families and on societal resources. These same parents seeking help for their children, and others likely to profit from this notoriety, trumpet the existence of an autism epidemic. The data suggest that increasing public and professional awareness, changing diagnostic criteria, and the realization that early educational intervention improves outcome account for most of the reportedly increased prevalence.

This book explores why parents, seeking in vain for a cure and for an explanation of their child's problem, are so vulnerable to false hopes and to the nasty predators who have from time immemorial always taken advantage of the desperate in our society. The author is a professor of pediatrics and infectious diseases who developed the vaccine for rota virus, which has saved the lives of thousand of babies by preventing a major cause of infant diarrhea. He is also holds an endowed chair at the University of Pennsylvania School of Medicine.

We have learned that the main cause of autism is not brain damage but intricate genetic influences interacting with environmental events and resulting in dysfunction of the widespread networks that support complex human abilities.

Autism has no cure and, until recently, no convincing explanation for its appearance. This made it especially easy for well-meaning but uncritical do-gooders to make therapeutic recommendations founded on entirely anecdotal post hoc propter hoc type evidence, and for quacks to seize upon the opportunity to make a buck.

Because behavior and mood vary from day to day and because the natural history of autism is improvement with maturation, parents are easily convinced that any seemingly logical explanation is true, and whatever treatment (or multiple treatments) they attempt, especially if demanding in effort or cost, seems effective.

Yet Dr. Offit is no reporter for a lurid tabloid or TV news show seeking sensational news to trumpet. Acutely aware that vaccines have done more over the past 150 years to improve human health than any other medical intervention, he became outraged by Dr. Andrew Wakefield's 1998 study in the Lancet that blamed the measles-mumps-rubella (MMR) vaccine for causing autism. Dr. Offit predicted the paper would precipitate a resurgence of measles and its serious complications, and even deaths — a prophecy soon realized.



If it was not attenuated live measles virus in MMR vaccine, perhaps it was trace amounts of methyl mercury (thimerosal) used as a preservative in other vaccines that was the culprit. This theory was promoted by Lyn Redwood and Sallie Bernard, each a mother of an autistic son, neither of them a scientist. They combed the scientific literature and wrote what turned out to be an influential paper in Medical Hypotheses in 2000. In it they listed symptoms of Minimata disease, caused by industrial methyl mercury pollution which poisoned fish and people who ate them, and compared them to symptoms of autism.

Although the comparison was farfetched to anyone who knows these disorders, the paper was publicized in the news media, as well as by influential politicians like Representative Dan Burton (R-IN), grandfather of an autistic boy.

Rep. Burton was not swayed by evidence. He had previously championed Laetrile, an ineffective and harmful drug for cancer; unsuccessfully opposed the ban of ephedra (Fen-Phen) for weight loss in the face of multiple deaths and cases of psychosis; and proposed universal AIDS testing because he was convinced it was highly contagious on contact.

In 2000, Rep. Burton held hearings in which parents of children with autism testified on the deleterious role of vaccines, which convinced several other members of Congress and government officials; among them was Governor Arnold Schwarzenegger, who in 2004 banned thimerosal in vaccines in California, and environmentalist Robert F. Kennedy Jr., who in 2005 published an article in Rolling Stone indicting vaccines and falsely accusing the CDC of covering up evidence of the toxicity of thimerosal.

The CDC and NIH subsequently spent millions of dollars on vaccine research, despite multiple epidemiologic studies from this and other countries showing that MMR vaccine and thimerosal were not causes of autism.

A scientist to the core, Dr. Offit thoroughly investigated and documented all the potential facets of the vaccine disaster. He considers why autism has proven to be such a fertile ground for so many people with unshakable trust in unsupported theories about its cause and also in expensive and often invasive, dangerous, or exploitative treatments. He examines in detail why the public has so much difficulty evaluating research and why they are so easily swayed by eloquence. Dr. Offit notes that even editors of scientific journals are not immune to the lure of making a scoop — in the rush to publish, they may overlook scientific weaknesses, fraud, or conflicts of interest.

Dr. Offit describes how some professionals conduct shoddy or even fraudulent research. Dr. Wakefield's work, for example, was largely financed by lawyers who referred eight children whose parents they represented in suits against the British government and the manufacturers of the vaccines. Dr. Wakefield was discharged from his academic position at the Royal Free Hospital in London and his Lancet paper was discredited by the withdrawal of 10 of its 13 authors.

No doubt there are other professionals who appear to have been sincere in their beliefs, but it is difficult to understand in the face of such an overwhelming lack of evidence.

Neurologists should read this book because it is a good read. More importantly, it is a well-researched historical document about our field and our times and it digs deeply into a puzzling aspect of human behavior that has been with us for centuries: quackery and “alternative medicine.”

In Autism's False Prophets, Dr. Offit highlights the danger and lack of efficacy of numerous unconventional “alternative” treatments, including megavitamins, chelation of heavy metals, hyperbaric oxygen, antifungal drugs, and secretin.

It is clear that this book will not persuade the true believers, but it will inform neurologists on what the public is thinking. Autism's False Prophets is also a sobering indictment of celebrities and the media as it points out that a few chosen words by a persuasive spokesperson, like Oprah, have the power to sway millions. Although the voices of science and medicine will eventually prevail in autism, it may take a laborious and expensive decade or more for this to happen.

©2009 American Academy of Neurology