AGE OF AUTISM

MERCURY IS IN THE AIR

By Mark Blaxill

It was March 31, 1981, less than three months into Ronald Reagan's first term. The nation had just learned that a mentally ill gunman had shot the president and the bureaucrats back at the White House were trying to figure out what to say and do next. That was when Alexander Haig, the Secretary of State at the time, decided that the most important thing he could do was to reassure the American people. In a famous press briefing, Haig told reporters "as of now, I am in control here, in the White House." Although he would later run for President himself, Haig's delusion of control was brief. (He was also wrong, constitutionally speaking, but that mattered little). Within a couple of hours the Vice President had landed back in Washington DC and any need that some panicked soul might have felt for reassurance from Secretary Haig had quickly passed.

It's a powerful impulse, the need for a sense of control in our lives. Perhaps the only more powerful impulse is the desire among political leaders like Haig to respond to that need by providing reassurances that, indeed, "everything is under control here in Washington. Don't worry your little heads, you members of the public, that anything is amiss or out of order. Just leave all the important decisions to us."

THE FRAGILE BASIS OF GENETIC AUTISM CLAIMS REVEALED BY AN OSOTEN*

By Mark Blaxill

*Original source of the estimated number

In an earlier essay here, I commented on a claim made by the Autism Consortium in a recent study, originally published online in January in The New England Journal of Medicine. In an article that offered up a number of aggressive claims regarding the genetic bases of autism, lead author Lauren Weiss and 21 of her colleagues made the following remarkable statement.

In approximately 10% of patients, autism can be explained by genetic syndromes and known chromosomal anomalies (most of which have recognizable features in addition to autism) including the Fragile X syndrome, tuberous sclerosis, the Smith-Lemli-Opitz syndrome, the Potocki-Lupski syndrome, and…the region (15q11-13) that is affected in Prader-Willi and Angelman syndromes.

MORE BULLSHIT FROM THE APPARATCHIKS

By Mark Blaxill

Some people get a little squeamish when others use the word bullshit to describe a certain kind of bureaucratic doublespeak. Not me.  I like to remind the squeamish among us that bullshit is a precise term in the philosophy of science and it’s entirely respectable to use the word in polite company. To support my case, I point friends to Harry Frankfurt, emeritus Professor of Philosophy at my alma mater, Princeton University, who elaborated on the relevant philosophical concepts at some length in his wildly popular essay, On Bullshit, in which he famously distinguished bullshit from lying.

Bullshitting is not exactly lying, and bullshit remains bullshit whether it's true or false. The difference lies in the bullshitter's complete disregard for whether what he's saying corresponds to facts in the physical world: he does not reject the authority of the truth, as the liar does, and oppose himself to it. He pays no attention to it at all. By virtue of this, bullshit is a greater enemy of the truth than lies are.

WHAT'S SO HARD ABOUT THE AUTISM QUESTION?

By Mark Blaxill

We’ve heard some extraordinary statements in the last week. For the first time in any of our lifetimes, autism has become an active issue in a Presidential campaign, to the point that the major campaigns have all developed an autism policy statement. In questions posed directly to the campaigns (in two cases by A-CHAMP) and to the candidates (in one case by a mother in a town hall meeting), we’ve learned that we have a clear consensus among the three leading candidates about the answer to a simple question.

Question: Do you believe there is an autism epidemic in the United States?

IN SEARCH OF THE ELUSIVE OSOTEN*

[*original source of the estimated number]

By Mark Blaxill

Reading scientific papers about autism can be really frustrating sometimes, especially when smart scientists write silly things. As I’ve discussed in several previous columns here, the autism scientific literature certainly has its fair share of mistakes, errors and downright outrageous comments. The slow response of so many scientists to the crisis facing our children will go down in history as one of the greatest failures in the history of modern medicine

TAKING ON "THE TIMES" OVER MERCURY, VACCINES AND AUTISM

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.

AUTISM, SERIOUS SCIENTISTS AND THE WACKOSPHERE

NOTE: In keeping with the content of this post, we will not allow additional comments that are anonymous or use a pseudonym from another blog. We welcome those of you who would like to post under your own name. Thank you.

