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Autism Embargo Imbroglio

Embargo_backwards_is_o_grab_me_tshirt-p235648959065315005t5hl_400 Managing Editor's Note: Read this article from the Asssociation of Healthcare Journalists site about the Pediatrics 1 in 100 study which was embargoed until 12:01am on Monday. We adhered to the embargo. However, we ran the information from the HHS phone call on Friday afternoon HERE, as did David Kirby on Huffington Post HERE. When you click into the full post at the Healthcare Journalists site, scroll down to see some friends of ours mentioned including Ginger Taylor, Teresa Conrick, K. Fuller and Tanner's Dad. Not to mention David, Kirby, Dan Olmsted and AoA.

Mark Blaxill wrote to Andrew Van Dam. You can read his letter at the end of this post.

Autism news raises question: When is an embargo not an embargo?

Oct. 6th, 2009 by Andrew Van Dam

Filed under: Government, Health journalism, Hot Health Headline, Public records, Studies
Are embargoes yet another quaint tradition that, like so many before them, has been pushed into obsolescence by the weight of the Internet? Do so many people have access to so much information they can share so easily that artificial restrictions on publication are meaningless?

Consider: In a Friday press conference, the Department of Health and Human Services discussed, under embargo, highly newsworthy data indicating a much higher than expected prevalence of autism in the United States. HHS didn’t mention, however, that in an earlier call it had already given the most newsworthy part of that information to members of the “autism community,” and had not restricted them from publishing the info. The incident raises serious questions about giving special interests privileged access to data at the expense of major media outlets, as well as the validity of embargoes in an era of increasing media fluidity. Read the full post

Here's Mark's letter to Mr. Van Dam.

Dear Andrew,

I am Editor-at-Large at Age of Autism. Your post on the “recent autism news” was just forwarded to me.

Please forgive me for being blunt, but just exactly what problem do you think you are trying to solve? Are you accusing Age of Autism, David Kirby and/or Dan Olmsted of unethical conduct (apparently not, since you are forced to acknowledge that the only blog that “broke the embargo” is, which is owned by The New York Times)? Are you accusing HHS of breaking the rules of engagement by speaking directly to the autism community about an important new autism publication before they spoke to reporters (perhaps you’d like to, but strictly speaking you can’t because you recognize that what Sebelius and Insel discussed with the community was not the embargoed HRSA report, but rather the exploding rate of autism)? Or are you simply channeling some unspoken annoyance that communications around the official message on the autism crisis somehow got confused and was not neatly packaged and tightly controlled by the CDC and its compliant collective of nearly bankrupt newspapers? Like it usually is.

Or are you simply whining about the fact that the much maligned “Mainstream Media” once again kowtowed to powerful public officials, accepted without question the timing and content of newly published medical information and along the way entirely missed the real story behind the fog of statistical positioning and white-coated condescension?

Get a clue, man! Kirby and Olmsted do. The big story here is that 1% of American children have autism. More than 1 in 60 boys. And in some states (we’ll learn about that some day when the CDC finally gets around to publishing the data Sebelius hinted at and that they’ve been sitting on for years) the rates are even higher than that.

What you ought to take away from this little media kerfuffle is that Dan Olmsted and David Kirby are professional investigative journalists who understand that we are in the middle of the biggest children’s public health crisis in our history, that that’s a BIG STORY, that the government public health establishment has no clue (or no interest in) what is happening and that NIH and CDC have fallen down on the job, calling feebly for more research into (say what?!)…GENES!!

I’ve been privileged to work with both David and Dan at Age of Autism, but can’t claim the same journalism training. I’m simply the father of a child with autism. And I’ve been among those screaming to the void for a decade that we have a major public health crisis and need to do something about it. Back when I was younger and naively believed that the medical profession would respond to facts and data, I even wrote and published a peer-reviewed scientific paper about it (see attached). That was back when 1 in 166 sounded like a lot.

That’s a longer story. But today, in the midst important breaking news in the biggest childhood health story in our lifetime, all you want do is whine on behalf of the “Association of Health Care Journalists” (I wonder why you call yourself journalists instead of publicists for the official medical industry position), that you all missed breaking the story because…well, you didn’t really understand what the story was. Forgive me for not feeling all that sorry for you. I’d prefer that you all did your job.

But gosh, you couldn’t possibly do that, could you? Maybe that would break the embargo.

Mark Blaxill
Cambridge MA




Anne Dachel

Seriously, I could care less about the embargo of the one in 100 rate announcement.

CNN and CBS were the only sources that had any expression of alarm over the stunning increase in autism in just two years. Everyone else--endless pieces in the news---- told us the same thing--- that it wasn't anything to worry about---it didn't mean more kids had autism, it's just that we've expanded the spectrum so more kids can get help and there's all this awareness that didn't used to be there. There weren't calls for answers or words like "crisis" "epidemic" or "alarm." Reporters didn't talk to anyone to seek out more information.

