A fruitful gutting of epidemic denialism falls victim to the non-sequitur that vaccines cause autism
Review/Commentary
By Jill Escher
“Denial” is one of the best books on autism I’ve ever read. It’s also one of the worst.
The new-ish (2017) book by Mark Blaxill and the late Dan Olmsted is a two-for-the-price-of-one. The first 141 pages ooze with exasperation as the authors solidly refute the ludicrous denialism of the dramatic surge in autism in recent decades. The remainder of the book, suggesting that money-hungry vaccine programs fuel this increase, well, hot damn, it’s like watching a home-run slugger rounding third then shooting himself in the foot before he can score.
Pardon my head-slap here but why, why, why? Why is “epidemic” enduringly coupled with “vaccines”? Why can’t we simply acknowledge the truth of our autism epidemic while equally acknowledging that we still don’t know the causes, since that combination is—based on overwhelming evidence—the real state of things? But more to the point, why ruin what could have been an important book, with potential social value matching Bernie Rimland’s heroic “Infantile Autism” of 1965 (debunking the Refrigerator Mother hypothesis), with conspiracy theory?
DENIAL
By Dan Olmsted and Mark Blaxill
Skyhorse Publishing, 200 pages, $24.99
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But for now let’s focus on the good. Blaxill and Olmsted wallop what they term the “Denier” narrative that today’s autism rates can be explained by shifting diagnostics and better awareness by fine-tooth combing through historical accounts of disabling mental conditions of early childhood. The trove of detail they convey—from Heller-Weygandt syndrome to childhood schizophrenia to Leo Kanner’s early descriptions of autistic children and more—show that it is not only unlikely that much autism existed before births in the 1930s, but that such existence is virtually impossible.
As the authors point out, accepting the “pernicious narrative” that we have an epidemic of awareness, and not a real epidemic of autism, would require us to believe a veritable mountain of absurdities. For example, we would need to believe that 1.5 billion people disabled by autism (and not just the eccentric oddball here and there) through history were overlooked and never described. We would need to believe that in 1943 when Leo Kanner, the leading child psychiatrist of his day and by all accounts a sharply perceptive, experienced, and skilled clinician, described “a number of children whose condition differs so markedly and uniquely from anything reported so far,” that he and his fellow practitioners and researchers were so colossally blind and incompetent they somehow failed to note millions of similar cases. We would need to believe the small Mississippi town of Kanner’s first subject, Donald T., had 60 other autistic residents who escaped absolutely everyones’ attention. We would need to believe that even today hidden hordes of millions of adults disabled by autism, including about half with severe forms of autism, have been systematically overlooked by schools, the military, social services systems, mental institutions and medical practitioners.
Several years ago I read a number of primary and secondary sources describing childhood mental pathologies from the early 20th century, including the heyday of the eugenics movement in the 1930s. Like Blaxill and Olmsted, I struggled in vain to find evidence of anything like my children’s perplexing neurodevelopmental impairments in the literature. Denial goes into much greater depth than I did, but came up with the same conclusion—the plainly disabling autism flooding special ed classrooms today was barely a blip before the 1980s, under any label.
The “Denier” foils that Blaxill and Olmsted choose for this journey into the minutiae of pediatric psychiatric history are authors Steve Silberman, writer of “NeuroTribes,” which preposterously portrays autism as a naturally occurring strange genetic “gift,” and John Donvan and Caren Zucker, authors of “In a Different Key,” which manages to dodge the critical question of increasing rates even as it sets forth a sweeping history of autism.
While I can understand Blaxill and Olmsted’s offense at Silberman’s buffoonish, quasi-religious denialism, and have even blogged my own disgust with his book here, Donvan and Zucker have been mostly mute on this point and their writings have not been strongly associated with denialism. Full disclosure that I am friendly with both Donvan and Zucker, and have expressed to them my sharp disappointment about their book’s vacillation on the autism increase. But I know them to agonize about the mounting adult autism crisis and, unlike Silberman, to lack any inclination to trivialize autism.
