Report Alleges Cover up of Infant Deaths Post Vaccination
The “Pan” Calling the Kettle Black!

The Autism Literary Underground

ReceptionNOTE: Thank you to AofA contributor Jonathan Rose. This article is used by permission of The Pennsylvania State University Press.

RECEPTION:  The Official Journal of the Reception Study Society; Vol 9, © 2017 The Pennsylvania State University, University Park, PA

By Jonathan Rose

Abstract: Though most physicians and public health officials deny that vaccination can cause autism, many autism parents believe there is such a link, and many of them resort to alternative treatments. This paper takes no position on these controversies, but it uses the methods of reception history to explain how this “underground” movement has gained traction in the face of fierce opposition from the medical establishment and the mass media. The movement belongs to a long tradition of do-it-yourself medicine, which urged patients to read medical literature and treat themselves. In various strains of alternative medicine, patients have to take charge of their own healing based on what they read. Consequently, the history of vaccine skepticism must consider the history of reading. Large-scale surveys of vaccine-hesitant websites and parents, and an intensive study of the reading done by six autism parents, reveals that these parents read extensively and critically both refereed medical literature and Internet postings by other autism parents. They are not “antiscience,” but they are producing and consuming literature about autism and interacting with each other on social media.

 

It can be a frighteningly controversial question, one that often chills the room when it is raised, and at first glance it does not seem to belong in a literary journal: Has the current autism epidemic been caused by vaccination? You can relax: this article will not attempt to answer that question. My aim here is to understand why so many of us have arrived at the conclusion (or at least suspicion) that there is a vaccine-autism link. And that is indeed a question of literary reception, which can be better understood through the methods of the historiography of reading.

            According to the most recent survey, 31 percent of all Americans agree that vaccines can cause autism, a belief that is still more common among blacks (44 percent), lower-income families (34 percent), and 18-to-29-year-olds (36 percent).[1] The last is a key demographic, given that they have or probably will have young children. And these figures may be underestimates: the polled are sometimes reluctant to express socially unacceptable opinions to pollsters. In the same poll another 39 percent said that vaccines “probably” do not cause autism and just 31 percent “definitely” believed that: that is, about 70 percent are not fully confident that there is no connection. In another study as much as 77 percent of American parents expressed some concerns about childhood vaccinations.[2] In a 2010 poll parents ranked vaccine safety as their top priority for childen’s health research, rated “very important” by 89 percent.[3] Yet another survey found that even when pediatricians used the language of professional authority (“Well, we have to do some shots”) 26 percent of parents offered at least some resistance to the prescribed vaccinations; but when the doctor used language suggesting that the decision was ultimately up to parents (“What do you want to do about shots?”) fully 83 percent of parents expressed reservations[4]—statistics that strikingly illustrate how language can tip the balance of power between laypeople and professionals. Most of us say we support childhood vaccination, most of us vaccinate (or partly vaccinate) our children, and at the same time most of us harbor some concerns, whether or not we choose to admit them.

            In addition to the very large number of quiet doubters, there is a much smaller (but still considerable) cadre of activists who openly and militantly challenge mainstream opinion about vaccination. Many of them are autism parents, supported by a few maverick physicians, more than a few nurses, and some autistic adults. Some entirely abstain from vaccination and proudly call themselves “antivaccinationists.” Others reject that label and take a less radical stance, calling for fewer and safer vaccines. But all generally believe that vaccination should be voluntary, and that public health professionals greatly underestimate the harmful side effects of vaccines. Some of these activists are themselves medical or scientific professionals, but theirs is fundamentally a movement of amateurs supported by no major professional organization, with very limited financial resources. These skeptics have scarcely any access to the mass media, which generally treats them as pariahs and dangerous subversives. They therefore bypass the major media outlets and reach their readers mainly through the Internet, and on that front their efforts are impressive. One recent sweep of the Web uncovered 4,757 websites critical of vaccination, of which 62.2 percent specifically state that vaccines are a cause of autism (though not necessarily the only cause).[5] These sites together generate a vast body of literature separate from (though by no means ignorant of) professional medical literature. In many ways they resemble the samizdat that flourished in the final years of the Soviet Union, or the illegal Enlightenment books that circulated widely in prerevolutionary France, as chronicled by Robert Darnton in The Literary Underground of the Old Regime.[6]

            Arrayed against this not-very-well-organized guerilla army in defense of current vaccination policy stands a solid phalanx of public health agencies, medical organizations, the mass media, the pharmaceutical industry, nearly all prominent politicians (as always, Donald Trump is an exception), and the Bill and Melinda Gates Foundation. Their combined economic and political power is practically limitless, and they claim that the science supporting the safety and effectiveness of vaccines is rock solid. Nevertheless, as they ruefully admit, their campaigns to build public confidence in vaccines have been ineffective or (in some cases) have backfired, while the vaccine skeptics, who appear to be hopelessly outgunned, have been making remarkable headway. For two Ann Arbor pediatricians, this is a baffling and frustrating problem in reception: more and more patients don’t believe the reassurances published on the Centers for Disease Control webpage. Persuasion having failed, these doctors recommend coercion as the only alternative: compulsory no-exceptions vaccination for all children, apparently ruling out even medical exemptions. But at the same time, they concede that the skeptics have understandable reasons to be skeptical:

There is mistrust of the medical establishment and its historically unseemly ties with large industry. There is awareness of the long history of unethical conduct in both scientific research and everyday medical practice, which has led often to the exploitation of vulnerable populations. There is, above all, a profound discontent with the current medical and cultural landscape, marked by overmedicalization of normal processes [and] nonholistic care fixated on signs and syndromes rather than whole people shaped by their social, emotional, and physical environment.[7]

They are quite right to see a historical dimension to this problem, because the tension between professional and amateur medicine can be traced back centuries. It began long before the current autism epidemic, before even Edward Jenner, and reviewing that historical context is essential to understanding the reading practices of what might be called the Autism Underground. We can then use the methods of reception history to explain how this grassroots movement has gained traction in the face of fierce opposition from the medical establishment and the mass media.

            Under a regime of professional medicine, patients don’t have to read anything; they can even be illiterate. They only have to follow the doctor’s orders. But a variety of alternative medical traditions make the patient an equal (or more than equal) partner in his or her own treatment, and that requires a regimen of broad reading. Do-it-yourself medical handbooks for lay readers are almost as old as printing technology, which made their production and dissemination possible. If, as the early Protestants argued, readers could find spiritual salvation in Scripture without professional intermediaries, likewise they could find bodily health in books, if those volumes pointed them toward the natural foods and herbal remedies that God had surely provided.[8] In 1539, the same year that Henry VIII allowed the first legal publication of an English Bible, Sir Thomas Elyot issued Castell of Health, which became one of the most reprinted handbooks of self-doctoring. Though he was not a doctor, Elyot had read and synthesized all the standard medical texts. And he charged that Latin medical jargon, just like the Latin Bible, was simply a coding device designed to protect a professional monopoly and keep knowledge out of the hands of the common reader. Sure enough, in 1566 Salisbury doctor John Securis warned that “If Englyshe Books could make men cunnying Physitions, then pouchemakers, threshers, ploughmen and coblers mought be Physitions as well as the best yf they can reade.” It was simply unfair (Securis protested) that we “bestow so much labour and study all our lyfe in the scholes and universities, . . . with our great coste and charges,” only to find “a pedlar, a weaver, and oftentymes a presumptuous woman” stealing our business.[9]

            The English Revolution of the 1640s brought another surge of popularizers, for whom the democratization of medicine and politics went hand in hand. Nicholas Culpeper fought for the Roundheads in the Civil War and published a popular pharmacopoeia, both for the cause of “THE LIBERTY OF THE SUBJECT” (his trumpeting). By the eighteenth century, household manuals written by Englishwomen for Englishwomen were offering clear step-by-step instructions in basic surgery.[10] As Roy Porter notes, health guides were produced by political radicals who “embraced the cause of the people, and propounded an Enlightenment faith in human betterment, to be achieved by the defeat of vested interests, the progress of science, and the diffusion of useful knowledge. Each diagnosed ill-health as symptomatic of the evils of the ancient régime body politics, tolerated by the nepotism, toadyism, and incompetence of a medical profession moved by love, not of health, but of wealth. All believed the rights of man included the right to health, indeed, the right to its self-management.”