By Mark Blaxill

A recent episode of the popular television show CSI:NY made the entertainment news headlines with a novel plot concept. In a clever (and probably lucrative) cross-promotion with the online game called Second Life, the show’s writers devised a story line in which a conflict between characters in the so-called “virtual world” of Second Life spilled over into the real world resulting in a sequence of murders and high speed chases that criss-crossed back and forth between the virtual world of Second Life and the real world of downtown Manhattan. As a fictional murder-mystery about a virtual world, it was fun to watch (I confess to being a CSI junkie myself). But the plot line stuck in my head for a different reason; in their ever-voracious search for catchy plotlines, the episode had an eerie air of prophecy about it. The main point was this: out of control game players in the virtual world killed real people. After a point, their fantasy life was no longer a game. It crossed the line into irresponsible behavior.

ANOTHER LOOK AT HOW IP AND WONG WENT WRONG

By Mark Blaxill

DeSoto and Hitlan’s paper (see accompanying article above) does a thorough job of analyzing the corrected data, but out of professional courtesy, they are somewhat circumspect in detailing the full scope of the errors committed by the Hong Kong University team. Since the journal editor, Roger Brumback, was gracious enough to publish the raw data he obtained from Wong (assuming, of course, that she got it right this time around), an interested observer can check all of Ip et al’s revised calculations for themselves and compare them line by line with the original.

SUPPORT YOUR PEDIATRICIAN, CONDEMN THEIR UNION

By Mark Blaxill

Everybody hates baseball’s new all-time home run king, Barry Bonds, for doing steroids, except of course in San Francisco where he’s a hero. But even in the Bay area, everyone knows that it’s the player’s union that stands in the way of the rigorous drug testing that will take drugs out of baseball. In most national polls, the approval rating for Congress is now down well below 30%, but in local elections voters still re-elect their own Congressman 98% of the time. Lots of people love to criticize lawyers as a group, but when you get into trouble your own lawyer is your best friend. In short, when professional people do their work well, it’s not hard to support the professional you know well even when their official representatives behave badly.

The American Academy of Pediatrics (AAP) is the union of American pediatricians. Their job is to defend the commercial interests and reputations of their constituents regardless of what the larger social interest might be. One activity of the AAP is to lobby the Federal Government to spend more money to help pediatricians to make more money.

MAKING SENSE OF THE CALIFORNIA AUTISM NUMBERS

By Mark Blaxill

It's tricky business to report on scientific events in which you've played a direct role, but there's a new study coming out on Monday about trends in autism rates in California and their connection with falling thimerosal exposure. It's important and timely for me to comment on the findings. But first I need to go back to the beginning of this discussion, since it's one that I started.

On July 16 2001, I gave a brief presentation to a meeting of the Immunization Safety Review Committee of the Institute of Medicine at the Meeting on "Thimerosal-Containing Vaccines and Neurodevelopmental Outcomes" held in Cambridge MA. I won't repeat the entire story, but if you're interested, David Kirby provides an engaging account of this session in his book Evidence of Harm (pages 175-181) and you can find the audio files of the meeting at the following link HERE.

During a fifteen minute time slot I made a number of comments and answered one interesting question. Looking back from today, six and half years later, here's a quick synopsis of what I said.

THE ATLANTA MANIFESTO, PART 8

By Mark Blaxill and Barbara Loe Fisher

Editor's Note: This is the final installment of a "white paper" by Blaxill and Fisher that outlines a new vision of vaccine safety and children's health. Written in 2004 and addressed to CDC Director Julie Gerberding, it is being published here for the first time, many of the concerns it raises have only deepened since then. The document will be available in its entirety on our home page – a statement of principles and practices that form the philosophical foundation of Age of Autism.
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We conclude this white paper with a distress call, not because we are alarmist by natures, but because we share a concern that the default path of vaccine development and safety management will not lead us closer to the hopeful future we described at the beginning of this report. Instead, we fear that the more likely direction will turn sharply toward an even more extreme approach to childhood public health strategy.

