Published by Oxford University Press on behalf of the International Epidemiological Association The Author 2009; all rights reserved.

International Journal of Epidemiology 2009;38:14151421

Book Reviews
Defeating Autism: A Damaging Delusion. Michael Fitzpatrick. London and New York: Routledge, 2009. pp. 165, 18.99, ISBN: 978-0-415-44981-6.

Michael Fitzpatricks lucid book, Defeating Autism: A Damaging Delusion, chronicles the rise of three interrelated cultural phenomena: (i) awareness of autism spectrum disorders (ASD), (ii) pseudoscientific theories about the causes of ASD and (iii) unorthodox biomedical treatments. Fitzpatrick writes from the perspectives of a parent of a teenage autistic boy and as an experienced general practitioner in the UK. Autism awareness and prevalence began to increase dramatically during the late 1980s and early 1990s as the result of a number of different factors. These included more thorough epidemiological methods using population screening, the introduction of considerably broader diagnostic criteria for autism and related conditions in both the Diagnostic and Statistical Manual of Mental Disorders (DSM-III, DSM-IV and DSM-IVR) and the International Classification of Diseases (ICD-9 and ICD-10), and new screening and diagnostic instruments that employed the broader criteria. Another factor leading to higher prevalence was diagnostic substitution (the use of autism instead of other names, such as mental retardation and seizure disorder). By the 1990s, many children, especially those with Aspergers Disorder, were being diagnosed with autismchildren who might previously have had no diagnosis at all. Others, such as children with Downs syndrome or other clearly identifiable medical conditions were receiving the diagnosis as well. It is also important not to overlook the introduction of autism as a classification in the public school systems in the USA, which resulted in skyrocketing rates of autism, since previously all children with autism were listed in other categories, such as multiple disabilities and mental retardation. The growth of child psychiatry, child psychology and allied disciplines, such as speech and language pathology, occupational therapy and play therapy, and the decreased stigma associated with all forms of childhood disability, facilitated even more diagnoses. The public and political response to the increased prevalence of such a serious childhood onset disability was to interpret increased prevalence as increased incidence. Indeed, the media continue to mistake prevalence for incidence. Unfortunately, given the fact that autism, by definition, emerges before the age of 3 years, and yet the disorder is most reliably diagnosed after the age of 5 years, there are to date no reliable estimates of the incidence of autism,

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exacerbating the problem of examining time trends. Most prevalence studies conducted over the past two decades are not comparable, given that methods, criteria and populations sampled, varied considerably. Yet, the epidemiological publications were sufficient to motivate activists to argue that something given to children in the first months of lifesomething newwas causing autism, and the increase in the number of vaccines given to children over the past 20 years became the obvious target. Othersadvocates (mostly parents of children with autism) and a small number of doctors and scientists working at the fringes of their disciplinesbegan to argue that heavy metals, food allergies, immune dysfunction and other factors were involved.

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The numerous studies eliminating vaccines and vaccine ingredients as causes of autism have done little to shake the anti-vaccine advocates, whose beliefs Fitzpatrick likens to religious faith. Martha Herbert, for example, one of the leading voices in the campaign to link increased autism prevalence with environmental toxins conceives of the child as a polluted being. She assumes that all human beings are today plagued by chemicals and other exposures and stressors, such as information overload, oral antibiotics, and electromagnetic and nuclear radiation. How these factors relate to autism is any scientists guess, but for those who have faith in both the existence of an epidemic and the dogma of essentialist and simplistic environmentalist perspectives, the relationship seems clear. Autism is, of course, one of the most highly genetic conditions in medicine, but Fitzpatrick does an excellent job illustrating the simplicity of the anti-vaccine view that falsely accuses mainstream medicine of denying a role in autism of any environmental factors whatsoever. He also provides a useful list of published environmental theories of autism aetiology, such as television, iPod batteries, prenatal ultrasound, anti-thyroid agents, WiFi, Lyme disease MSG (monosodium glutamate) and stealth viruses. After establishing the foundation for what might be termed autism quackery, Fitzpatrick proceeds to examine nearly every possible therapy introduced to counter the alleged effects of environmental insults, and offers short descriptions of many of the doctors who use them. For Fitzpatrick, the embrace of unorthodox biomedical treatments says more about the parents of the children than the children themselves. Using film, memoirs, advocacy literature and other sources of discourse, he describes a common inability for parents to cope with the possibility that no one is to blame for their childrens condition, and with the narcissistic injury that comes with a child who does not meet your expectations. Parents, he says, begin to mistrust mainstream medicine and search for mavericks who promise cure. The therapies Fitzpatrick describes are, for the most part, included in the protocols followed by medical doctors who belong to DAN! (Defeat Autism Now!), but they were not developed specifically for autism. (The major exception to this is the chelation and Lupron protocol developed by Mark and David Geier, which combines chelation with the use of a chemical that inhibits the production of androgens, and which is employed in medicine for chemical castration in prostate cancer treatment.) Fitzpatrick tells us of the many children who are chelated, put in hyperbaric oxygen chambers, given stem cell transplants and administered a range of vitamin and mineral supplements, antibiotic, anti-fungal, antiviral and anti-inflammatory medications. Special diets abound, many of which are highly restrictive and are said to promote recovery from autism. Many of