            This was the message of the much-reprinted Domestic Medicine (1769) by Scottish physician William Buchan, a supporter of American independence and the French Revolution. He relentlessly attacked the medical establishment and practically welcomed their hatred, for “whoever has dared to think for himself, in matters relating to health, and was not of the faculty, has been looked upon as an intruder, and held up to ridicule.” Buchan stopped short of saying that conventional doctors were entirely redundant, but he did affirm that, “in nineteen cases out of twenty . . . the patient may be his own physician,” and in the twentieth case, the patient should still be an informed medical consumer. Echoing American physician Benjamin Rush, he proclaimed that “It is no more necessary that a patient should be ignorant of the medicine he takes to be cured by it, than that the business of government should be conducted with secrecy in order to insure obedience to just laws.”[11]

            Indeed, whenever a scientific establishment is created, scientific insurgents are bound to challenge it. In France in 1666, Jean-Baptiste Colbert created the Académie Royale des Sciences, with the aim of professionalizing and monopolizing scientific research. But by the eighteenth century public fascination with science had created a demand for scientific literature that the Académie alone could not satisfy. In the years leading up to the Revolution, that demand gave rise to a cadre of alternative scientists. In stark contrast to the aloof and elitist Académie, they engaged much more directly and interactively with their lay audiences. Without a royal imprimatur, they published their own books and sold them from their own homes, where readers could actually meet authors face to face. That made the writer–reader relation even more immediate and authentic than the Internet. The alternative scientists further enhanced that interactivity by corresponding with readers, teaching classes open to all comers, and even offering to help readers build their own scientific apparatus. And if the Académie dismissed them as “quacks,” they asserted that their work was validated by reader reception. As an advocate of breastfeeding proclaimed, “There are ten of you who wish that I am wrong, but ten thousand who wish that I am right.” Women who practiced medicine were (needless to say) ridiculed by the authorities, but they likewise bypassed the Académie by publicizing their work in books and newspapers. “By bringing their practice to print,” Margaret Carlyle concludes, “enterprising women succeeding in staking out their claim to expertise in a growing and increasingly consumerist, legislated, and policed medical milieu, where the boundaries between ‘expert’ and ‘amateur’ knowledge traditions were becoming increasingly blurred.”[12]

            In colonial America—where there were few doctors, no medical establishment, a widely dispersed rural population, and a culture of self-reliance—amateur medicine was a necessity. Nine of the first eleven books printed in America by 1720 were self-help health guides. The works of Nicholas Culpeper and William Buchan sold hugely, but once Americans began writing their own handbooks, they carried medical democracy still further. Readers were addressed as “you” rather than “the patient,” and every effort was made to substitute plain language for jargon.[13] The target audience was predominantly female—housewives and midwives. And these handbooks frequently recommended African and American Indian folk remedies, in addition to conventional European medicine.[14] Moreover, practically everyone owned almanacs, and these commonly included sections offering useful advice on home remedies.[15]

            In Britain an alternative medical press sprang up after 1850, published by veterans of the Chartist movement and Owenite socialism, and addressed largely to working-class readers. Whereas conventional allopathic doctors still relied heavily on bloodletting, mercury, opium, and not very hygienic surgery, these alternative publications promoted a variety of other approaches (e.g., herbal remedies, hydropathy). They agreed that the patient had to be an active and informed participant in his own healing, and they all embraced a democratic faith in making medical knowledge accessible to everyone. “To mystify, shut up in the schools, and make private property of that knowledge, which of all others ought to be universally taught is a wrong the deepest and most injurious to society,” warned medical botanist and ex-shoemaker John Skelton. As one water-cure woman put it, her aim was “to teach patients to cure themselves—to make them independent of us.”

            The populist medical movement also grew deeply skeptical of vaccination. Bypassing establishment newspapers and medical journals, British antivaccinationists disseminated their message through ingenious alternative media that remarkably anticipated the Internet: magic lantern slides, prints, posters, photographs of children who died after vaccination, warning postcards sent to new parents, envelopes with preprinted antivaccination messages and cartoons. The editor of the British Medical Journal admitted that the antivaccinators had “an extremely energetic system of distributing tracts, inflammatory postcards, grotesquely drawn envelopes, and other means of disseminating their views”—and in this asymmetrical war, the medical profession had nothing to match it. By 1907 largely working-class protesters had secured the right to opt out of vaccination, a policy that remains in force in Britain today.[16]

            In the United States, compulsory vaccination was allowed by the Supreme Court (Jacobson v. Massachusetts, 1905), and allopathic medicine pushed alternative medicine to the margins. Today’s physicians look back to the mid-twentieth century as a golden age, when they enjoyed compete public confidence, Jonas Salk was a hero, and television was populated with infallible and devilishly handsome doctors (Kildare, Ben Casey, Marcus Welby). But alternative therapies never disappeared, and the persistence of self-medication using basic home ingredients was evidenced in the stunning success of D. C. Jarvis’s Folk Medicine, number two on the Publishers Weekly nonfiction bestseller list in 1959, and number one in 1960. A Vermont physician, Jarvis repopularized a mix of raw apple cider vinegar and honey, a health tonic that can be traced back to ancient Rome.

             And then, a few years later, when everything else was called into question, alternative medicine made a remarkable comeback, reopening the door to homeopathy and various kinds of holistic and natural therapies. They surged in the 1970s and 1980s, and then the Internet offered them an invaluable tool for publicity and proselytization. Today, just 30 percent of American adults rely solely on doctors for information about medical symptoms and options; 68 percent do their own research, mainly on the Internet.[17]

            Here the seminal work was Our Bodies, Ourselves, conceived in 1970 by radical feminists who fiercely distrusted male-authored medical literature and aimed to bypass the male-dominated publishing industry. As originally imagined, Our Bodies, Ourselves was not going to be a conventional book at all, just a collection of mimeographed information packets collectively produced and shared around for discussion. Then, after adding in comments from participants, the multiple authors gave the assembled packets to a small Marxist printer, who ran them off very cheaply on newsprint and sold an astonishing 250,000 copies. The women’s collective aimed at still wider distribution, and they could only achieve that by selling out to what they were pleased to call a “capitalist pig publisher” (Simon & Schuster), which produced a conventional trade paperback and sold it for an extortionate $2.95. But what these feminists initially wanted was something very different: they envisioned a text collectively authored, edited, and continually updated by a large community of women, including its readers, which could then be broadcast freely all over the world outside the capitalist system.[18] In other words, they anticipated something like the Internet. The only difficulty was that it had not yet been invented. But once it came into existence, it became the primary medium of the vaccine resistance, which was and is mainly a women’s movement—or as they commonly describe themselves, “Warrior Moms.” They hail from all over the ideological map, from militant feminists to middle-of-the-road suburbanites to gun-toting fundamentalists. But much like the makers of Our Bodies, Ourselves, they aim to create a counterhegemonic medical discourse radically opposed to the mass media.

            Our Bodies, Ourselves had little to say about vaccines per se, but medical historian Elena Conis has noted an echo of its adversarial spirit in recent controversies over Gardasil. Efforts to mandate Gardasil for teenage girls were stopped in their tracks, even though the vaccine was generally endorsed by print media, including Ms. magazine. But the editors of Ms. were hopelessly stuck in the twentieth century. Their (metaphorical) granddaughters, fourth-wave teenage feminists, echoing the militant rhetoric of Our Bodies, Ourselves, took to their blogs and Facebook pages and denounced Gardasil as yet another dubious intervention foisted on women’s bodies by medical hierarchies. Hence, another cadre of older radicals went establishment and then was shocked to learn that their fire had been revived by a younger generation. Evidently the Internet agitators were largely successful: a 2014–15 survey of parents of adolescents found that just 21 percent supported mandatory HPV vaccination, while 32 percent thought it was simply a ploy by pharmaceutical corporations to secure a captive market.[19]

            Conis notes that Our Bodies, Ourselves was soon followed by a slew of popular literature taking a jaundiced view of conventional medicine. The “natural childrearing” movement took off with the launch of Mothering magazine (1976), where vaccination was sharply debated in letters to the editor. The wisdom of mass inoculation was seriously challenged in widely read books by philosopher Ivan Illich (Medical Nemesis, 1976) and physician Robert Mendelsohn (Confessions of a Medical Heretic, 1979). Then came the 1976 swine flu immunization fiasco and, in the 1980s, shocking revelations about tragic reactions to the DPT shot. By 1996, Money magazine was warning against “THE LETHAL DANGERS OF THE BILLION-DOLLAR VACCINE BUSINESS: With Government Approval, Drug Companies Sell Vaccines That Can Leave Your Child Brain Damaged, Can Spread Polio From Your Baby To You—And Can Even Kill.”