THE ATLANTA MANIFESTO, PART 7

By Mark Blaxill and Barbara Loe Fisher

Editor's Note: This is the seventh of eight parts of a vaccine safety "white paper" written by Blaxill and Fisher in 2004 and submitted to the CDC, but published here for the first time. This installment is titled From Conflicts of Interest to True Public Accountability and shows why the most important constituency -- parents and children -- have been excluded by what the authors call the "vaccine development complex."
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Public institutions have the responsibility to carry out public affairs with governance mechanisms that keep decisions free of conflicts of interest and resultant self-dealing by interested parties. As our society has evolved, the influence of well-organized and well-funded interest groups has made avoiding such conflicts of interest progressively more difficult. In the area of vaccine safety, we see serious conflicts between the promotion and management of the childhood immunization program and the exercise of diligence and care in the safety monitoring of the program.

THE ATLANTA MANIFESTO, PART 6

By MARK BLAXILL and BARBARA LOE FISHER

Editor's Note: Age of Autism is publishing this "white paper" on vaccine safety and children's health at a time when the issue has never been more important -- witness the mandate for flu shots just ordered in New Jersey. It was written in response to a blue-ribbon panel's unsatisfactory review of vaccine safety at the CDC -- a panel on which Blaxill and Fisher both served. In this installment -- titled From Safety Last to a Quest for Zero Vaccine Adverse Events -- they call for a Zero Defects approach to vaccine safety in the face of the thousands of adverse events reported every year, a number they point out is far lower than the actual total.

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Members of our organizations (SafeMinds and the National Vaccine Information Center) recall private conversations during which National Immunization Program officials revealed their underlying utilitarian philosophy: parents of vaccine injured children, calling for reform of the vaccination system, were described as "selfish"; adverse events were described as "acceptable losses"; while adverse events resulting in injuries and death were dismissed as either coincidences or the inevitable by-products of the pursuit of the "greater good." Dr. Robert Chen, the man most responsible for setting the tone and direction of NIP safety practices for over a decade, described the end result of a utilitarianism mindset on safety management at NIP in  1999:

"[W]e have been relatively slow in appreciating the importance the public now places on vaccines safety. In fact, much of our resource allocations still unfortunately reflect safety last rather than safety first…Furthermore…we have not been as interested in preventing vaccine-induced illnesses as we are with vaccine-preventable diseases."

AUTISM: WHAT DID CDC KNOW AND WHEN DID THEY KNOW IT?

Part 2 of 2

By Mark Blaxill

From the start of their activities in the Brick Township New Jersey autism study, the CDC's approach had been nothing short of diligent and competent. They responded rapidly to an expression of community concern and fielded a team that began what seemed to be all the right kind of work on the ground. The team generated a response within weeks of mobilizing. They held a press conference to express their support for community concerns about elevated autism rates. If not a virtuoso performance, it was certainly professional.

Then something changed. After their January 1999 press conference, the CDC team went underground.

THE ATLANTA MANIFESTO PART 5

By Mark Blaxill and Barbara Loe Fisher

Editor's Note: This is the fifth of eight installments of a "white paper" on vaccine safety written by Mark Blaxill, Age of Autism's Editor at Large, and Barbara Loe Fisher of the National Vaccine Information Center. Titled "From Herding the Public to Informed Consent," it charts a path from the current coercive immunization mandates to a more balanced and rational approach. Given new efforts to compel vaccination in a Maryland school district, and to add four more required vaccines to the schedule in New Jersey, their alternative vision is especially timely.
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The rising complexity of vaccine risks and benefits makes the assessment of risk far more sensitive to the assessment of such complex trade-offs. But when the guardians of vaccine safety [at the CDC] play a dual role as advocates of program expansion, the potential for bias, conflict of interest and bureaucratic error in these assessments rise when there are no mechanisms in place for self-correction. When advocates of vaccine programs can also exercise the coercive power of the state to enforce their decisions through vaccine mandates, the risks of catastrophic failure multiply.

WHAT DID THE CDC KNOW AND WHEN DID THEY KNOW IT?

(Part 1 of 2)

By MARK BLAXILL

With the recent announcement of the "largest ever" study to investigate the causes of autism, run through Kaiser Permanente (the HMO that lost vaccine safety data implicating thimerosal in harming children) and led by Lisa Croen (the epidemiologist who first attempted to deny the autism epidemic with faulty data), sometimes you just want to shake your head and wonder, what on earth is going on down in Atlanta?

