By MARK BLAXILL
This letter was sent Sunday by Age of Autism Editor at Large Mark Blaxill to Clark Hoyt, Public Editor of The New York Times.
Dear Mr. Hoyt,
Your column this week stumbled for the first time on your watch into the controversial territory regarding autism. There is much complexity here and I won't even attempt to offer a comprehensive response to your comments surrounding the Eli Stone episode. But I do want to take a moment to respond to your framing of the debate.
You referred back to the story by Gardiner Harris, so infamously and unfortunately titled "parents vs. science" and assumed that his cartoon of how the debate over autism has been engaged was accurate.
When that article was published, I wrote to your predecessor to protest both the specific story and the broader approach the Times has taken on autism coverage. I have attached that letter here [see below]. This and related communications may or may not have been preserved in the Public Editor's institutional memory. Suffice it to say, Harris (who has covered the pharmaceutical industry more recently with greater insight) did not do his best work here.
More broadly, the suggestion that parents somehow stand in opposition to an all-knowing abstraction named "science" (as if there is a single voice that speaks for the pursuit of evidence and knowledge) and have no support among trained and practicing scientists is simply false. I could cite mounds of evidence in favor of this point, but let me mention a few highlights:
* Several of us initiated, helped organize and participated in a meeting sponsored by the Institute of Medicine called: Workshop on Autism and the Environment: Challenges and Opportunities for Research. You can find the link to the proceedings HERE. The discussion was a small step, but an important one in recognizing the importance of the science many parents are asking for and the kind of positive dialogue that can result when scientists ignore propaganda and sit down to discuss tough problems.
* Autism advocates continue to demand that more resources be placed into autism research (via the Combating Autism Act), are frequently invited to participate in important gatherings at the National Institutes of Health and are working hard to influence the
direction and productivity of scientific investments into autism's rise. Leading scientists frequently seek us out for consultation; for instance, last month I hosted [deleted for privacy] for a private two hour conversation in my home.
* Some of us are sought out to participate in the process of peer review of autism science. Many of us have been involved in peer review, but I can most easily cite my personal experience: in the last few years, I have personally been invited to review articles in [list of several leading scientific journals]. It would appear that the editors of these scientific journals seem to believe that our opinions might have some value, even if they may not want to proclaim the point publicly.
* Parent groups continue to sponsor research on the environmental factors underlying the dramatic (and all too real) explosion in autism rates and, despite the difficulty of obtaining funds for environmental factors research, continue to make progress. In the process, we are learning a great deal about the complexities of the issues that face us; at the same time, we are finding increasing evidence supporting a role for mercury and vaccines in the causation of autism.
* In parallel with all this activity, we find ourselves increasingly forced to address the miserable performance of our leading journals and newspapers in covering the autism crisis. And so we find ourselves with little choice but to form news outlets of our own. I would invite you to visit Age of Autism, an online autism newspaper headed up by Dan Olmsted (an award-winning investigative journalist). There we cover autism science with the rigor, passion, objectivity and professionalism so sadly lacking from today's print media.
I do not doubt that your reporters may have difficulty in finding scientists willing to speak out on behalf of our community's concerns. ... But we have no difficulty in finding scientists who will lend us support privately, indeed quite a large number of them cheer us on. The sad fact, however, is that any practicing scientist with a brain knows full well that they are committing career suicide if they come out too openly in support of our concerns. There are enough examples of censorship, intimidation and retribution that only the most confident and courageous scientists are willing to stick their necks out and say what they believe. In the meantime, the public health orthodoxy, aided and abetted by their pharmaceutical sponsors, does a pretty good job getting their position out there.
I would encourage you to invest a bit of time in learning more about the autism controversies. As a parent, I'm obviously an interested party, but I can't imagine a health story that more clearly defines the modern health challenges we all face. The New York Times has not distinguished itself in its autism coverage, but there's always a chance, if we can promote open and responsible dialogue, to turn that performance around. If you're interested to make an investment in learning more about the issues, I'd be happy to arrange an in person meeting, as several of us did with your predecessor, Barney Calame.
