Autism rate of 1 percent, and the embargo that wasn’t

7 Oct

Someone at the CDC screwed up. There, I said it.

That’s the bottom line of the story, in case you don’t want to plow through this rather messy story.

Two stories out today are discussing how the 1% autism prevalence story has been handled by the government, the AAP and the media. An emphasis is being placed on how the information embargo was handled and, possibly, mishandled.

One at the Covering Health blog is titled, Autism news raises question: When is an embargo not an embargo?. The second story, at National Public Radio, is titled When News Breaks On Autism, Who Gets It Out First?

Let’s go through the history of this story to unravel a bit of what happened.

This past summer, two studies were in press discussing the autism prevalence in the United States. The first study, based on data from the National Children’s Health Survey, was to be published in the Journal Pediatrics. (This is the one just published) The second study is a CDC report, in the Morbidity and Mortality Weekly Report (MMWR) series. Previous MMWR’s have given us prevalence numbers of 1 in 166 (based on data taken in 2000) and 1 in 150 (based on data taken in 2002).

Someone at the CDC leaked information about these studies to Lee Grossman. Whether Mr. Grossman approached the CDC employee or the other way around is unknown. There also isn’t any information on whether Mr. Grossman was supposed to keep this information confidential.

What is known is that Mr. Grossman publicly discussed this information at an Autism Society of America meeting in July.

Mr. Grossman also discussed this information with Mr. Kirby. How exactly that exchange came about we don’t know. Mr. Kirby has given a version of the story on his blog, but he has also shown himself willing to lie in order to protect a source.

Mr. Kirby blogged information about the two studies on August 11th. He did not name pediatrics as the journal, but he did note that the study would involve the NCHS data.

The pediatrics study was scheduled to come out this week (Monday, October 5). As is usual, the American Academy of Pediatrics released information to the press the week prior. These releases are made so that the press can prepare well researched stories to be published coincident with the paper. The press are not allowed to disscuss the story until the “embargo” was lifted at 12:01 eastern time, Monday Oct. 5.

The embargo system is actually a quite good one. This insures that the press has the time to put together well researched, thoughtful stories on a given topic. The writer who spends a lot of time on a story isn’t penalized by some guy slapping together a quick story to make a scoop. It’s a win-win: the press get to write better stories, and groups like the AAP get good press coverage.

But what do you do when someone has already leaked part of the story? To make it even more complicated, there were really two stories here: the Pediatrics paper published on Monday and the MMWR that isn’t published yet.

Understanding the high level of interest in the story, the U.S. Government decided to hold a conference call with the press. They planned their own data–the MMWR. In this way, journalists covering the Pediatrics story could include the MMWR without having to rely on the bits and pieces leaked by Mr. Kirby.

This call was scheduled for last Friday (Oct. 2) at 3pm.

The information from this call was embargoed. From the NPR story:

“Both the CDC overview and the HRSA study [in Pediatrics] were embargoed, because the subject nature was obviously so similar,” a spokesman for the National Institute of Mental Health told Covering Health. “It just wouldn’t be appropriate to not have the CDC following the same set of guidelines as the HRSA study as it relates to the embargo.”

This call was at 3pm.

The U.S. Government decided early Friday morning to hold a second conference call for autism advocacy organizations. This call was scheduled for 2pm, and did not include embargoed information. They didn’t discuss the details of the papers, just the new prevalence numbers (about 1%).

The Age of Autism blog posted the announcement and call in number.

According to Andrew Van Dam at Covering Health:

CDC spokeswoman Artealia Gilliard told AHCJ on Tuesday afternoon that everything in the 3 p.m. press call was under embargo, while nothing that would have been covered by that embargo was mentioned in the earlier call with the autism community. In particular, Gilliard said, no specific prevalence rate numbers were given out on the call.

“We basically said ‘On Monday, two studies will come out. They will update the prevalence estimate we previously had.’ … It didn’t actually have any of the information that was embargoed.”

Gilliard, who was on both calls, specified further: “I know they didn’t put out numbers in the advocacy call. I know we didn’t say 1 in 100. What we’ve been saying is ‘approximately 1 percent of children.’”

So, we have two conference calls, discussing much the same information (about 1% prevalence). One was embargoed and the other was not.