            All that reading matter set in motion a broad grassroots movement for what Conis calls “the democratization of vaccine knowledge.” In 1999, a congressional committee conducted public hearings on the hazards of the hepatitis B shot, during which “scientists and citizens were given equal time and attention by the assembled lawmakers. . . . [That] is just one illustration of the degree to which scientific authority had been eroded over the previous quarter century.” The amateurs had achieved parity of credibility with the professionals, something the latter no doubt found profoundly threatening.[20]

            Meanwhile, a steady rise in the incidence of autism, coinciding with a large increase (after 1986) in the number of mandated childhood vaccinations, inevitably raised the question of whether the two were connected. A great many autism parents said that their children had regressed into autism shortly after receiving shots, but most doctors dismissed these reports as coincidental and anecdotal. In November 2002 the New York Times Magazine put forward a “Not-So-Crackpot Autism Theory,” suggesting that the cause might be thimerosal, a mercury-based preservative used in several vaccines.[21] That theory was worked out at length in David Kirby’s book Evidence of Harm, which was quite favorably discussed by Polly Morrice in the April 17, 2005 New York Times Book Review, under the arresting headline “What Caused the Autism Epidemic?” Kirby and Morrice stopped short of explicitly endorsing the thimerosal hypothesis, but they clearly considered it a compelling theory worth investigating, and both suggested that parents might be better equipped to treat autism than doctors. The Centers for Disease Control had funded a study that seemed to exonerate thimerosal, but Morrice saw a possible “smoking gun” in a statistical analysis performed by SafeMinds (an autism parents group), which “contended that the government analyses of such data were flawed in a way that obscured or eliminated the original findings of statistically significant risks.” Statistics, too, do not “speak for themselves”: their meaning depends on their reception. Morrice also highlighted the example of Lyn and Tommy Redwood, who “struggled to obtain a diagnosis for their son Will, who at 17 months started to lose his language and withdraw socially. When Will turned 4, his latest ‘expert’ doctor ran out of options: ‘Why don’t you just take him fishing?’” Morrice concluded by noting that the Redwoods had taken charge of their son’s treatment, resorting to chelation (which can remove mercury from the body), and that Will had since shown remarkable improvement. “If one certain conclusion can be drawn from ‘Evidence of Harm,’” she wrote, “it’s that Will’s parents made the right decision about going fishing.”[22]

            For thirty-five years, ever since the publication of Our Bodies, Ourselves, professional medicine had taken one hit after another. Public confidence in vaccines had eroded apace. And now this. Anyone could read the story, in the newspaper of record. If this theory was correct, then autism had been caused (however inadvertently) by doctors and public health experts, who never find it easy to acknowledge iatrogenic diseases. Even more explosively, Morrice noted that UK doctor Andrew Wakefield (then little known in America) had “argued that autism was an immune-system disorder brought on by live measles virus in the MMR vaccine.” That in fact is a very common misreading of Wakefield’s notorious 1998 Lancet article, in which he and his coauthors had only suggested an autism-MMR link as a hypothesis, admittedly unproven but worth further investigation. However, the MMR contained no thimerosal, raising the possibility that the fault might not lie solely in an additive (which could easily be removed from vaccines) but also in the vaccine itself. And if that theory was correct, then the whole medical paradigm of vaccination was in jeopardy. Reception history—the responses of readers and reviewers to texts—can be profoundly relevant to earthshaking questions of epidemiology.  

            Two months after the Morrice review, on June 25, the Times sharply reversed course, a move that involved some linguistic maneuvering. The April review had been subtitled “the battle between the medical establishment and parents,” but nobody likes establishments, so the June article (on the front page) reframed the story with the headline “On Autism's Cause, It’s Parents vs. Research,” suggesting that parents did no research. This time Dr. Wakefield’s study was never mentioned (surely a case of Hamlet without the Prince). The article did cite (dismissively) a few studies supporting a connection between thimerosal and autism, but for the most part it relied on studies and assurances produced by government agencies, “prestigious” medical organizations, and “experts.” For instance, the Times reported that “Hundreds of doctors list their names on a Web site endorsing chelation to treat autism, even though experts say that no evidence supports its use with that disorder.” But that statement would have raised troubling questions of semantics in the minds of thoughtful readers. These “experts” were unnamed, so how could we verify their expertise? If hundreds of doctors reported positive results from chelation, why did they not count as experts? How do you define the term? Is “expert” a linguistic badge that journalists award to favored individuals to give them an artificial air of authority? Certainly the article never applied that label to parents, who were portrayed as emotional, irrational, submerged in “scientific illiteracy,” “desperate,” and even potentially violent. The Times reported that the CDC had called on the Federal Bureau of Investigation to protect them from autism parents, and had instructed its employees “how to respond if pies are thrown in their faces.”[23] No pies or bombs were thrown (parents of handicapped children can rarely find time to hatch assassination plots), yet public health officials did face a profound and real threat. As one of them said, “that’s really scary for us because if science doesn’t count, how do we make decisions?”

However, this official missed the mark. Parents were not rejecting science, but they were redefining scientific methods and staking a claim to being themselves scientific—and that, for the “experts,” was scarier still. “Parents vs. Research” therefore aimed to reestablish the authority of medical authorities, which had drastically eroded over the years; to assert that the words of doctors and laypeople would no longer carry equal weight, as they had in the 1999 congressional hearings on vaccination; and to affirm that “science” was the exclusive property of professionals, where parents must not trespass. But the parents radically rejected all of this exclusionary language. As one angry letter to the editor responded, “These children are the evidence, and their parents are the experts.”[24]

            The “Parents vs. Research” dichotomy was later picked up by the rest of the mass media and dominated future coverage of the autism controversy. According to this logic, there was no real scientific controversy: quite simply, one side was scientific and the other was equivalent to flat-earth partisans, and giving both sides balanced coverage would only mislead readers. But in fact the other side did and continued to do research—only now, it went underground.

            I now proceed to do what the mass media rarely permits: allow members of the Autism Underground to speak for themselves. I pay particular attention to what they have read about autism and how that reading shaped their conclusions about the condition. Of course, first and foremost, parental attitudes toward autism are molded by the hard realities of raising disabled children, but these parents also read voraciously about autism, and, as they testify, that reading greatly helps them to understand what they are dealing with. Autism is not only a medical issue: it is also, perhaps more than any other disease, a question of reader response.

            I rely on two types of evidence. There are several large-scale studies of parents and websites who argue that vaccines cause autism, and even though none of the authors are sympathetic to that point of view their surveys yield valuable information about the parents’ reading habits. I also zoom in on a small body of individual readers, a sort of focus group interviewed via e-mail: they can describe their reading experiences with the kind of detail and nuance that gets lost in larger studies. A very similar portrait of the Autism Underground emerges from both bodies of evidence.

            Let us start with the accusation made by “Parents vs. Research” and reiterated by the adversaries of vaccine skeptics: Do they ignore published scientific literature? Do they rely on anecdotes or religious dogma? A group of academics in public health and communications performed a content analysis of 480 vaccine-skeptical websites, with a view toward devising strategies to counter their influence. They found that 62.2 percent of these sites specifically said vaccines cause autism, but 64.7 percent of the total cited scientific evidence, compared to 30.0 percent that relied on anecdotes and just 6.8 percent that appealed to religion.[25] And indeed, popular websites like Age of Autism and The Thinking Mom’s Revolution frequently reproduce, discuss, and critically analyze medical journal articles.[26] Another website offers titles and abstracts of 128 scientific journal articles supporting a link between vaccines and autism; as of January 2017 it had 517,000 views.[27]

            Of course, there are also studies that find no such link. And naturally, each side in this debate cites the studies that support its position and criticizes the methodology and design of the studies backed by the other side. But two crucial points are clear. First, there is a real scientific debate here, with no consensus among experts, if you define “expert” as someone who has actually published a refereed journal article on the controversy. And second, those who argue for a vaccine-autism link do read science, and not just the science that backs their position.

            A 2013 survey by Dan Kahan of Yale University found that, while twenty-five percent of U.S. adults believed that vaccines could cause autism, there was no significant correlation between vaccine skepticism and skepticism regarding climate change or evolution, nor did scientific literacy or religiosity have any marked effect on attitudes toward vaccination. The Autism Underground profoundly distrusts the Centers for Disease Control, but it has no problem with Charles Darwin or the scientific method in general. Kahan concluded that “The ‘anti-science’ trope that links concern about vaccines to climate skepticism and to disbelief in evolution . . . does not reflect reality,” and those who promote this stereotype “are polluting the science communication environment with a toxin that enervates the faculties of reason and pluralistic respect on which enlightened democratic decisionmaking depends.”[28]

            Nevertheless, the antiscience trope became the template of mass-media coverage of the controversy. The Huffington Post stands out as a limited exception because, although it mainly promotes vaccination, it has (at least until lately) occasionally published dissenting opinions. Journalist Paul Thornton recently demanded that the site censor the latter, on the grounds that parents “might withhold valuable medical treatment at the slightest suggestion that something could go wrong,”[29] but that statement is premised on a highly dubious assumption about reader response. Are parents really so easily panicked? Yes, more of them are concerned that something could go wrong with vaccination, and more of them have cut back or delayed the shots their children receive. But is that ever a snap decision? Do parents act on “the slightest suggestion,” stampeded by one op-ed, or do they read far more than that? What is striking about my respondents—all of them—is the vast breadth of their reading on autism, which far exceeds that of most doctors.