But in any case, I felt Denial picked the wrong enemies. In the end, popular nonfiction trade books like NeuroTribes and In a Different Key have little impact on research directions and policy decisions. Rather, it is the scholarly literature—the writings that appear in peer-reviewed scientific journals, the opinions of leading academics—that carry much more weight and have more bearing on legislative suppositions. And on that front denialism is frighteningly rampant (even a sort of insipid fraternity handshake indispensable to a researcher’s in-crowd cred) and many times more dangerous.(fn 1)
Denial touches briefly on a few of these ivory-tower deniers, in particular former DSM leader Allen Frances, who is now little more than a Twitter grump who hyper-simplistically brushes off increases in most mental pathologies, including autism. The book also counters Terry Brugha, lead author of a sloppy epidemiological study that used scant and skewed evidence to assert a 1% prevalence among UK adults. As the authors say, “The flaws with this effort were so numerous it’s hard to know where to begin,” and I invite readers to consult pages 125-26 for details. Also mentioned is Richard Roy Grinker, an anthropologist who blithely attributes the autism explosion to shifting definitions without actually grappling with the data (Silberman luxuriates in the same logic-free mischief).
An entire book could have been written on career deniers like Eric Fombonne, a psychiatrist and epidemiologist whose contorted analyses dismissing a true increase are the Rube Goldberg crazy contraptions of autism, or Simon Baron-Cohen of Cambridge University, a mega-fan of neurodiversity who recently opened the International Society for Autism Research meeting with a pontification about “respectful language” utterly devoid of any sense of urgency. The book should have also mentioned Spectrum News, published by the influential Simons Foundation, which makes a sport out of epidemic denialism in its gush of breathless stories overhyping puny genetic findings and downplaying the significance of alarming reports of ever-increasing rates. To his great credit, though, in his advocacy career Blaxill has hit back hard against bogus science; see this for example, in which California researchers backtracked on a paper suggesting diagnostic shift from mental retardation could account for the autism upsurge. And added kudos for this, a recent paper demonstrating strong upward trends in autism.
After 20 years of involvement in autism research and advocacy, here is the world as I see it— Blaxill and Olmstead are tragically, heartbreakingly correct. Our communities are hemorrhaging autism. Whereas this striking mental impairment was barely seen in schools, institutions, doctors’ clinics, adult programs, and catalogues of pediatric mental disability through the 1980s (again, under any label, and by all accounts that I have seen and heard), our educational, medical and social services are now awash in cases. In California, our developmental services system counted about 3,000 residents with autism in the early 1980s. That number has surpassed 108,000 today. An increasing prevalence of autism has been noted in all states and across the world, with the vast majority of studies finding that sociological factors like awareness and diagnostic shift could at best provide only a partial explanation. My God, 1 in 34 children in New Jersey (we’re talking 3%!) are now found to have autism, by itself a mind-boggling tragedy of stupendous proportions (and not explained by in-migration) that no credible observer has passed off as an epidemic of awareness.
Now, many people reading this review are wondering why I dismiss Blaxill and Olmsted’s preferred idea that the biological force behind this tsunami is the U.S. vaccination program. I should first point out that Denial does not really make any serious attempt to prove that vaccines cause autism on a biological level. Rather the authors resort to innuendo and “follow the Big Pharma money” arguments.
I was not convinced before, and I’m certainly not convinced now. That pharmaceutical companies like profits is not news and is not evidence of causation.(fn 2) There is simply no credible evidence on a molecular, toxicological, neurobiological, or epidemiological basis to tie autism to vaccines. This red herring cannot explain autism’s complex neurobiological underpinnings, its early (fetal period) neurodevelopmental origins, its 4:1 male-to-female sex ratio, the broader autism phenotype in families, its very strong heritability, the repeated epidemiological null findings, or many other phenomena. And of course the pathogen-inviting consequences of non-vaccination can include serious brain injury or death, i.e., the very opposite of protection.
Enough. Done. Kaput. Let’s spend our time, energy and money on concepts that have some hope of explaining this dreadful epidemic, and pull our dumdum selves out of this Dark Age of Autism. To borrow Denial’s own argument, “something new and terrible is happening to a generation of children” and “it’s our moral responsibility to figure that out.” Note to Blaxill, Robert Kennedy, Jr, et al.—this moral responsibility includes… ditching the vaccine hypothesis. Rather, many other biologically promising paths deserve our urgent attention.(fn 3)
In the end, despite the vaccine detour, Blaxill and Olmsted are right to scream to the universe that by this point the denial of the autism epidemic is unconscionable scientific and journalistic misconduct leading to an ”abrogation of our civic responsibilities.” As they say, “we have no experience as a society in which one in 68 [now 1 in 59] children grow into adulthood with autism, we are completely unprepared for what lies ahead: the escalating cost of services, the drain on caregivers, the frailty of elderly parents the ripple effects on siblings and extended family, and the drag on communities in which these exhausted families reside.”
