The "Autism Epidemic" & Real Epidemics
An exchange of correspondence with the U.C. Davis M.I.N.D. Institute, 28 March 2005
Distinguished Researchers and Administrators of the U.C. Davis M.I.N.D. Institute:
I am writing to express my concern about the use of the phrase "Autism epidemic" in a recent UC Davis M.I.N.D. Institute press release announcing the CHARGE (Childhood Autism Risk from Genetics and the Environment) study conducted by Dr. Irva Hertz-Picciotto.
The press release ("Autism Epidemic Creates Interest In Potential Mercury Poisoning Links") was published in the March 23 issue of the Schafer Autism Report, which is edited by Mr. Lenny Schafer, a prominent supporter of the hypothesis that widespread vaccine injury offers the most likely explanation for the increased incidence of autism spectrum diagnoses. The SAR claims 20,000 subscribers. Between the press release's title and its text, Mr. Schafer inserted the comment, "This is from a university press release. This is a UC Davis supplied headline. Note the significant use of the E-word (epidemic)."
Although I was relieved to read the release and learn that the word "epidemic" was not supplied by Dr. Hertz-Picciotto, I was nonetheless dismayed to see such an inflammatory phrase issuing from such a prestigious player in the field of autism research. Curious to see whether any M.I.N.D. Institute researchers have posited the existence of an "autism epidemic," I scoured the M.I.N.D. website, reviewed all of the staff biographies and bibliographies, and found no suggestion that this is the case. I was not surprised to learn this, though; it has been my experience that responsible professionals tend to avoid the use of shocking verbiage to describe their work or their theories. However, there are, unfortunately, more than a few non-scientists — most of them proponents of the vaccine-autism causation hypothesis — who broadcast hyperbolic terms such as "tsunami" and "pandemic" to describe the current prevalence of autism (see the January 12 SAR for the particularly crass use of "tsunami").
There is no question that there has been a recent increase in the incidence of autism diagnoses, but that is hardly the same thing as an "autism epidemic." Use of the word "epidemic" implies a conclusion that, to my knowledge, is not based on existing scientific evidence. Furthermore, in its popular usage, the word "epidemic" connotes contagion. Autistic citizens suffer enough from stigma and misunderstanding; how much more might ensue should they come to be regarded as somehow "contaminated"? Although this might seem a far-fetched possibility, the March 21 SAR also recently published material by Dr. W. John Martin, who offered the theory that autism is caused by a "stealth" virus introduced into the human organism by contaminated polio vaccines, and actively solicited research subjects. This may seem like inconsequential fringe science to scientists, but the SAR's audience largely consists of non-scientists, and such speculations are presented side-by-side with descriptions of work being conducted by prominent research institutions.
You are no doubt aware that certain parents of autistic children who believe that their child's autism is a direct consequence of vaccine injury have chosen to engage in class-action litigation against vaccine manufacturers, rather than seek individual redress under the National Vaccine Injury Compensation Program. I have sympathy for parents who have reason to believe that their children have been injured by vaccines, I support the need for continued improvement of vaccines, and I support those who advise parents to make fully-informed decisions about vaccinations. However, I do not sympathize with those who seek to sidestep the need to scientifically prove their suspicions about damage inflicted upon their own children, and to increase the likelihood of a favorable decision by a jury in a high-stakes class-action lawsuit, by engaging in a public crusade aimed at persuading scientists and non-scientists alike that *most* autistic children suffer from "vaccine poisoning." This crusade persists despite the consensus of the scientific community, which to my knowledge has largely refuted this assertion. It is a crusade that draws considerable fuel from those who are categorically opposed to vaccination, as well as by those who are politically opposed to governmental involvement in public health initiatives or quality control in the provision of health care.
Over the past year, the publication of each new medical journal article about the vaccine-autism causation hypothesis seems to be followed by a flood of press releases from plaintiffs' groups, personal injury lawyers and vaccination critics of all stripes, proclaiming that autism is at epidemic levels, and insisting that vaccines are to blame. It is a relentless public relations campaign, and I am dismayed at the possibility that the professionals at the M.I.N.D. Institute might contribute to its success by disregarding the implications of material issued from its public relations office and its effect on popular perceptions of autism.