these therapies are based on the belief, expressed clearly by a nutritionist, Alex Richardson, in her book You Are What You Feed. According to Richardson, the epidemic of autism is the result of the combination of two things: on the one hand, increasing exposure to potential toxins, from synthetic chemicals, heavy metals, and other environmental contaminants, and, on the other, decreasing intake of many essential nutrients needed to defuse and get rid of those toxins (quoted in Fitzpatrick, p. 117). These therapies are not supported by the peerreviewed scientific literature, but given the premises of the authors and practitioners who support them: they arefrom the natives point of view, to use an anthropological phraselogical and scientifically rational, and given the absence of any other purported cures offered by mainstream medicine, they continue to grow in popularity. Unfortunately, as Fitzpatrick notes, they are very expensive, not covered by insurance, and potentially harmful. Fitzpatrick singles out chelation as especially problematic. Chelation, a procedure designed for victims of serious poisoning, rids the body of heavy metals. Clinicians who believe that mercury causes autism use chelators primarily for mercury detoxification, but often also for the removal of lead and other metals. Tens of thousands of children are chelated each year, and the chelating agents have had serious consequences. One death came to light in 2005, when a 5-year-old autistic boy named Abubakar Tariq Nadama was given an intravenous infusion of EDTA, a chelator, which caused myocardial necrosis. The physician, Roy Kerry, MD, was initially charged with involuntary manslaughter, but the charges were later dropped. Little is, in fact, known about the efficacy, let alone the safety, of chelation. In 2008, the National Institute of Mental Health attempted to study the use of chelation in autism treatment, but the institutes IRB (institutional review board) deemed the study too risky, and denied human subjects approval. Fitzpatrick has produced a powerful and wellwritten book that will be of use to a wide range of readers: scientists, clinicians, mental health care professionals and parents, among others. As a parent, as well as someone who conducts research on autism, I find Fitzpatrick to be the most insightful when he steps away from his role as a physician and takes a broader view of the cultural landscape. Perhaps his most compelling observation is that the concepts of the toxic or damaged child, so integral to the biomedical perspectives that he describes in this book, threaten to denigrate and dehumanize people with autism. The abilities of the autistic person, the joy and reward of being a parentwhether one is the parent of a child with a disability or notoften get lost in the discourses on disease, mistrust and blame. Fitzpatrick wants to make clear to the reader that autistic children are not just medical cases, but real human beings who are part

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of our lives, children who will become adults, with their own voices and their own perspectives on autism. He thus quotes Jim Sinclair, one of the pioneers of the neurodiversity movement: We needed and deserve families who can see us and value us for ourselves not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must for your own

lost dreams. But dont mourn for us. We are alive. We are real. And were here waiting for you.
ROY RICHARD GRINKER E-mail: ifer@gwu.edu
doi:10.1093/ije/dyp242 Advance Access publication 7 September 2009

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Autisms False Prophets. Paul Offit. New York: Columbia University Press, 2008, pp. 328, $24.95. ISBN: 978-0-231-14636-4.

The author of this book, Dr Paul Offit, is the chief of Infectious Diseases and Director of the Vaccine Education Center at the Childrens Hospital of Philadelphia, and the Maurice R. Hilleman Professor of Vaccinology and of Pediatrics at the University of Pennsylvania. These credentials are bulky but relevant, since professional standing is one of the criteria he uses in discussing the witnesses and often the coinvestigators in his book. Indeed, the booksub-titled Bad Science, Risky Medicine, and the Search for a Curedraws on his remarkable breadth and depth of knowledge in an indictment of unsubstantiated claims about treatments and causes of autism. To begin with, suitably, the author sets out his own background and potential biases: he is very much on the side of preserving those proven sources of child health that reside in vaccination. He has in fact been the target of hate mail and other kinds of harassment from some who believe that vaccines contribute to autism. Then he offersfrom his fully disclosed perspectivea detailed account of the characters and the main events that have shaped the controversy over the past decade. Offit traces the recent history of vaccines being put forward as alleged causes of autism to the February 1998 publication in Lancet of a 13-authored paper with the unlikely title Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children.1 This article was based on 12 children referred for bowel symptoms, but selected for investigation because they also had autism or another pervasive development disorder. Clinical histories and assessments, and ileocolonoscopies showing intestinal inflammation, were described. The measlesmumpsrubella (MMR) vaccine was implicated by the observation that, in some cases, symptoms followed closely on vaccination. Within a few years, the report was entirely discredited. Also, it emerged that the first author had been paid for his efforts by a legal firm preparing a case against the pharmaceutical company who made the vaccine. The statement in the paper that the invasive procedures had been agreed to by an ethical review board turned

out to be false. Ten of the 13 co-authors retracted the interpretation in the paper that it showed a possible link to autism. (On my own reading of this article, I found it notable that there were no epidemiologists among the 13 co-authors. Perhaps this explains in part the absence of any systematic control group, and the absence of any standardized method for establishing retrospectively the timing of vaccination relative to onset.) But no matter, the damage was done. Rapidly the scare spread that the MMR accounted for the rise of autism, or of some kinds of autism. A surge of scientific investigations, epidemiological and other