I'd welcome the chance to give you some perspectives you may not have heard clearly before.
Mark F. Blaxill
Letter from SafeMinds to previous Public Editor following the Times'
"Parents vs. Research" story
June 27, 2005
The Public Editor
The New York Times
229 West 43rd Street
New York, NY 10036-3959
Dear Mr. Calame:
We are writing to you as the Public Editor regarding concerns with The New York Times'
coverage of the autism epidemic. In Saturday's publication, our organization was mentioned in passing in a particularly unfortunate story on the autism-mercury controversy ("On Autism's Cause: It's Parents vs. Research" by Gardiner Harris and Anahad O'Connor, June 25, 2005). In a backhanded way, the story acknowledged our active contributions to the scientific investigation of the causes of the autism epidemic, but the story otherwise lacked balance, omitting in particular the broad body of well-conducted science on which parents rationally base their worries over the link between autism and mercury exposure. The poor journalistic choices made in this story provide support for our protest, but our broader concern is the pervasive editorial bias of The New York Times' Science and Health editors, of which this most recent piece is merely a reflection. As someone who is new to the Public Editor role, we urge you to invest time to investigate the issues here with the full objectivity that your editors appear to lack.
The autism story is simple, but the most basic facts are frequently lost in a fog of misdirection and propaganda.
• There is an epidemic of autism in America today. Rates of full syndrome autism have increased more than tenfold, from less than 3 per 10,000 to roughly 40 per 10,000. The prevalence of all autism spectrum disorders has risen to 1 in 166 children. Something terrible has happened to a generation of children.
• Our institutions of scientific leadership have ignored the implications of this epidemic.
In fact, CDC epidemiologists have encouraged complacency by suggesting that the reported increases are an artifact of "a broadening of the diagnostic concept" and "improved awareness" of autism. Not a shred of evidence supports such speculation, indeed, specific hypotheses attempting to explain away the increases have been falsified every time they have been tested. Yet the CDC remains more interested in defending their cherished public health strategies (and in asking the loaded question "are vaccines safe") than in asking the critical question: why are so many more children sick?
• The epidemic of childhood autism demands a search for an environmental cause. One known agent of neuro-developmental disorders is mercury exposure. Leading scientists
and a substantial body of research support the biological plausibility of the link between mercury exposure and autism. In several countries, increases in autism rates have paralleled increases in mercury exposure. Environmental scientists have concluded that mercury exposure through fish consumption is dangerous, requires active regulation and should be proscribed for women during pregnancy. Yet how can mercury be dangerous when it goes from power plants into fish, benign when it comes from dentists and is placed in your mouth and absolutely safe when injected into an infant or pregnant woman's blood stream? As a friend of ours, Shelley Reynolds, has so eloquently put it, "giving mercury to children on purpose is stupid."
• Ethyl mercury is a toxic substance and deserves consideration as a causal factor in autism. Although far less is known about the dynamics of ethyl mercury in the body, and despite widespread speculation to the contrary -- ethyl mercury is the "gentle" mercury; ethyl mercury is excreted from the body rapidly; ethyl mercury doesn't cross into the brain—toxicologists have become increasingly concerned over the toxicity of ethyl mercury, the species of mercury used as a preservative in some vaccines. Strong evidence supports these concerns: autistic children have impaired capacity for excretion of mercury; ethyl mercury leaves the blood rapidly but does not necessarily leave the body; ethyl mercury readily crosses the blood brain barrier, where it decomposes quickly into inorganic mercury. In a recent study of infant primates, more than twice the amount of mercury was trapped in the brain after vaccine exposures than equivalent methyl mercury exposures. In the absence of other plausible environmental causes, common sense demands we consider the role of ethyl mercury in the autism epidemic.
