Well Being

Trying to Get the Story Straight: Autism, Mercury, and Making History

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Lots of nights and driving in my car thinking the same. With Charlie, January and February are “moody” months—winter is settling in, the changing of the year—-so much for her (for you) to work through. I do “let” Charlie spend a lot of time at home “chilling out” with his blanket and things: It just seems to take more time for him to work through and experience changes. You've all had a lot to go through and more ahead: Your plans and thoughts are all ahead and onwards and you'll get there. But a bit of rest along the way is good……

Not exactly surprisingly, proponents of the theory that mercury, and in particular mercury in the form of the preservative thimerosal, causes autism (such as Safe Minds), are less than pleased with the January 7th Archives of General Psychiatry study which found that exposure to thimerosal in early childhood is not a primary cause of autism. These responses suggest the extent to which proponents of such a link must increasingly strain to make and maintain their arguments in the face of scientific evidence.

In a January 6th Age of Autism post, Mark Blaxill, Safe Minds Vice-President, seeks to “make sense” of the “continued increases in autism rates” by first describing these in alarmist rhetoric as a “national emergency” and “public health crisis”; he also couches his response with words that subtly seems to acknowledge the findings of Schechter's and Grether's study: The evidence (says Blaxill) for a mercury-autism link has not “generally” changed (“generally” suggesting that there has been some specific sort of change), while the “plausible theories regarding the biology of excretion and toxicity of mercury compounds and their different effects on the developing immune system, gastrointestinal system and brain haven't been affected a single bit.” However, these “plausible theories”—theories that are “apparently reasonable and valid”—are better termed “hypotheses” and are based on scientific studies of dubious validity. Like other proponents of a mercury-autism link, Blaxill notes a number of (maybe not exactly “plausible”) ways that young children might still be exposed to mercury (including “rising environmental mercury burden from coal burning in China”; David Kirby has also suggested that “mercury from cremations was increasing environmental mercury toxicity and offsetting the decrease in mercury from thimerosal”).

Blaxill adopts a thoughtful, if sad and rather world-weary, tone in his post, which is somewhat autobiographical: His post opens with “it's tricky business to report on scientific events in which you've played a direct role”—on events of which he was, according to his post, a great part; he stresses that the study “doesn't say thimerosal is safe” (indeed not; this was not the stated objective of Schechter's and Grether's study) and suggests that those who think “clearly and compassionately about the children and families” still need to be concerned about this. Another Age of Autism post, published on January 8th by J.B. Handley, is somewhat more feisty in tone. If I may refer to some literary examples, if Blaxill's post recalls the woeful stoicism of the Trojan prince Aeneas, relating the story of the fall of Troy in Books 2 and 3 of Virgil's Aeneid, Handley's post, entitled New FOIA Emails Show: Grinker Speaks and the CDC Listens, has something more of the defiance of Tamburlaine the Great in Christopher Marlowe's play of that name:

I hold the Fates bound fast in iron chains,

And with my hand turn Fortune's wheel about;

And sooner shall the sun fall from his sphere

Than Tamburlaine be slain or overcome.

This is the beginning of Handley's post:

Meet Roy.

Roy Richard Grinker is Professor of Anthropology, Human Sciences and International Affairs at the George Washington University. It’s worth noting that his Dad and Grandfather are somewhat famous psychiatrists. He wrote a book about autism called Unstrange Minds. Two things are interesting:

1. The book was written with the help of a $120,000 grant from Autism Speaks. ……………….

Meet Marshalyn.

Dr. Marshalyn Yeargin-Allsopp is a CDC employee and sits on the Scientific Advisory Board of Autism Speaks. She helps determine where Autism Speaks directs research funds. Here’s an excerpt from a speech she gave about autism:

“Dr. Marshalyn Yeargin-Allsopp, a specialist in pediatric neurodevelopmental disabilities, delivered a speech on “Autism: Is There an Epidemic?” at the annual Andrew J. Kirch Conference at the Burgundy Basin Inn in Pittsford…………………

Meet Cathy Rice, and Thank God for The Freedom of Information Act (FOIA.)

Cathy Rice, Ph.D., is part of the Developmental Disabilities Team at the CDC. According to private emails the Age of Autism recently obtained between Ms. Rice and Roy Grinker, she really liked his book.

Etc.

Handley then includes a link to a PDF file containing email correspondence among Grinker, Yeargin-Allsopp, and Rice that (Handey trumpets) was obtained through the FOIA. He expresses grave alarm about “white spaces” in the emails, uses phrases like “privately funded epidemic deniers” in reference to Grinker (with whom Iwrote this essay), and builds up to a roaring climax (“What in living hell is Autism Speaks doing funding an epidemic denier”) by the end of his post.