By lending credibility to the idea that we are in the midst of an "autism epidemic" — even by so tenuous a mechanism as a press release title — the M.I.N.D. Institute also cheapens the meaning of the word "epidemic," and bolsters the efforts of those who use emotionally-charged appeals to market "cures" for autism without adequate, peer-reviewed research. Most of these marketing efforts are targeted towards a population of parents too young to appreciate the true meaning of the word "epidemic," parents who are susceptible to minimizing the threat posed by preventable infectious diseases because they themselves have benefited from vaccination programs, and from their privileged position as citizens of the U.S., to the extent that they have never experienced or witnessed those diseases.
I am mother to two teenage daughters, one with an autistic spectrum diagnosis. I am also the daughter of a polio survivor, and am therefore intimately aware of the lifelong consequences of epidemic infectious disease. I monitor many online autism newsgroups and can assure you that there is a large and growing cohort of parents who have chosen to forego vaccinations and boosters for fear that autism might "strike" their family again. Autism-Mercury is a publicly viewable Yahoo! group that provides an example of the kind of conversation about vaccines that takes place on online discussion groups these days; also, websites such as http://www.taap.info, http://www.nvic.org and http://www.mercola.com are frequently cited as reliable information sources.
Parents who read the Schafer Autism Report are parents who are seeking authoritative information about autism, and they are the very parents who are most susceptible to conversion by panic-merchants and anti-vaccination activists. I urge you as responsible medical professionals to take an active stance against the dissemination of inaccurate and misleading information about autism and about vaccines. I urge you to write to the Schafer Autism Report, and to any other publication that has disseminated the CHARGE press release, to clarify U.C. Davis's and the M.I.N.D. Institute's position on the characterization of autism as "epidemic," and to publicly reiterate the need for parents to consider intelligently — not dismissively — the evidence that points to the need to continue to vaccinate children against preventable infectious diseases, so that real epidemics of such diseases can never occur again.
Reply from Dr. Robert Hendren
From: "Robert Hendren"
Dear Ms. Seidel,
We agree with you that the phrase "Autism Epidemic" is not appropriate for the MIND Institute to use. I will look into the origin of this and do my best to assure that it does not originate with our scientists or public affairs office.
Thank you for bringing it to our attention.
Robert L Hendren, DO
David G. Amaral, Ph.D., Beneto Foundation Professor and Director of Research, M.I.N.D. Institute; Professor, Department of Psychiatry and Center for Neuroscience; Core Investigator, California Regional Primate Research Center
John Brown, Ph.D., Psychologist, Department of Psychiatry & Behavioral Health
Randi Hagerman, M.D., Tsakopoulos-Vismara Professor of Pediatrics; Medical Director, M.I.N.D. Institute
Robert E. Hales, M.D., M.B.A, Chair, Department of Psychiatry, UC Davis Health System
Robin L. Hansen, M.D., Associate Professor, Chief, Developmental-Behavioral Pediatrics; Director of Clinical Programs, M.I.N.D. Institute
Robert Hendren, D.O., Professor, Chief, Child Psychiatry, Department of Psychiatry & Behavioral Health; Executive Director, M.I.N.D. Institute
Nabil A. Musallam, Sr. Associate Director, Hospital & Clinics, Clinical Operations, Managed Care and Contracting
Anthony Philipps, Chair, Department of Pediatrics, UC Davis Health System
Irva Hertz-Picciotto, Ph.D., M.P.H., Associate Professor, Department of Epidemiology and Preventive Medicine
Lauren Plumer, M.D., Developmental-Behavioral Pediatrician, Department of Pediatrics
Claire Pomeroy, M.D., Vice Chancellor for Human Health Sciences, UC Davis; Executive Associate Dean, UC Davis School of Medicine
Mary Beth Steinfeld, M.D., Developmental-Behavioral Pediatrician, Department of Pediatrics
Barry Tharp, M.D., Professor, Department of Neurology and Pediatrics; Chief, Child Neurology, Clinic Director, M.I.N.D. Institute
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