THE ATLANTA MANIFESTO, PART 4

By Mark Blaxill and Barbara Loe Fisher

Editor's Note: This is the fourth of eight parts in our series outlining a new vision for transforming children's health policy in the United States. Written by Mark Blaxill, Age of Autism's Editor at Large, and Barbara Loe Fisher of the National Vaccine Information Center, it is titled From Hyping The Risk Of Infectious Disease To Facing The Reality Of Chronic Disease Epidemics. Blaxill and Fisher were part of a Blue-Ribbon Panel assessing vaccine safety convened by the CDC in 2004. Dissatisfied with the outcome, they wrote their own White Paper in response, which Age of Autism is proud to publish for the first time.

From Hyping The Risk Of Infectious Disease, To Facing The Reality Of Chronic Disease Epidemics

As the vaccine program expands and the complex assessment of marginal cost and benefits becomes more critical, the integrity of the analyses surrounding these assessments matters even more. A prior commitment to a strategy of program expansion casts suspicion on the CDC's internal analysis when the institutional proponents of the expansion strategy control the interpretation and dissemination of information and analysis. The obvious concern is that benefits may be overstated and that risks will be suppressed.

We see pervasive evidence of bias among CDC's analysts that lends credence to such concerns. Hepatitis B vaccine policy serves as useful first case in point.

WHEN MAKING SCIENTIFIC MISTAKES IS A GOOD CAREER MOVE

By Mark Blaxill

A couple of weeks ago, I commented on the good work of Catherine DeSoto and Robert Hitlan who recently exposed a statistical error in a study conducted by researchers at the University of Hong Kong (click here to see the post.)

DeSoto and Hitlan examined a Chinese study that compared mercury in the blood and hair of autistic children with blood and hair mercury levels in typically developing children. And although the first published account reported no significant association between mercury exposure markers in autistic children, DeSoto and Hitlan showed that original authors’ calculations were simply wrong and that their data not only showed evidence of increased mercury exposures in the autistic children, it also showed evidence of impaired mercury excretion, a key element in the theory linking mercury exposure with autism risk.

THE ATLANTA MANIFESTO PART 3

By Mark Blaxill and Barbara Loe Fisher

Editor's Note: Today's third installment in our serialization of this important White Paper on children's health and vaccine safety is titled  "FROM EXPANSION OF VACCINE INTERVENTIONS TO A COMMITMENT TO A TOTAL HEALTH PERSPECTIVE." Mark Blaxill,  Age of Autism's Editor at Large, and Barbara Loe Fisher of the National Vaccine Information Center were invited to be on a CDC Blue Ribbon Panel in 2004 to consider the issue. Dissatisfied with the official report's conclusions, they wrote their own detailed response, which has never before been published. Age of Autism is running the entire document in eight parts through the end of the year; earlier installments can be found under Mark's name on our Home Page. Given the debate over the ever-increasing number of mandatory vaccinations and their possible link to autism and other health problems, the series is especially timely today.
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The Blue Ribbon Panel was convened to consider a proposal to separate vaccine risk management from risk assessment [at the CDC]. We concur with the spirit of this proposal and believe that independence in vaccine safety assessment is overdue. The National Immunization Program has long confused vaccine safety with vaccine promotion. But we also see a deeper force driving the problems with vaccine safety, a force that goes beyond simple questions of organization and governance. The longstanding commitment of our public health leadership to expansion of the mandatory vaccination programs places pressure on the watchdogs of safety to make vaccine risk assessment friendly not just for current programs, but also for new vaccines. Dr. Robert Chen, the official most responsible for vaccine safety over the last decade has openly confessed to this bias in print.

"Given the current increasingly "anti-vaccine" milieu, it is hard to imagine that the full potential of new vaccines will be harnessed. To avoid this impending tragedy, we need to critically examine the factors influencing this change in public sentiments."

- Dr. Robert Chen, Vaccine Safety and Development Branch, National Immunization   Program, CDC, "Vaccine Risks: real, perceived and unknown", Vaccine, 1999.