David Kirby blogged the story right away on Friday. Mr. Kirby starts his post with:

Washington loves to dump its bad news on a Friday afternoon, and on October 2 it confirmed that 1 percent of American children (and by extension, perhaps 1-in-58 boys) has an autism spectrum disorder.

It is possible that Mr. Kirby didn’t know that the Pediatrics study was to be published on Monday. It is possible that he didn’t know about the second, embargoed conference call.

Possible, but very unlikely.

If he knew (and I believe he did), his introduction is highly irresponsible. It fans the flames of the idea that the government tries to bury autism information. No surprises there, as Mr. Kirby has made a career out of fanning those flames.

Mr. Kirby further fans the flames by indicating that the 2pm call was short:

There was no alarm, and little time for questions from the community that was invited to “visit.” After about 15 minutes, questioning was cut off, and the call abruptly ended. I tried three times to ask a question (via a telephone switching system) and so did many other people on the call, which lasted a total of 39 minutes.

As we now know, the government had to prepare for the 3pm call. Perhaps Mr. Kirby didn’t know about that call. Again, that seems highly unlikely.

Mr. Kirby complains of not being able to pose his question. You can go read it if you want, I am not copying it here. The question, in classic Kirby style, is really a lecture putting out the current talking points of the vaccines-cause-autism groups.

Dan Olmsted at the Age of Autism blog mentioned the conference call as well, but his post was brief and not filled with the leading comments Mr. Kirby chose.

Lisa Jo Rudy at autism.about.com read the Kirby and Olmsted pieces (she mentioned this in her piece) and decided to blog the story herself. Unfortunately, she was a bit confused by what was embargoed and what was not–she discussed the Pediatrics paper (which was embargoed). This was reported to the AAP, who contacted Ms. Rudy and Mr. Rudy pulled the piece. The AAP decided that the embargo breach wasn’t so big as to pull the embargo entirely. In other words, they went ahead and kept the rest of the press to the Monday morning embargo date.

On Sunday, 7 hours before the embargo was lifted, Mr. Kirby ran a copy of his Age of Autism blog piece on the Huffington post.

The Age of Autism blog is still trying to fan the flames, pushing the idea that the mainstream media doesn’t want to cover this story. Mark Blaxill posted a piece today, Autism News: Pathetic Non Coverage, discussing how his home-town newspaper (The Boston Globe) didn’t cover the story when the embargo lifted on Monday. He states that “In the meantime, on Tuesday the Globe posted a link to an abbreviated form of the Associated Press story. A day late and a dollar short.”

I don’t profess to know what methods Mr. Blaxill used when he couldn’t unearth the story on the globe.com webiste. I know that I used “autism” as the search term and quickly found this story, which came out Monday, October 5. There is also the abbreviated AP story that the Globe put out on Tuesday, which Mr. Blaxill references.

What can we say about the whole debacle? It is a big mess. It is a big mess that started when someone at the CDC told Lee Grossman of the Autsim Society of America some confidential information. That person at the CDC screwed up.

Isn’t that just a bit sad? Trusting a prominent representative of a major autism organization has been shown, in this case, to be a mistake.

I won’t say that Mr. Grossman made a mistake by talking to David Kirby. An error in judgment, yes. Mistake, no. Mr. Kirby’s track record of presenting any data in a very biased mode to promote vaccines-causing-autism is quite well established.

I didn’t see any mainstream press coverage that included any of Mr. Kirby’s talking points. He was able to get a prominent spot in the google news searches on autism with his Huffington Post piece.

The main fallout seems to be (a) the CDC will probably clamp down on giving out information and (b) the press has an impression that autism advocates are irresponsible with information.

11 Responses to “Autism rate of 1 percent, and the embargo that wasn’t”

  1. Visitor October 7, 2009 at 22:32 #

    You have to remember that David Kirby was writing gay holiday features before he was spoonfed the ludicrous drivel that he published in his book. He has shown himself to be quite without any ethical standards or professional disclipline. He’s a grubby opportunist, who would not only betray an embargo, but then make up a story to insinuate that it was imposed for some improper reason.

    • Sullivan October 8, 2009 at 01:23 #

      Visitor,

      I don’t care what sort of holiday features Mr. Kirby may have been writing.