            When her son was diagnosed at age three (around 2002), Subject 1 admitted, “I knew virtually nothing about autism and had never met a person with autism.” So she immediately embarked on a course of “voracious” reading, including “a lot of texts and manuals about educational approaches and speech development. Books and articles written by adults with autism such as Dr. Temple Grandin, while not numerous, were particularly insightful.” When she went back to the doctor’s office just three months after the diagnosis, “the pediatrician admitted that I already knew more about autism than he did.” [30]

            This is a very typical pattern among autism parents. After the initial shock of the diagnosis, they realize that their doctors can offer little in the way of treatment or even basic information. Until quite recently in history, autism was very rare.[31] Most doctors had never seen an autistic patient and hardly any had received any relevant training in medical school. Even in 2016, a British parliamentary commission found that about three-quarters of autistic persons, parents, and professionals felt that medical personnel had little or no understanding of the condition.[32] In America, the AMA Journal of Ethics found that autism parents commonly “reported poor access to a medical home, delayed referrals for evaluations, inadequate counseling about treatment options, lack of clinician knowledge regarding community supports and services, and limited confidence in their physician’s ability to provide a high level of care”—and this was not simply a matter of perception. In the same article, pediatricians admitted they felt “ill-prepared to meet the needs of their ASD patients,” and a majority of pediatric residents described their education in autism as “fair” or “poor.”[33] Parents, then, were (and often still are) largely on their own. They had no alternative but to read whatever they could find on autism, and since not much had been published, they had to generate their own body of literature and share it among themselves. Of course, they also learned a great deal from simply living with and observing autism on a daily basis, and they often wrote up and shared those experiences via blogs. They formed a community engaged in “readingwriting,” a useful term recently invented by book historians.[34] And if (as Subject 1’s pediatrician admitted) these parents knew far more about autism than medical professionals, who were the “experts”?

            Subject 1 faced a further shock when her son was five. Though he had had the standard four pertussis shots, he developed both pertussis and pneumonia. “As he slowly recovered from the dual infections,” she reports,

my son developed severe OCD, self-injurious behaviors and aggression. His bright, affectionate personality was gone along with most of his academic skills and language. Every medical professional I consulted (neurologist, allergist, psychiatrist, psychologist) insisted these new issues were “just autism,” a diagnosis that I refused to accept as he had been diagnosed with autism for two years with absolutely no hint of these behaviors.

            This experience completely shifted my perspective on autism. Because I knew the information espoused by the medical establishment was absolutely incorrect based on my direct experience, I pursued and read both medical and general media with a much more critical mindset.

This too is a common response among autism parents. Because they feel let down and misled by conventional medicine, they become insatiable and relentlessly critical readers:

            On a monthly basis, I review, skim and/or read hundreds of scientific research articles, blogposts, websites, general media articles, and parent conversations.

            I trust nothing I read 100%. I read everything knowing that the author and researchers are influenced by their personal experiences, biases, motivations, and the source of funding. Parents and professionals alike tend to be fervent advocates of whatever strategies or approaches worked for their child or patients. I search for multiple, independent sources for new theories and treatments before considering implementation for myself or my child.

            I trust nothing that is published by the government. The leaders and “experts” in government agencies have proven to have egregious conflicts of interest (e.g., the top vaccine expert earns many millions of dollars annually from vaccine patents—is this person going to fairly evaluate vaccine safety? Absolutely not, as he has clearly demonstrated.). Nearly all medical research will reflect positively on the funder or it will not be published.  

Likewise, when her youngest son began showing signs of autism around the year 2000, Subject 7

tried to learn as much as I could about it. Back then there was very little information available on the Internet so I went to the library and checked out some books on the basics, including a book by Temple Grandin. After reading all this literature I was left feeling as helpless and uneducated as before, as pretty much all they covered was what autism looked like. Over the next few years I tried to learn more, turning to websites such as Cure Autism Now and Autism Speaks and Oregon Autism Society. I also bought and checked out many, many books on the subject. What I noticed that they all had in common was that they covered the symptoms of autism very well but offered very little in terms of understanding how to manage the condition.

She later followed the websites of mainstream autism organizations, but found them “to be of very little benefit to myself and wondered how they could be of use to any even moderately intelligent person, therefore I stopped even considering them as sources of relevant information.” She concluded that the professional research carried out by Autism Speaks was “a huge waste of time and a tremendous source of frustration for families such as ours who are looking for REAL answers. Thankfully, my pursuit of knowledge finally, after fifteen or so years, led me to some actual useful information.” Eventually she “started doing Internet searches for alternative ways to treat autism. This is how I finally started learning what was really going on. I started reading about research into biochemical interventions and nutritional support. I now follow websites like Amy Yasko, N to One, Walsh Institute, and the like.” The naturopathic methods recommended by these alternative websites “worked with . . . tremendous success with both my son and grandson” (also autistic), and these approaches worked (she argued) because they were based on the premise that our “biochemistry is as unique as our fingerprints and personalities and must be approached from a completely individualized way.” According to this protocol, there is no professional “standard of care” that works for everyone. Successful treatment must be tailored to individual patients, and it depends on much observation and reading—that is, reception—on the part of patients and parents of patients.

            When Subject 5’s son was diagnosed in 2002, her immediate response was to read, voraciously and critically:

            My first questions were, “How can I help him?” and “How did this happen?” I started spending hours daily reading books and online articles. . . . Reading gave me hope for my son, but the sheer volume of material also frequently brought confusion, skepticism and frustration.

            Everything I read about autism was—and is—critically analyzed to identify inaccuracies, incorrect conclusions, time-wasting shams, scams and hidden agendas. I began noticing that information from seemingly reliable hospital and university websites sounded written either by someone steeped in outdated science, unfamiliar with autism, or seeking customers. Where was the emerging research, the innovation, the intellectual rigor this topic demanded?

Subject 5’s experience with physicians was still more discouraging. She took her son to a pediatric neurologist, “but I was shocked by the doctor’s inadequate performance. All he would offer was psychotropic medications, plus a seizure medicine with unpleasant side effects that my subsequent reading indicated was likely inappropriate. . . . My profound disillusionment became the catalyst transforming me from passively trusting ‘the experts’ to actively investigating the health care protocols doctors prescribed for my son and myself. To later learn that iatrogenic error is the United States’ #3 cause of death was sadly validating.” There she alludes to two medical journal articles: the first, published in JAMA in 2000, estimated 225,000 iatrogenic deaths annually in the United States, and a follow-up in the BMJ in 2016 revised that figure upward to 250,000.[35] That suggested that, over the past 16 years—the years in which the Autism Underground mobilized—nothing effective had been done to ensure that medical professionals killed fewer patients.

            Like many other autism parents, Subject 5 turned to listservs where information on biomedical treatments was shared. That led her to try a program of nutritional supplements, which (she reports) “drastically improved” her son’s condition. She also found that many of the most helpful posters on these listservs were not exactly amateurs, and were adept at close reading. They had “scientific backgrounds—in medicine, clinical research, statistical analysis, toxicology and related fields. These parents were posting copies of peer-reviewed published studies, the gold standard of research credibility . . . and to my surprise, they were pointing out serious errors they’d found in those studies.” Subject 5 pointed as well to a much-circulated statement by medical editor Marcia Angell, who in 2009 concluded that medical research had been so corrupted by ties to pharmaceutical companies that “It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of The New England Journal of Medicine.” Angell’s statement, published in the New York Review of Books, immediately reached many of the nation’s most serious lay readers.[36]

            Some autism activists cite Thomas Kuhn’s The Structure of Scientific Revolutions, the first book assigned to every graduate student in the history of science. When doctors assert that the scientific consensus confirms the safety and effectiveness of vaccines, the activists (following Kuhn's model) accordingly argue that consensus scientists stick to familiar paradigms long after new research calls them into question. In this sense, the Autism Underground represents what Kuhn called a “paradigm shift.”[37] Making essentially the same point, Subject 5 quotes Leo Tolstoy: “I know that most men, including those at ease with the problems of the greatest complexity, can seldom accept even the simplest and most obvious truth if it be such as would oblige them to admit the falsity of conclusions which they have delighted in explaining to colleagues, which they have proudly taught to others, and which they have woven, thread by thread, into the fabric of their lives.”

            The prime target of vaccination campaigners is familiar to everyone. Jenny McCarthy described her son’s descent into autism and her own efforts to cure him in her 2007 book Louder Than Words, which shot to No. 3 on the New York Times bestseller list. Soon she was debating doctors on television, as if she were their equal. She never completely rejected vaccines, but she did insist that they had caused the autism epidemic and that they should be made safer. Though she was a relative latecomer to the Autism Underground, the mass media often blamed her for starting the antivaccination movement (seemingly all by herself). Not only was she accused of persuading countless parents to stop vaccinating; she was held up as evidence of the shallowness and irresponsibility of her readers. When faced with a life-and-death decision concerning their children’s health, the critics charged, these parents blindly followed the advice of a celebrity—and a Playboy centerfold at that. Even Doonesbury was appalled.