• With biomedical treatment, the health of autistic children often improves. Recent studies have demonstrated that abnormal autistic brain function may result from impaired long distance connections in the brain. These long distance connections have been linked to enlargement of white matter (the long distance wiring area of the brain) and a type of chronic neuro-inflammation known as microgliosis. Mercury trapped in the brain causes microgliosis, which in turn involves a strong proliferation of these cells and unusual brain growth. With the clock ticking on our children's development, many parents have felt compelled to act based on three strategies: 1) reduction of inflammation of all kinds and 2) boosting the body's natural detoxification capacity and 3) direct intervention to remove heavy metals (or chelation). The gold standard clinical trials of medical science have not been available to sort out the relative efficacy of these treatment strategies, but parents share experiences and they report this: When working in partnership with sympathetic doctors to counteract inflammation and toxicity, parents are finding their children's health improves, in many cases dramatically.
As a parent community, we have much work to do to fill in the missing pieces in the puzzle. But as responsible parents we cannot sit still and wait for a complacent medical establishment to face up to the emergency that is the autism epidemic. We have no choice: we must stand up for our children; we must stand together in our work; and we must demand accountability and action from the public health authorities who fail our children every day they go to work. And we must point out the failures in other important institutions, including The New York Times, for whom SafeMinds has great respect.
HARRIS AND O'CONNOR'S STORY
Unfortunately, your reporters in Saturday's story missed all of these simple points. They quoted vicious criticism from public health officials without challenge and selectively cited the most bizarre comments they could find from parents What a spectacular display of unbalanced presentation this story was! For those of us who are loyal readers of The New York Times, we must reluctantly confess that this bit of yellow journalism would have made William Randolph Hearst proud. Although we had not expected a glowing treatment based on our interactions with the reporters, the final story left us gaping in disbelief.
We don't know how much of this was bad reporting or biased editing.
But we know your reporters had full knowledge of the issues cited above because the three of us spent many hours with them in phone and email conversations over many weeks. Although in large measure these were professional conversations, we did find their reporting methods careless in a number of respects. We attempted to meet with them on several occasions in person; they missed appointments. We provided them with reams of scientific evidence (including numerous peer- reviewed articles, some which had been written or funded by us) supporting our concerns; they claimed we rely primarily on the work of one group that we have never funded. We refuted false assertions that autism rates went up while mercury exposure went down; they repeated these as truths.
More troubling are some issues of personal conduct. Numerous parents recognized early in the reporting process that Mr. Harris (Mr. O'Connor conducted himself professionally) attempted to goad parents into making inflammatory statements and to express their angry "feelings." In interviews with SafeMinds, Mr. Harris repeatedly urged one of us to denounce the CDC for criminal behavior and to voice our angry feelings towards them. In retrospect, his strategy was clear, since the prevailing outcome of the report was to draw a cartoon portrait of the autism parents' movement as a desperate, rural, illiterate, Bible-thumping, non-scientific, violence- prone bunch of loonies. The article's sub-title, "parents vs. research", sums up the intent nicely.
The article itself was a relentless screed of ad hominem attacks on parents of autistic children.
According to Harris and O'Connor's reporting, we are:
• Illiterate. "It's really terrifying, the scientific illiteracy that supports these suspicions", claims Dr. Marie McCormick. Based on past interactions, we suspect Dr. McCormick is
more terrified to be challenged by the merits of the scientific arguments that we and other scientists have offered to counter her opinions.
• Opposed to science. Ms. Kristen Ehresmann, a state public health official is said to opine, "that's really scary for us because if science doesn't count, how do we make decisions."
We seriously doubt that Ms. Ehresmann has ever read any of the relevant science here.
Our experience with most medical professionals is that they read little primary research, relying instead on the official interpretations of the CDC, which is in this case an interested party.
• Potential terrorists. Based on a single cryptic email message, your reporters intone that "in response to the [sic] threats, C.D.C. officials have contacted the Federal Bureau of Investigation and heightened security at the disease control centers." Some autistic
parents are certainly angry with these officials, but intimating that a community of mobilized parents is a threat to national security is fear-mongering.