Some sources illogically assured us that this is proof that autism is not related vaccines because the rate continues to increase despite the fact that mercury was removed in 1999/2001.
(The same people who said the rate isn't increasing.)

The rate for autism could be one in 10 and the press would still be telling us that it's all just better diagnosing.

I've written to these people for years, sending critical information to challenge the perpetual cover-up of the autism crisis and NO ONE CARES.

The AHCJ is nothing but a PR firm for federal health officials, the AAP, and the pharmaceutical industry.

Everyday I scroll down to "HEALTH" on GOOGLE NEWS and nothing ever changes. I'm wondering if these journalists will ever recognize how chronically sick and disabled Americans are--ESPECIALLY OUR CHILDREN.

What should have been a front page story everywhere quickly died.

What really must bother these guys is that Huffington and Age of Autism are right out there on the Internet News with sources like the NYTimes and the Chicago Trib.

Anne Dachel

we shall overcome

Great letter, Mark. Now if this guy has any decency at all maybe he'll finally look at the horrible number, the white elephant in the room, and forget about the stupid embargo.

By the way, the hispanic channel Univision did report the 1 in 100 on Monday, although it then offered the opinion of a ped to coat the news ("we are getting so much better at recognizing the symptoms..."). Yes, they are all doing a great job. Our world is becoming more stupid and absurd every day.

WAKE UP, PEOPLE: it is 1 in 100 being made public now, up from 1 in 150 just a few years before, up from 1 in 10,000 a decade before. If they told you these were the exponentially increasing odds for having a child with leukemia you wouldn't even think about having children. The masses would be out on the street pressuring the gov't and the press to find out what's going on, and nobody would have the guts to even mention a stupid news embargo.


I may have missed it but I have yet to hear Fox news say 1 out of 100. I have yet to hear "A new report has come out and 1 out of 91 children have autism" But I may have missed it.

I want to hear them say it!


The article says, "Readers take 'tardy' media to task -- The comments on Kirby’s Huffington Post entry show just how much of a debacle the embargo was for major media outlets. Readers didn’t understand the media’s hands were tied, they just knew that major outlets weren’t reporting on what looked like big news."

Again, Mr. Van Dam can't see the forest for the trees. In focussing on this one question on news embargoes, he overlooks the huge issue that we see every day, which is that the major news outlets are for the most part ignoring or downplaying the tremendous increase in autism and the problems with vaccines.

It wasn't just this embargo which made AoA bloggers so ready to criticize media outlets for not covering these stories. Our frustration has built up over the years.

Mr. Van Dam and Ms. Christensen, if you are interested in how health issues are covered, learn more about the subject matter and then write an article on why vaccine injury is being ignored by most major news outlets (with rare exceptions).

A couple of great books:

Evidence of Harm -- by David Kirby

Changing the Course of Autism - by Bryan Jepson, M.D.

Attend some conferences -- such as DAN! or Autism One or the National Autism Conference coming up Nov. 12-15 in Weston, Florida (see ) Talk to some parents and understand better what these families have been through and why we are so dismayed to see such important issues not covered in the news.


Mark-- thank you, as always, for speaking for the rest of us and four our children. I thought Van Dam's post was insane. This isn't the first time that a commentator on this issue has reminded me of Dr. Lessing from "Life is Beautiful"-- the character who obsesses about riddles in the middle of a concentration camp. The comment I left at the Health Journalism site:

Mr. Van Dam-- you're trying to count jaywalkers on the Titanic.

It won't get through. It seems the editor of the blog is requesting that future posts "stay on topic". Just as you said Mark, the topic is not, apparently, the fact that autism has risen 10,000% within a few decades. It's breakers of embargoes (jaywalkers-- glug, glug).

Cathy Jameson


That was FANTASTIC!!


It's just another version of a slight of hand. Whine about someone not upholding the embargo so no one pays attention to the actual story and the newly released numbers. Where are Penn & Teller when we need them?

Pia Christensen, AHCJ Managing Editor/Online Services

AHCJ appreciates your attention to the post on Covering Health. I just want to clarify that we were posting about a very specific journalistic issue - that of embargoing news for a specific date - and whether the tradition still works in a 24/7 Internet environment.


LOVED reading this! =) Thanks, once again, Mark for not letting ridiculous positions go unchallenged!!!


Thank you, Mark, for informing the gentleman. Apparently grasping the obvious is not his metier.

This superfluous embargo whining is the ultimate expression of a "Me Generation" -- when the journalistic lens is substituted with a mirror.

Keep those cards and letters coming. Persistent drops of water gradually and eventually erode stone.

Kelli Ann Davis

Classic Blaxill!

"The BULL Stops Here!"

Good going Mark.


I don't get it

Was there an embargo on reporting the numbers? I saw the 1 in 100 quoted on both the NBC evening news and on CNN the day I saw it on AoA.

Harry H.

Well said Mark. This guy's missed the entire point.

"It's the numbers, stupid!"

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