            But comic strip artists often have a limited understanding of the methodological issues involved in reader response. Bestseller lists and sales figures tell us which books are popular, but they cannot tell us why they are popular or what readers admire in the texts or the authors. Do books with a message “convert” readers, or do readers buy books that reflect what they already believe? My focus group suggests that autism moms did not become vaccine skeptics because they read Jenny McCarthy; rather, they read Jenny McCarthy because they were already dubious about vaccines. Her celebrity was irrelevant.

            Subject 2 “loved” Jenny McCarthy’s Louder Than Words and Mother Warriors, mainly because “I really appreciated her telling her story and other families’ stories.” However, “These books did not ‘convert’ me; they confirmed and built upon what was already familiar.”

One of the most ridiculous assertions often repeated in mainstream news is that all concerns about vaccines (especially about an autism-vaccine link) arise from Jenny McCarthy and Dr. Andrew Wakefield. They responded to these concerns; they did not create them. And thousands of parents around the world are raising these concerns because of their own experiences. . . . Lots of people were already speaking out about vaccine induced autism at that time—parents and alternative practitioners—but were being totally ignored by mass media. Jenny was able to get on TV though, because she had connections and some fame and celebrity status as an actress, model, comedienne, and author of books about motherhood.

            But then the media/mainstream medicine/govt/etc. turns this around to say over and over again that the reason Jenny influenced people was because of her celebrity status. No autism mom ever said, “Jenny must be right about vaccines causing autism because she's a Playboy model!” If there weren’t thousands of people who already experienced and believed in vaccine injury, her words would have come and gone without much notice. Her celebrity status got her on TV, but it is not what inspired people to believe what she was saying. Jenny McCarthy and Andrew Wakefield are both brave talented people who spoke out on these issues, but they do not have supernatural powers of hypnosis.

Readers found Jenny McCarthy credible not because she was a celebrity, but for precisely the opposite reason: because she was, in every other respect, a typical autism mom grappling with the same medical issues that they were struggling with. Subject 2 was clearly responsive to mother-authored books as a genre. Her son suffered from chronic enuresis and diarrhea, conditions that commonly accompany autism. “We had been to various doctors and two nutritionists but they just shrugged.” Then, at a booth at an autism conference, she came across the book Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research & Recovery by Karyn Seroussi. That piqued her interest primarily because it was a “personal story told by a mother. So I bought it. When I got home I realized the book was about dietary intervention. ‘I’m not interested in that,’ I thought. But I read it anyways because I wanted to hear a mother’s story. It turned out to be a great book. That was the first time I became aware of the biomedical paradigm of autism.” She also read Enzymes for Autism and Other Neurological Conditions by Karen De Felice, also an autism mother, and the dietary interventions recommended by these two volumes (she reports) dramatically reduced her son’s incontinence. “Thanks to these two mom authors . . . our son became toilet trained and we no longer had to change diapers. No thanks to the professionals.” At the same time, Subject 2 certainly did not ignore mainstream scientific literature; she supplied me with a lengthy bibliography of what she judged to be solid research into the causes of autism, including articles from Nature, Annals of Neurology, Progress in Health Sciences, Biochimica et Biophysica Acta, Proceedings of the National Academy of Sciences, Molecular Psychiatry, Acta Neurobiologiae Experimentalis, Journal of Child Neurology, and (published as early as 1976) Klinische Pädiatrie.

            Subject 5 said that “A preponderance of evidence persuaded me to believe the vaccine/autism causal link long before Jenny McCarthy arrived on the media scene.” She did read Louder Than Words and was deeply affected by its account of McCarthy’s son Evan and his near-death experience following the MMR. But at the same time Subject 5 worried: “I knew how her image would be used against her, and could by extension sabotage the scientific credibility my network of parents worked toward.”

            Subject 7 never read Jenny McCarthy’s books but agrees with her “absolutely” about vaccines. She reached that conclusion first because she observed her son and grandson regressing into autism shortly after each received a battery of four shots, and second because she read about “tens of thousands of families who all share a common story. This cannot be coincidental. . . . These opinions have been formed based on hundreds of hours of sifting through endless, useless information on the Internet and books regarding autism and its causes. The books that address the biochemical nature of autism make sense to me from a scientific and logical perspective and have actually yielded real results for my son and grandson.”

            Subject 6 reports that her son was injured by vaccines in 1986–87 and descended into autism. She had both a B.S. and master’s degree in biology and had read quite a lot about vaccines in her own textbooks and (a generation later) the textbooks her daughter was assigned when she was studying nursing. For decades Subject 6 regularly visited scientific libraries (“my favorite place in the world”) to keep up with journals on immunology and neurology. She was certainly influenced by Silent Spring, another book that challenged prevailing scientific orthodoxy. But as for Jenny McCarthy, she “came on the scene long after I had reached the decision about vaccines.  I just thought poor thing—I wished I could have saved her the pain.”

            Subject 1 was Ms. McCarthy’s most fervent admirer in the group. “Jenny’s books are the very first books I read, when my daughter was first diagnosed . . . so I guess, that is why I mentioned them and I still have them.” Yet she was the one interviewee who did not believe that vaccines had triggered her child’s autism, though she granted that other cases might be different. What she found inspirational in Ms. McCarthy’s stories was her struggles to learn about autism and her battles for her son’s recovery. “She is actually the reason I am the ‘Mother Warrior’ I am today. . . . I love Jenny. . . . [H]er books made me laugh and cry!!!!” As for the vaccine controversy, “Jenny was speaking on her own personal experience and did not force anyone to think and feel the same way. . . . As an adult, you have to take responsibility for yourself and your own actions and do what is right for your child or loved one.”

            Granted, I work with a sample of only six interviewees—but Thornton’s sample size is zero. He produces no actual parents who make radically unconventional decisions regarding their children’s health “at the slightest suggestion.” What my focus group reports is supported by a very large and representative sample of 1,552 parents. That survey found that, for sources of vaccine safety information, just 2 percent of parents invested “a lot” of trust in celebrities and 24 percent “some” trust, but the proportions rose to 8 and 65 percent when asked if they trusted parents who reported vaccine injuries in their own children, as Jenny McCarthy did.[38]

            Every poll taken in recent years shows public confidence in the mass media descending to new lows. A “hermeneutic of suspicion,” which started among a few academic literary theorists, has been picked up by common readers everywhere. In that respect, the Autism Underground is entirely within the mainstream of grassroots public sentiment. Subject 2’s distrust of professional journalists is typical: “I’m extremely disappointed in the general news media coverage of vaccines and autism. My favorite news sources write about these topics with such ignorance, just repeating spin,” specifically the Los Angeles Times, the New York Times, NPR, Slate, and Daily Kos. She relied much more on alternative websites run by autism parents as well as Evidence of Harm (“a great book”).

            Subject 5 has a B.A. in communications and worked for twenty-one years in publishing. “Publishing and college taught me how news articles get researched and written, how public relations messaging is crafted, and how advertising is conceived and executed. I learned to recognize confluences of fact and opinion designed to influence readers, rather than just inform. As computers changed communications delivery, speed, and content, the increase in media biases was a shock to my pre-autism naïvete about journalistic ethics of fairness and objectivity.” This sensitivity to spin pervades the autism community. Readers often learn to distrust media when they read stories about events that they personally participated in, and see the divergence from what they themselves witnessed. For Subject 5 this epiphany came with the 2005 New York Times “Parents vs. Research” story. She met Gardiner Harris, one of the reporters who filed that article, at the Minnesota State Capitol, when the legislature was considering a bill to limit thimerosal in vaccines. “Harris misidentified one of the two women in his opening anecdote,” she recalled. “He described an autistic child’s nutritional supplements as ‘dangerous,’ though they had been prescribed by the Mayo Clinic for the child’s mitochondrial disorder—facts he did not disclose. Three times Harris asked me, ‘How do you feel?’ rather than, ‘What scientific studies led you to believe thimerosal is harmful to infants?’” She concluded that Harris, eager to pin the “antiscience” label on autism parents, had not asked them about their scientific reading because their answers would have spoiled his preconceived narrative. When an Associated Press reporter interviewed three Oregon vaccine skeptics—all educated professional women—she was surprised to discover that they had done “years of research into how vaccines can affect people’s health . . . spending hundreds of hours reviewing medical studies.”[39]

            Direct-to-consumer drug advertising, legalized in the United States in 1985, has increased the sales of some individual drugs, but at the price of credibility. Some years ago World Health Organization ethicist Alexander Capron and Roche CEO William Burns both warned that drug advertising had undermined public confidence in the pharmaceutical industry as a whole, creating the impression that drugs were being marketed like cat food with the sole objective of maximizing profit.[40] As other forms of income dried up, drug advertising became the sole economic bright spot for traditional media. After all, the target demographic was the elderly, who still read paper-and-ink newspapers and watched network news. But skeptics charged that the media was reluctant to reveal problems with drugs and vaccines because they had become so dependent on pharma ads. Consequently, when journalists wrote (repetitively) that Andrew Wakefield had been stripped of his license to practice medicine (true) and that his research had been “debunked” (highly debatable), the Autism Underground discounted those reports. For them, Dr. Wakefield—much like Dr. Stockmann in Henrik Ibsen’s An Enemy of the People—was a whistleblower who had been framed and ostracized for identifying an environmental hazard.