• Acting out of desperation. Your reporters located a solitary parent who has become disaffected from the biomedical movement to testify that "many parents are desperate.
Dr. Jim Laidler…said that after he learned that his two sons had autism, 'if someone had e-mailed me that powdered rhino horn worked, I would have gone off on safari.'" All we will say here is that Dr. Laidler is a fellow parent and he represents an uncommon and extreme point of view among parents.
• Placing our children in danger. "Dr. Susan Swedo of the National Institutes of Mental Health said the use of drugs to remove metals from the body, called chelation, could cause liver and kidney damage and other problems. It 'isn't responsible to prescribe' chelation for autism." We would suggest that it is up to each parent to decide whether or not to seek treatment, when the weight of the evidence suggests that your child is sick and when the NIH experts like Dr. Insel are on record as having no idea what is causing the autism epidemic and have no promising treatment trials in process despite the increased numbers of affected children.
• Duped by unscrupulous doctors. "Experts say they are also concerned about a raft of unproven, costly and potentially harmful treatments - including strict diets, supplements and a detoxifying technique called chelation - that are being sold for tens of thousands of dollars to desperate parents of autistic children as a cure for mercury poisoning." As with all such comments, we welcome the so-called experts' concern for our financial welfare.
In case they missed it, the parent community is highly informed and continuously compares experiences with both treatments and doctors through a very strong support network. Incompetent doctors, unhelpful treatments, and overcharging are exposed with alacrity.
• Speaking to God. In describing the proponents of the autism mercury theory, your reporters took pains to describe "a doctor from Baton Rouge, La., who says that God spoke to her through an 87-year-old priest and told her that vaccines caused autism." As a diverse group of parents, we have found that autism does not discriminate based on religious belief (despite early reports that mothers of autistic children were coldly rational, "refrigerator mothers"). The inclination to express religious beliefs publicly is on the rise in many parts of our society and is certainly not limited to the autism community.
There are two unifying threads in this screed: as a parent community, we are dumb as rocks and your readers should be afraid of us. I don't think I've ever seen a more blatant form of character assassination in your pages.
As an organization, your report made it clear that SafeMinds was a big part of this cartoon picture. Contrary to your editors' negative portait, we are devoted parents, successful professionals, Ivy-League and post-graduate educated and scientifically sophisticated. Rather than being enemies of research, we have invested large amounts of our personal time and financial resources to supporting researchers from prestigious universities. We have also published numerous scientific articles ourselves, including the landmark study that placed the autism-mercury hypothesis in the scientific literature.
It is worth noting that, in contrast to Harris and O'Connor's report, another journalist who has worked with The New York Times, David Kirby, has drawn a sharply different portrait of our community, one that gives our issues far more credit and engages in far more depth with the scientific evidence that we find compelling. We suggest you read his recent book, Evidence of Harm (St. Martin's Press, 2005), if you want to see the parts of the story that Harris and O'Connor left out. Along the way, you would meet a host of highly regarded scientists, including Dr. Mady Hornig of Columbia, Dr. Jill James of the University of Arkansas, Dr. Richard Deth of Northeastern University, Drs. Raymond Palmer and Claudia Miller of the University of Texas, Dr. Thomas Burbacher of the University of Washington, Dr. Carlos Pardo of Johns Hopkins University and Dr. Martha Herbert of Harvard University. You would also find that articles and letters by the leaders of SafeMinds have been published in journals such as the Journal of Autism and Developmental Disorders, Public Health Reports, the British Medical Journal, the Journal of the American Medical Association, the International Journal of Toxicology, Medical Hypotheses and Neurotoxicology. We defy your reporters to find another disorder in the history of medicine in which a parent organization has made such influential contributions to the scientific literature.