THE ATLANTA MANIFESTO PART 2

Editor's Note: This is the second of eight installments by Mark Blaxill, Age of Autism's Editor at Large, and Barbara Loe Fisher of the National Vaccine Information Center, who were invited in 2004 to participate in a Blue Ribbon Panel at the CDC on vaccine safety. (Part 1 can be found under Mark's name on our home page.) In light of recent events -- including the threat to jail parents in Maryland who do not get their kids vaccinated -- their alternative vision seems especially timely. This segment is titled: From Waging a War on Disease to Securing Childhood Health:

For those who join high level discussions of vaccine policy for the first time, it is quite surprising to see many CDC officials wearing uniforms. By embracing a military identity, these officials emphasize their unique prerogatives.   That they possess the authority: to deploy the coercive powers of the state as they see fit; to deprive citizens of their liberty in the name of the greater good; and to enforce what they consider to be necessary human sacrifices as they do battle with dangerous microbes and viruses. The language of conflict —  the "war on disease," "combating the causes of epidemic," "fighting emerging infections" — is closely connected to the language of military power and, of course, "Disease Control." History teaches us that when government officials are determined to fight a war, any war, truth can be the first casualty.

WHEN SMART SCIENTISTS MAKE STUPID MISTAKES

By Mark Blaxill, Editor-at-Large

In the Orwellian language of industry-funded research, the world has only two kinds of science: "sound science" and "junk science." So whenever you hear someone attack a piece of work as "junk science" it's time to put your bullshit filters on. Like a political campaign, financially-involved partisans in a scientific controversy have learned that negative campaigning is an effective tactic.

Instead of dealing with facts, analysis and data, the tried and true partisan approach is to launch an ad hominem attack on the character, motivations, the sanity or even the home décor of the targeted analyst. Facts and data are awfully boring after all and most journalists have been conditioned not to actually read the science they cover. Instead, they kowtow to "experts" who filter research for them. And if a fancy-sounding expert denounces troubling work as "junk" or is willing to don his white coat and intone for the camera that "science has spoken" on a controversial topic, well then that's how it is, right?

The Atlanta Manifesto: Safety Last to Children First, Part 1

By Mark Blaxill and Barbara Loe Fisher

Safe Minds and the National Vaccine Information Center (NVIC) are pleased to have an opportunity to present a case for change in our nation's public health strategy. We are grateful to Dr. Julie Gerberding and her staff for reaching out for a range of views on this subject. As parents and citizens, we have joined this discussion feeling the weight of great responsibility on our shoulders, because we see an urgent need for change in public health policy and practice. The health of the children of our country is deteriorating. Yet rather than facing this reality, our public health leadership has turned away from the challenge in order to defend entrenched practices and controversial policies, some of which may have contributed to these adverse trends. Accordingly, we want to make a strong and clear statement: the public health agenda in our country requires comprehensive reform.

“Congratulations! You’ve Been Named to a Blue Ribbon Panel.”

By Mark Blaxill

On one of those rare days that my wife and I were actually sitting down at our dinner table for a normal dinner, the phone rang. It was a Wednesday night and Elise answered the phone. She got one of those expressions on her face that meant, “This is not your average call.” Her voice turned animated and friendly as she seemed to respond to charm with even more charm. As she turned to hand me the phone, her eyebrows rose.

“It’s for you dear. It’s the CDC.”

I soon found myself speaking to a charming young woman, an aide to CDC Director Julie Gerberding, whose name I can’t remember. She was calling to invite me to serve on a “Blue Ribbon Panel on Vaccine Safety” as a “consumer representative.” I would be joining high-ranking representatives from the CDC, the Advisory Committee on Immunization Practices, various universities and other federal agencies. Dr. Louis Cooper, past President of the American Academy of Pediatrics would be the chairman. I had had a hint that something like this might be in the works, having spent some time in Washington DC in the previous few months. One of our friends in Congress had mentioned that he hoped to secure an invitation for a SafeMinds representative to a vaccine safety meeting and I had raised my hand. “I’d be delighted to attend”, I said to Gerberding’s aide. “When does the meeting start?”

“Tomorrow morning at 9:00 AM. It’s in Atlanta.”