And the costs will be staggering. “The infrastructure to handle this surge in autistic adults—80 percent male, mostly young and physically strong and often violent, and with relatively little capacity for productive work—is nonexistent today,” they write. “Further, the cost to serve this new population is entirely unbudgeted by the state-level disability service organizations that are tasked with providing them, and so will fall in large part to their parents since disability services are not an entitlement and will almost certainly be curtailed as the unbudgeted demand for them rises.”
Bingo. The shameful wave of denialism has facilitated a dithering of monumental proportions and morally repugnant stagnation (even backtracking) on the policy front. In our country’s legislative halls and administrative cubicles one sees little acknowledgment of what has slowly emerged as our country’s most devastating public health crisis. Imagine a scenario where 1 in 59 U.S. children were born without a pinkie, or without an ear. We would see a panicked frenzy from the White House to everyone’s house. But today we face a vastly more dire reality—1 in 59 children with brains that failed to wire up correctly, with most acutely disabled and unable to care for themselves over a lifetime. And what do we get? A nationwide shoulder shrug. Blaxill and Olmsted’s outrage is more than justified.
By the time I reached the end of the book, where the authors describe an autism parent entertaining murder-suicide with their severely autistic daughter after they reach the point of being unable to care for her, I admit I also shrugged. Not because I would condone such a horror, but because I’ve heard the same desperate cry from dozens of other parents who see no realistic care alternatives forthcoming for their beloved and unfathomably vulnerable grown children. Pardon the drama but I must agree with the authors’ suggestion that denialism, and the inaction it invites, will eventually bring death.
Dan Olmsted passed away unexpectedly shortly after the book manuscript was submitted. I mourn this loss even while I lament his role in the anti-vax craze. The autism community lost a journalist who grasped the scope and implications of this epidemic and was unafraid to speak many important truths.
Jill Escher is an autism research philanthropist who serves as president of the National Council on Severe Autism and president of Autism Society San Francisco Bay Area. She is the mother of two children with nonverbal autism.
Footnotes
(1) An insidious willful ignorance pervades the ivory tower, and not just in the research literature. At a dinner earlier this year I sat beside an autism geneticist who insisted there was no true increase in autism, dismissing mounds of data but instead citing the Brugha UK study (which shows no such thing) and the idea that autism used to be called a schizoid disorder (a bold assertion with no data). Last year I had lunch with a well known researcher who remarked that the California developmental services autism caseload had grown more than 30-fold in large part due to parent service-seeking, which is so delusional I almost felt I should have called Adult Protective Services. A few years back I had a meeting with a leading researcher at UCSF. He leaned back in his chair, crossed his arms and said, “I assure you, Jill, there has been no true increase in autism,” and then proceeded to draw me a picture of a house with stick figures on the ground floor, and stick figures in the attic. The ground floor held the identified cases, while the attic held unidentified cases. Voila! Who needs evidence when you can cartoon a fantasy about hidden autistics? And in a phone conversation with one of the top brass at the UC Davis MIND Institute, it was suggested no peer-reviewed literature indicated a true increase in autism (even though UC Davis had, in fact, published such studies). Now, having spilled all this, it seems the real driver of this B.S. is not honest scientific belief, but rather a circle-the-wagons mentality to fend off enduring anti-vaccine sentiment, which is admittedly partially understandable.
(2) I am not saying that vaccination is always safe for every person in every circumstance: all pharmaceutical products pose some risks to some people (just read the inserts). But what I am saying is that inoculations cannot possibly account for the increase in autism.
(3) One obvious hypothesis is the unforeseen adverse heritable impacts of general anesthesia (basically a tampering of a parent’s early germ cells, not a direct exposure to the the ASD child). I have addressed this topic on this website here and more recently in a letter to the National Institutes of Health here, in the peer-reviewed scientific literature here and here, and at several scientific meetings, most recently here, and as I will do here, here, here and here later this year. But this is hardly the only biologically plausible hypothesis of autism waiting in the wings. Others include heritable impacts of other germline genotoxicants (such as intensive doses of tobacco, synthetic steroids, CNS depressants, and anticonvulsants), adverse perinatal events, prenatal immune dysfunction, and certain forms of assisted reproduction.
Other reviews by Jill Escher
Bryna Siegel Truth-Bombs Autism
The Horrifying History of Hans Asperger
"Immersed" Takes an Unflinching View of Severe Autism
NeuroTribes: One Step Forward, Two Steps Back for Autism
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