            Vaccine proponents usually avoid, discourage, or suppress public debate about vaccination, and for an understandable reason: by one crucially important and objective measure, they lose such debates. Erika Franklin Fowler and Sarah Gollust found that reporting vaccination controversies in the media “is associated with decreases in support for HPV vaccine requirements, state immunization programs, and confidence in doctors and in government.” Their solution is to advise journalists to stop reporting vaccination as controversial, even if it is.[41] One difficulty with this proposal is that it violates the core principles of a democratic society. It treats readers not as rational citizens capable of choosing intelligently between alternative points of view, but as sheep who are easily misled and must be protected from dangerous ideas. If the media never report concerns about product safety, unsafe products will never be fixed or withdrawn. And of course, without free and open debate, “science” loses the ability to correct its own errors and ceases to be science at all.

            For some reason, vaccination proponents like Fowler and Gollust seem to embrace the “hypodermic needle theory” of reception: that is, they assume that authors unproblematically inject ideas into the minds of passive readers, with predictable and consistent results. As long ago as the 1930s, communications specialists (Paul Lazarsfeld, Herta Herzog, Hadley Cantril) began to realize that this was a highly simplistic model, which did not account for the fact that readers think.[42] But even today many doctors, public health officials, and academics believe this approach will work with patients: first quarantine them (as far as possible) from vaccine skepticism, then give them a shot of “facts” about vaccination. Brendan Nyhan and his coresearchers exposed 1,759 parents to provaccination literature and then tested their responses. They were surprised to find that the result was often an adverse reaction: parents who were already doubtful about vaccination only stiffened their resistance.[43] Nyhan found that difficult to explain, but his experiment failed to account for the likelihood that many of the skeptical parents had already read a great deal about vaccination. Reader response to a given text always depends on what the reader has previously read. If Nyhan’s readers concluded that his recitation of “facts” talked down to them, contained errors, was one-sided, attacked straw men, failed to anticipate obvious counterarguments, or avoided engaging them in a real dialogue, then they would naturally recoil.

            Far from restoring public confidence in vaccination, the kind of censorship Paul Thornton favors probably has the opposite result. Historians of reading can point to countless examples of the “Banned in Boston Effect,” where the very act of censorship publicizes and greatly expands the audience for the work that has been censored. When the Huffington Post pulled an article that treated a link between vaccines and autism as an open question, vaccine skeptics preserved and disseminated the article on the Internet and treated the episode as yet more evidence of a larger cover-up.[44]

            All of these strategies for squelching the vaccine debate have only driven it underground, where the skeptics actually enjoy a home-court advantage. As one autism activist explains this reader response dynamic, it usually begins when she posts online a comment critical of vaccines. Inevitably provaccination commentators respond fiercely, but “those quietly witnessing the conversation later seek me out offline. Not wanting to chime in directly, they ask questions behind the scenes and appreciate my perspective as the parent of a vaccine-injured child and ask for advice.” Her advice is: “Read. Read. Read. Read. Read. And then read some more. Knowledge truly is power, and applying that knowledge can be very powerful.” Specifically, “with the Internet teeming with reliable, scientifically based data, all one has to do is point out where the studies are. . . . You’ll see plenty of links to copy, paste, print and share.” The provaccine side would no doubt answer that they can refute these studies with their own studies. And maybe they could, if this were an open and public debate—but it is not, because they drove the debate out of the mainstream public arena. It has become a private conversation between a vaccine skeptic and an undecided parent, invisible to everyone else, with no vaccine proponents participating. Thus, converts are made, one by one, beneath the radar.[45]

            Even a generation ago, few laypeople had ready access to a medical library, and fewer would have known how to find anything in it. Today the PubMed database offers everyone easy searchable access to the universe of medical journals. It is a favorite tool of the Autism Underground but also of other patients searching for answers to a host of diseases, from AIDS to breast cancer. Of course, no layperson can have the breadth of medical training and experience that physicians have, but that’s precisely the point. Medical students must gain some mastery of the whole field of medicine, and once they become busy working doctors they cannot keep up with the torrent of medical literature. A lay reader can focus exclusively on researching one particular condition, and if it is autism, she will soon become far better read than the average pediatrician. Again, who is the “expert”?

            This article offers no medical advice. It does not evaluate, recommend, or warn against any medical interventions, including vaccination. And of course, a reception history cannot tell us whether vaccines cause autism. It can tell us what autism parents are reading and how they are reading it, and it confirms that much of that reading is published in respected scientific journals. And the methods outlined here could readily be adapted to reconstruct the literary cultures of other marginalized groups, such as AIDS patients or the deaf community.[46]

            The Autism Underground is rooted in a very long tradition of amateur medicine, the latest manifestation of one of the oldest and most popular genres of American literature. Like the early Protestants, Victorian atheists, First World War pacifists, and 1950s beatniks, its members pride themselves on their nonconformity and independence of mind in the face of much official opprobrium. For any other party of dissenters, it is well worth studying as a model for organization, proselytization, and gaining public acceptance. As I put the final touches on this article, it is becoming apparent that the Autism Underground will now be welcome in the White House. The professional medical community, having exhausted every other alternative, will have to deal with it.

The author has occasionally contributed to the web newspaper Age of Autism. His wife, Gayle DeLong, served a term on the board of SafeMinds. On behalf of their daughter they filed a claim under the US National Vaccine Injury Compensation Program. The claim was dismissed on grounds of untimely filing.

Notes

[1] Economist YouGov poll, December 17–20, 2016, 54. https://d25d2506sfb94s.cloudfront.net/cumulus_uploads/document/ljv2ohxmzj/econTabReport.pdf, accessed February 16, 2017.

[2] Allison Kennedy et al., “Confidence about Vaccines in the United States: Understanding Parents’ Perceptions.” Health Aff (Millwood) 30, no. 6 (2011):1151–59.

[3] “Parent Views on Medical Research: Safety of Vaccines & Medicines Top Priorities,” C. S. Mott Children’s Hospital National Poll on Children’s Health 11 (October 11, 2010).

[4] Douglas J. Opel et al., “The Architecture of Provider-Parent Vaccine Discussions at Health Supervision Visits,” Pediatrics 132 (2013):1037–46.

[5] Meghan Moran et al., “Why Are Anti-Vaccine Messages So Persuasive? A Content Analysis of Anti-Vaccine Websites to Inform the Development of Vaccine Promotion Strategies,” paper presented to the American Public Health Association, November 3, 2015.

[6] Robert Darnton, The Literary Underground of the Old Regime (Cambridge, MA: Harvard University Press, 1982).

[7] Phoebe Day Danziger and Rebekah Diamond, “The Vaccination Double Standard,” Slate, July 25, 2016.

[8] Roy Porter, Introduction, in The Popularization of Medicine 1650–1850, edited by Roy Porter (London: Routledge, 1992), introduction.

[9] Andrew Wear, “The Popularization of Medicine in Early Modern England,” in Porter, Popularization, 17–41.

[10] Philip K. Wilson, “Acquiring Surgical Know-How: Occupational and Lay Instruction in Early Eighteenth-Century London,” in Porter, Popularization, 42–71.

[11] Roy Porter, “Spreading Medical Enlightenment: The Popularization of Medicine in Georgian England, and Its Paradoxes,” in Porter, Popularization, 215–31.

[12] Marie-Claude Felton, “The Case of Self-Publishing Science Amateurs and their Quest for Authority in 18th-Century Paris,” Mémoires du livre/Studies in Book Culture 6 (Fall 2014); Margaret Carlyle, “From Practice to Print: Women Crafting Authority at the Margins of Orthodox Medicine,” Mémoires du livre/Studies in Book Culture 6 (Fall 2014).

[13] Norman Gevitz, “’But All Those Authors are Foreigners’: American Literary Nationalism and Domestic Medical Guides,” in Porter, Popularization, 232–51.

[14] Kevin J. Hayes, A Colonial Woman’s Bookshelf (Knoxville: University of Tennessee Press, 1996), 88–100.

[15] Thomas A. Horrocks, Popular Print and Popular Medicine: Almanacs and Health Advice in Early America (Amherst: University of Massachusetts Press, 2008).

[16] Nadja Durbach, Bodily Matters: The Anti-Vaccination Movement in England, 1853–1907 (Durham, NC: Duke University Press, 2005), 27–31, 46–50.

[17] Pew Research Center, “Vast Majority of Americans Say Benefits of Childhood Vaccines Outweigh Risks,” February 2, 2017, http://www.pewinternet.org/2017/02/02/vast-majority-of-americans-say-benefits-of-childhood-vaccines-outweigh-risks/, accessed February 16, 2017.