  2. Joseph October 7, 2009 at 23:08 #

    The Age of Autism blog is still trying to fan the flames, pushing the idea that the mainstream media doesn’t want to cover this story. Mark Blaxill posted a piece today, Autism News: Pathetic Non Coverage, discussing how his home-town newspaper (The Boston Globe) didn’t cover the story when the embargo lifted on Monday.

    That is an incomprehensible point of view to me. The CDC survey stories are all over the place. Contrast this with coverage of the NHS adult prevalence study (the first of its kind ever) which was covered by a handful of news outlets, mostly in the UK.

  3. Socrates October 7, 2009 at 23:25 #

    And on the BBC, the prevalence rate played second fiddle to MMR-Autism de-bunking:Latest autism figures should dispel any fears about the MMR jab being linked to the condition, say experts.

    These are desperate times for the Militia.

  4. Alison Singer October 8, 2009 at 04:08 #

    I thought David Kirby considered himself press. He describes himself as an “independent journalist”. Why was he even on the call that was designated for advocates?

    • Sullivan October 8, 2009 at 05:34 #

      Alison Singer,

      Mr. Kirby seems to be a little inconsistent in what his role is. On the one hand, he has a past history in journalism. On the other hand, he goes to DC to brief legislators on behalf of advocacy groups.

      Alibris books has a signed copy of Evidence of Harm for sale. The inscription is listed as:

      “Thnak you so much / for your service to / the autism community. / Keep up the work! / David Kirby”

      I don’t know how an independent journalist could thank someone on behalf of the autism community.

      I don’t see how David Kirby can either, but that is another story entirely.

  5. Tina Cruz October 8, 2009 at 09:59 #

    On Sept. 26, I wrote an article as LA Special Needs Kids Examiner regarding the increase in autism 1 to 100. While I first read the information in Kirby’s article, quoting Grossman, I also read it at Adventures in Autism as well. I wanted to write a story about it, and therefore, needed to do the research to verify it.

    My search led me to the CDC website, where I found information that had been changed to read, “1 to 300 to 1 in 100 with an average of 1 in 150” quoted for rates of autism. Since I was very familiar with the old numbers, 1 in 150, I believed this was news. I also found a cached page that showed that the CDC had changed the numbers without informing the public, and I wrote an article about it. At that point, I was not aware of an embargo. I simply saw news that needed to be reported, and mainstream journalism had dropped the ball.

    I don’t know the motivation for the embargo, but it seems there was other, more important news on Friday afternoon that outlets believed needed to be covered. Since I cover only special needs, that was what I reported.

    Tina Cruz
    http://www.examiner.com/examiner/x-9121-LA-Special-Needs-Kids-Examiner~y2009m9d26-CDC-quietly-revises-autism-numbers-to-1-of-US-children

  6. bensmyson October 8, 2009 at 11:48 #

    So maybe I missed the point about the embargo, mainstream media is upset that a blogger “broke” the story to a couple of thousand people? Is that why nothing was really reported about it? Is mainstream media really upset? Seriously?

    Our local paper ran an AP wire story buried on page 4. Headline, “Parents report that one on 91 children have autism”

  7. Sullivan October 8, 2009 at 18:41 #

    bensmymom-

    the point is that whoever told Lee Grossman about these studies blew it. That’s why I started and ended the post with that information.

    Whoever did that broke the embargo. Personally, I think someone like Lee Grossman should be able to get advanced notice. Taking that information public, and especially giving it to a PR man with a history of misrepresenting facts (David Kirby) was poor judgment on the part of Lee Grossman.

    I see Lisa Jo as making a small mistake, caused by the confusing situation. I don’t really fault her.

  8. Ashley October 9, 2009 at 19:33 #

    Not sure if the embargo system is working because I don’t think any of the media coverage on this was very informative. See a recap of news coverage here: http://www.newsy.com/videos/autism_on_the_rise

Trackbacks/Pingbacks

  1. Tweets that mention Autism Blog - Autism rate of 1 percent, and the embargo that wasn’t « Left Brain/Right Brain -- Topsy.com - October 7, 2009

    […] This post was mentioned on Twitter by autism_hub and Autism Hub. Autism Hub said: New post: Autism rate of 1 percent, and the embargo that wasn’t: Autism rate of 1 percent, a.. http://bit.ly/15VPXQ […]

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