The actual emails are a bit more commonplace in tone than Handley's rhetorically rich post would suggest. If you have read his previous postings on Age of Autism; or his various writings and pronouncements on autism, mercury, and so forth elsewhere; or if you have read what Orac at Respectful Insolence, or Kevin Leitch at Left Brain/Right Brain, or Autism Diva, have written about the mercury-autism hypothesis and debate—indeed, if you have read the numerous publications, on the internet and in print, alleging a connection between mercury in vaccines and autism, and, too, between vaccines or something vaccines in autism, you may not well be surprised that Handley has been able to read a lot into a rather ordinary email exchange, the context of which Handley is guessing at (hypothesizing), without knowing the whole story. A commenter suggests that the emails sound “like a plot line for the next Hollywood mega blockbuster” and I rather think that Handley is crafting a script that utilizes more than a little of his imagination.

Handley's post suggests that he is looking for a sort of narrative; that he is seeking to order—perhaps rather to force—events and material and information to fit a certain storyline. He seeks a certain narrative of conspiracy among the higher-ups, among those in power (anyone working for the CDC, in this case), those who hold the purse strings (Autism Speaks), and those who are experts (professors……..). Kirby's 2005 book, Evidence of Harm: Mercury in Vaccines and the Autism Epidemic, similarly suggests that there is some conspiracy between a complacent medical establishment and “a federal government rife with corruption from corporate dollars,” against whom “courageous families” are on a mission to seek “help for their sick children” (see VACCINES & AUTISM: Myths and Misconceptions: The Anti-Vaccination Movement by Steven Novella, MD). When I read a post such as Handley's in Age of Autism, or a narrative such as Kirby's, I sense a strong authorial intent at work to find conspiracy and complicity, all in the name of “saving the children,” of preserving the next generation (indeed, Handley is the founder of an organization named Generation Rescue).

No surprise here: As another professor writes in a just-published book on Autism and Representation, “The American literary marketplace clearly privileges if it does not demand narratives of heroic triumph over seemingly insuperable obstacles”—what more “insuperable obstacle” than the authority of doctors, of the medical establishment. A doctor, my father used to say to me, can save life, and that's why doctors are so important.

The sentence just quoted is from the first chapter, “No Search, No Subject?: Autism and the American Conversion Narrative,” of Autism and Representation, and it is by James T. Fisher, who is my husband and a cultural historian. I have a lot more to say about Jim's essay and the many other essays in the book (which includes one on “metonymy and the language of autism” by myself), but for now I quote:

The American literary marketplace clearly privileges if it does not demand narratives of heroic triumph over seemingly insuperable obstacles. In recent years in autism literature, those obstacles have come to include ………… pharmeceutical makers (see the women whose transformed lives are chronicled in David Kirby's best-selling Evidence of Harm) and the pediatrics establishment. The latter two interest groups were tackled head-on by Karyn Seroussi in Unraveling the Mystery of Autism. Seroussi and others have generated a subgenre of autism recovery narratives that—in their focus on dietary purity, alternative medicine and the purging of toxins through such practices as chelation—evoke a venerable American tradition of conversion/recovery through avoidance of contaminants both physical and spiritual. The most successful of these works obscure their own literary/therapeutic sources and smooth away autism's rougher edges. Sometimes they occlude the autistic subject altogether, leaving in its place a born-again self shown of memory or history.

Blaxill, via his references to his research on the California autism figures, and Handley, via his tenacious advocacy for a mercury-autism link and of the use of “such practices as chelation” to detoxify sick/autistic children, present themselves as history-making subjects who, likes Davids against the ready Goliath of the CDC and other government agencies, keep slinging stones and barbs of blog posts and full-page ads. They, and other proponents of a mercury-autism link, are indeed caught up in a historical moment, in which information about, interest in, and even understanding of autism is at its greatest ever and keeps growing:

Changes in clinical and diagnostic practices, administrative codes, and epidemiological methods can account for enormous shifts in numbers of cases diagnosed. The dramatic increases in the numbers are cause by several changes acting in concert changes enacted by a series of key players who raised the visibility of autism and made it a cause worth fighting for.

Who are these key players? They include scientists, clinicians, parent advocates, philanthropists, educators, speech therapists, psychologists, and behavioral intervention specialists, among others. Not one of these groups has the power by itself to create or declare an epidemic. But together they have that power. And these key players operate in our culture—-a culture that, for better or for worse, gives labels to people different from the norm, a culture in which new pathologies are continually discovered or invented, and in which new research hypotheses and data are diffused globally with a single keystroke, creating a force that is unstoppable. These are the conditions that led to the perfect storm of the autism epidemic.

This sentences are from Grinker's Unstrange Minds: Remapping the World of Autism—-just so there are no surprises, you can check his book (ch. 7, “Autism by Numbers,” pp. 171-2) to make sure that I am not quoting him out of context.

I wish to cast no undue surprises.

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