[18] Jennifer Gilley, “’How to Get the People’s Books to the People’: Political Philosophy and the Publication History of Our Bodies, Ourselves,” unpublished paper.

[19] William A. Calo et al., “Parents’ Support for School-Entry Requirements for Human Papillomavirus Vaccination: A National Study,” Cancer Epidemiology: Biomarkers and Prevention 25 (2016), no. 9: 1–9.

[20] Elena Conis, Vaccine Nation: America’s Changing Relationship with Immunization (Chicago: University of Chicago Press, 2015), 113–29, 119–200, 203, 240–42.

[21] Arthur Allen, “The Not-So-Crackpot Autism Theory,” New York Times Magazine, November 10, 2002).

[22] Polly Morrick, “What Caused the Autism Epidemic?” New York Times Book Review, April 17, 2005, F20.

[23] Gardiner Harris and Anahad O’Connor, “On Autism’s Cause, Its Parents vs. Research,” New York Times, June 25, 2005, A1.

[24] Belinda Aggarwal, letter to the editor, New York Times, July 1, 2005, A16.

[25] Moran et al., “Why Are Anti-Vaccine Messages So Persuasive?”

[26] For instance, the five-part series “Vaccines Cause Autism” in Thinking Mom’s Revolution, September 6, 15, 16, 28, 2016, and October 14, 2016).

[27] https://www.scribd.com/doc/220807175/128-Research-Papers-Supporting-the-Vaccine-Autism-Link.

[28] Dan M. Kahan, Vaccine Risk Perceptions and Ad Hoc Risk Communication: An Empirical Assessment, CCP Risk Perception Studies, Report No. 17 (2014): 18–21, 25, 46, 49.

[29] Paul Thornton, “Arianna Huffington Wants to Sell Health Advice and Products. Science Help Us,” Los Angeles Times, August 11, 2016.

[30] I placed a notice in Age of Autism, a web newsletter that argues for a vaccine-autism link, soliciting interviewees for this project. The subjects had to be responsible adults and members of autism families. Seven volunteers responded, and one dropped out before the interviews could begin. The remaining six (all female) were interviewed by email on condition of anonymity, and all quotations of these subjects are taken from these interviews. This research has been IRB approved.

[31] Jonathan Rose, “Yes, There Is an Autism Epidemic,” History News Network, March 6, 2016; Dan Olmsted and Mark Blaxill, Denial: How Refusing to Face the Facts about Our Autism Epidemic Hurts Children, Families—and Our Future (New York: Skyhorse, forthcoming).

[32] “Call for More Autism Training for NHS Staff,” Guardian, July 3, 2016.

[33] Nili E. Major, “Autism Education in Residency Training Programs,” AMA Journal of Ethics, 17, no. 44 (2015): 318–22.

[34] See the call for proposals for the 2017 conference of the Society for the History of Authorship, Reading and Publishing, http://www.sharp2017.com/cfp/, accessed February 16, 2017.

[35] Barbara Starfield, “Is US Health Really the Best in the World?” JAMA 284 (2000): 483–85. Martin Makary and Michael Daniel, “Medical Error—The Third Leading Cause of Death in the US, BMJ 2016;353:i2139.

[36] Marcia Angell, “Drug Companies & Doctors: A Story of Corruption,” New York Review of Books, January 15, 2009.

[37] For instance, Zoey O’Toole, “Anti-Science?” Pathways to Family Wellness (2015): 20–23.

[38] Gary L. Freed et al., “Sources and Perceived Credibility of Vaccine-Safety Information for Parents,” Pediatrics 127 (2011): S107–12.

[39] Gosia Wozniacka, “Anti-Vaccine Mothers Discuss Their Thinking Amid Backlash,” Minneapolis Star-Tribune, February 22, 2015.

[40] “Direct-to-Consumer Advertising under Fire,” Bulletin of the World Health Organization 87 (2009).

[41] Erika Franklin Fowler and Sarah E. Gollust, “The Content and Effect of Politicized Health Controversies,” Annals of the American Academy of Political and Social Science 658, no. 1 (2015): 155–71.

[42] See for instance Paul Lazarsfeld, Bernard Berelson, and Hazel Gaudet, The People's Choice: How the Voter Makes Up His Mind in a Presidential Campaign (New York: Columbia University Press, 1948).

[43] Brendan Nyhan et al., “Effective Messages in Vaccine Promotion: A Randomized Trial,” Pediatrics, 133 (2014): e835–42.

[44] https://sharylattkisson.com/is-huffpo-under-big-pharmas-tent-lance-simmens/, accessed February 16, 2017.

[45] Cathy Jameson, “Things to Know or Do When You’re Up Against a Vaccine Bully,” Age of Autism (October 20, 2013).

[46] See for instance Ann Porter and Sisira Edirippulige, “Parents of Deaf Children Seeking Hearing Loss-Related Information on the Internet: the Australian Experience,” Journal of Deaf Studies and Deaf Education, 12, no. 4 (2007): 518–29.

Comments

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Zoey O'Toole

@reader asks "Is that disclaimer really necessary?" of the line,

"and even though none of the authors are sympathetic to that point of view"


Yes, reader, the "disclaimer" IS necessary. When assessing written material, whether it's data or opinion, it is important to consider any bias that might be inherent. If the bias of an article is AGAINST the particular finding you are discussing, that lends the finding MORE credence. If the bias is toward the finding, the finding has a greater likelihood of exaggeration. Any meta-analysis on the Cochrane website would make that clear for you very quickly.

The fact that such a notation of bias is a "deal breaker" for you indicates that you are "breaking deals" with no justification.

Zoey O'Toole

Thank you, Professor Rose, for this wonderful compilation of the history of underground publication and dissemination of medical information that allows us "presumptuous women" to take charge of our children's health. Proud, honored, and humbled to be a part of the Autism Literary Underground.

David Weiner

Jonathan, I understand and agree with your point that the autism moms are very scientific.

"enlightened democratic decision-making" sounds like a good thing, but I have not seen much democratic decision-making in my lifetime that I would characterize as "enlightened". This sounds like a lot of Progressive wishful thinking to me.

"Kahan's point is that there is no correlation between vaccine skepticism and climate skepticism", but this is completely irrelevant. Each position stands on its own merit (or not). It sounds to me like Kahan is trying to assure his Progressive colleagues that we vaccine dissidents are not the neanderthals they believe the climate skeptics are and his statements are patronizing and insulting.

Jonathan Rose

Thanks David Weiner, but to be fair to Kahan, he clearly rejects the notion that there is such a thing as "settled science" which is beyond debate. He favors "enlightened democratic decisionmaking" in all scientific matters, a clear rejection of any kind of dictatorship of "experts". Yes, some vaccine skeptics are climate skeptics, but so are some vaccine proponents. Kahan's point is that there is no correlation between vaccine skepticism and climate skepticism, and therefore vaccine skeptics cannot be dismissed as blindly "anti-science". And my point is that autism moms, far from being anti-science, are often better scientists than the scientists.

David Weiner

I liked this paper a great deal, except for the quotes from Kahan's research, reproduced here,

"The Autism Underground profoundly distrusts the Centers for Disease Control, but it has no problem with Charles Darwin or the scientific method in general. Kahan concluded that “The ‘anti-science’ trope that links concern about vaccines to climate skepticism and to disbelief in evolution . . . does not reflect reality,” and those who promote this stereotype “are polluting the science communication environment with a toxin that enervates the faculties of reason and pluralistic respect on which enlightened democratic decisionmaking depends"

I see 2 problems with these statements:

1) There ARE highly intelligent and well-informed people who are "climate skeptics" and/or find the Darwinian theory of evolution unsatisfactory in certain respects. Undoubtedly there are vaccine dissidents who hold some of these views. Why throw them under the bus in order to try to demonstrate to others that we are not scientific ignoramuses?

2) By implying that the above 2 positions constitute a valid orthodoxy and represent "settled science", this only strengthens the case that there COULD or SHOULD be a valid orthodoxy on the topic of vaccines and autism. Clearly, this whole line of reasoning undermines our position that this topic needs to be open for discussion and debate, that dissident views should be allowed and respected.

Beth

Brilliant! Thank you!

david m burd

According to establishment medical authorities, here in the U.S., now 50% of America's children are afflicted with serious & chronic health disabilities, the autism spectrum being a relatively small part.

Johnathan Rose is right that any motivated non-medical specialist can find a vast number of published medical papers available via the internet: There are thousands (when counting other countries' papers) that clearly cite the disabling and lethal effects of vaccines' constituents to human cells and neurological systems. These Papers are completely ignored by our Government Leaders and the Mainstream sold-out Media who kneel to their Vaccine God.

As this too-polite discussion and dissent goes on, EVERY DAY 5,480* American babies and toddlers are being permanently damaged, by vaccines. *4 million born every year x 50% divided by 365 days.
5,480 EVERY DAY.

Every day, year after year the carnage ever mounts.