Rather than opposing science, at SafeMinds we are embracing the process of scientific discovery directly and influencing the course of debate. Because we are competent participants in this debate, we are capable and determined to challenge the choices of the scientific bureaucracies and the conventional wisdom among traditional practitioners of autism science: we find it unacceptable when autism research money is wasted on the wrong areas; we find it remarkable when trained scientists dismiss the gravity of the autism epidemic when every ounce of evidence points to a crisis; we raise objections when sloppy designs and biased interpretations work their way into important studies. In the broadest sense we are working to set a different research agenda, one that faces up to the reality of environmental causation and focuses resources in ways that will most effectively help our children.
Perhaps that is why officials like Dr. McCormick find us so terrifying: because we are informed, critical, demanding and correct. In a sense, we are competing with her and others like her to interpret the evidence. Most bureaucrats dislike competition, but history teaches us that in a world of healthy competition and open debate the truth is always the winner.
Unfortunately, this most recent story is not a rare exception to an otherwise praiseworthy record of autism coverage. As many of your reporters and editors can tell you, we have been active critics of the autism coverage at The New York Times for many years.
The New York Times is not alone in its poor performance, but while the trend in many areas of the media has been positive, your editors have clearly become entrenched around a quaint, but illusory perspective.
We suggest that you run a search of stories on autism in the pages of The New York Times and read through the archive. In these pages, your world of autism is populated by familiar characters and inspiring themes: compassionate doctors who are "finding autism soon enough to fight it" (12/04/04).; concerned health officials who are "calming parents'
fears about environmental hazards" (7/13/04); heroic scientists who are consistently "lifting the veils of autism, one by one" (2/24/04), narrowing the "focus… in the search for autism's cause" (2/8/05) and even looking empathetically "through the eyes of autism" (6/11/02); and (of course) desperate parents (and for that matter often loony ones) who are "running a frenzied race to get help" (1/30/04), "taking a leap of faith" (12/27/04) and of course taking a position "vs. research" (6/25/05).
Unfortunately, this is a picture that ignores the central issues and bears little resemblance to reality.
A single story has covered the autism epidemic in depth, noting that "autism cases up; cause is unclear" (1/26/04): it was "balanced" but thereby gave credence to the epidemic naysayers. Two other brief stories covered the epidemic directly. One reported that "autism diagnoses double in California" (5/14/03), but it was buried on page 20. Another shorter report (1/1/03) noted that a "study shows increase in autism." Notably, the reporter said that the study "attributes some of the increase to widened definitions of disorder" and failed to go any farther.
The real world of autism is very simple for parents. In our world, beautiful (meaning also non-dysmorphic) children develop normally for 6 to 36 months and then regress. This mysterious regression brings with its descent a hellish new existence complete with head banging, smearing of feces, frequent seizures, struggles for services, depleted finances, frequent divorce and unremitting pain for the family. In our world, mainstream doctors and institutions are rarely wise and helpful.
In our world, we see a story of institutional failure. While you report favorably on genetic research, we see millions of excess spending with no replicable results of any kind. While you ponder the fine points of DSM IV asking whether autism rates have increased, we see the inexorable rise in reported cases and we know these cases are real children, from real families all of them struggling for increasingly constrained service providers.
While you disparage parents for using unproven interventions, you fail to ask why our science and medical institutions invest so little in clinical studies. When we ask for diligent investigation of plausible environmental theories, the best we get from The New York Times is a single story, appropriately titled "The Not-So-Crackpot Autism Theory" (12/8/02).
* * *
We respectfully ask for an internal review and critique of this history of bias and neglect. We believe that this story is the largest childhood health crisis in our country and deserves an investigatory mindset. As we offered to Harris and O'Connor and others before them, we are happy to meet with the editorial staff who have set this policy and discuss the issues and evidence. Thank you for consideration of our request.
Mark F. Blaxill, Lyn Redwood, Sallie Bernard SafeMinds
Mark Blaxill is Editor At Large for Age of Autism.