Barry

My aim here is to understand why so many of us have arrived at the conclusion (or at least suspicion) that there is a vaccine-autism link.

**********

What's there to understand, about thousands of parents telling the exact same story? Of having brought their healthy child to see a doctor for 'routine' vaccines, and then walking away with a child that has suddenly become disabled?

It might be a god awful truth to accept . But it is definitely not a hard concept to understand.

Twyla

Thank you so much, Prof. Rose, for writing this brilliant interesting article which makes such good points, and thank you so much Age of Autism for posting it!!

reader

"I rely on two types of evidence. There are several large-scale studies of parents and websites who argue that vaccines cause autism,

and even though none of the authors are sympathetic to that point of view

their surveys yield valuable information about the parents’ reading habits."

Is that disclaimer really necessary? It's a deal breaker for me.

Denise Anderstrom Douglass

Thank you Mr. Rose. I read the entire thing (being a good example of the self educating tradition you describe) and I want to praise you for it. You are right on. My connection to Penn State goes back to 1967. My husband had both a Masters and a PhD from Penn State. Well, there are no chairs of Rhetoric anymore, but I know from my reading in libraries all over the country before the internet started that what you claim about the history of medicine and self study by reading is true. Bless you, bless Jenny McCarthy, bless Andrew Wakefield, and bless Andrew Douglass, my second son, a warrior single parent -- and bless you, too.

Jeannette Bishop

Thank you! Happy to see more thought provoking insights from the author in publication.

susan welch

Jonathan. Thank you so much for this comprehensive and fascinating article. I read every word and did not 'skim' at all (as I am guilty of with some lengthy articles).

You nailed it!

Shelley Tzorfas

When you are forced to stick out your child's arm, leg and butt to have them get SHOT with deadly Aluminum, Mercury, cancer promoting Formaldehyde, Soylent Green -like aborted human Fetal Cells, animal & insect cells, dangerous Peanut oils leading to anaphylaxis, in order to keep the right to an education-then your children become Nothing more than Chattel and a piece of Property.... Science without conscience

David Weiner

I applaud Jonathan Rose for this excellent article. Clearly, today's vaccine dissidents are part of a long history of lay people (and professionals) who have done their homework. This website is a powerful testimony to such individuals. Also noted is the problem with medical elitism has been going on for centuries, in various realms of medical practice.

Rose described today's dissidents as falling into 1 of 2 groups: those who consider themselves to be "anti-vaccinationists" and those who advocate for fewer and safer vaccines.

While I believe that this categorizations does describe the majority of such individuals, he unfortunately left out an important 3rd group: those who have come to recognize the intrinsic danger of relying upon governments to establish appropriate medical guidance, with respect to vaccines or otherwise. These critics understand that it is inadequate to simply promote vaccine choice.

To our way of thinking, as soon as governments start to create vaccine schedules and promote vaccination, it is already game over. Mandates will be just around the corner. And viable exemptions to such mandates are a poor safeguard. When the medical monopoly and the bought media are united in their stand, it is practically inevitable that most parents will not take advantage of exemptions, if they even know about them. And, of course, they can be taken away at any time.

Hopefully, in this next chapter of the history of the Autism Underground, more and more parents and other citizens will come to realize that in order to end the plague of vaccine injury and death, the entire government vaccine program must be abolished. That we need a separation of vaccines and state.

Yes, I know that some people may find this type of position to be "extreme" and may make others uncomfortable. But we cannot solve this problem with half-measures. We must tell the truth and do what must be done to redeem ourselves.

Laura Hayes

Wow, what a fascinating article!

Thrilled to be part of The Autism Underground! We ARE having an impact...we ARE saving lives everyday...and that is WAY more than vaccinating pediatricians can say, as they destroy and prematurely end the lives of their patients each and every day, syringe by syringe.

Thank you, Jonathan!

cia parker

Fascinating. I'm going to order Darnton's book right now. This article is a great work of synthesis!

Cathy Jameson

This piece is brilliant! It's one of the best articles I've ever read. Thank you, Jonathan, for the time and work you put into it. I'll be sharing it wherever I can.

Kathy Sincere

Jonathan,

Thank you for this absolutely beyond-words brilliant article. What a history of mankind being manipulated by the “medical” community and the populace reaction to lies, coercion and suppression. We (the autism community) and like-minded progressive thinking people will continue this legacy of protest.

My oldest son was at the beginning of this giant wave of autism, born in 1973 (much like Dr. Rimland’s son); he was not diagnosed until 1994 when he was 21. Since he was high functioning (in some regards) aspergers, I had received many diagnoses/opinions from medical doctors. Absent-minded professor was the most comical. The one that was the least comical came in 1978: it was all my fault. The psychiatrist who finally diagnosed him in '94 had previously practiced as a pediatrician. A very bright and compassionate young woman. After two visits she pronounced him with pervasive development disorder which was the only terminology they used at the time. When I read a few books on this subject I felt both relieved that there WAS a name for this and also extreme anger at the medical community for their lack of interest or caring. And so I returned to school to study holistic nutrition to help not only my ASD son but also his three siblings that by then were also vaccine damaged.

It was apparent how ignorant the medical community still was in 2004 when I took my ASD son to one of the best psychiatrists in Denver. This wonderful man, who I really admired, openly admitted to me that he knew very little to nothing about autism spectrum disorder. He asked ME for information, which I provided to him. This nationally-recognized doctor had been the head of a psychiatric department at Denver Health (huge medical center) and also was a professor at CU medical school.

I will share your article far and wide! It is so important for all of us to understand where we, collectively speaking, have been with the issues of medical freedom/self help/activism and where we are headed.

God bless your work!

Kathy Sincere Colorado Coalition for Vaccine Choice www.ccfvc.org

Gary Ogden

Jonathan: Outstanding. Thank you. What the authorities will not and cannot contemplate is that most people do actually think, and rightly tend to trust personal experience. We can't help it. Born curious, we humans.

Morag

Fab and fascinating article . Seumas Beaton the Mull ollamh [Professor] got called to see a very sick Maclean at Aros Castle . The two City Doctors from The Royal Collages were at a loss what to do and left the room. Beaton swiftly diagnosed the problem, the only cure would be a sudden violent exertion of the patients lungs ,but Maclean was so ill and weak. Maclean was amazed and horrified as Beaton lowered his breeches and did a quick woopsie onto the fireside shovel and proceded to roast it until dry and powdered over the open fire . The prescription was then left wrapped in paper but left half open on the bedside table .with instructions to Maclean to" say nothing, do nothing" The two pompus and arrogant Edinburgh experts wanted to know what Beaton had done as he was considered a Quack and a Country Leech ,but Maclean could only point weakly at the parcel of brown powder and said nothing . The two Doctors poked and smelled the powder but could make nothing of it . They both took good sized samples sniffed again then ingested the coutry Professors prescription . It was too much for Maclean who laughed with a force he did not think was left in him . It worked a treat the ulcer burst and Maclean vomited up the foul ulcer material and was set for a cure . Slante ma ha to your yery good health . [ child vomited 2 pm Mother coming up later ]

Donna L.

Wow! What an utterly brilliant bird's eye view of how we all got here and of where we all fit within the scope of medical history. May your article travel far and wide, Jonathan. So incredibly well done!

John Stone

Jonathan,

It is very important to say these things. People with academic training should not be deceived: we are not dealing with the triumph of superior knowledge, we are dealing with the triumph of fallible and often malevolent institutions. They should look to history, how people are manipulated, become locked into delusory ideologies, how civilisations rise and fall. They should consider that if it is becoming impossible to discuss certain issues in an open public forum the only real question is "Why?" If someone has a superior argument they will be keen to win it, if they have a losing argument they will be keen to shut down all discussion. Perhaps it is almost too obvious, but people should know we cannot trust governments, we cannot trust institutions, we cannot trust industry and particularly not the pharmaceutical industry, particularly if they forever remain politically unchallenged.

The weight of this sad time we must obey:
Speak what we feel, not what we ought to say.

We are being buried by Neurological Development Disorders and chronic disease. These are now a much bigger problem than infectious diseases, but they are not on the public health agenda.

Well done for raising the issue.

John

Angus Files

When I was very young I always had a problem believing that stone age man would crack open eggs and discard the shell (what a waste).
Yesterday I came across an article that explained egg shells are a great source of bio-available calcium if ground up to a powder...no profit in it for pharma so no doubt it will be jumped on from the greatest of heights simply because, it`s not a new frankenpharmaproduct - people have done this for centuries..

The vacuum for alternatives has seen a resurgence because of the ineffective and dangerous Pharma products including vaccines.Aren`t we by human nature meant to be always looking to improve and be thinking of improvements but even think these days is a capital offence only mindless zombies need apply.

I`m a firm believer in the saying` if it ain`t broken don`t fix it` but cowardly pharma needs wiped from the face of the earth- never mind fixed .

Pharma for Prison

MMR RIP

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