And, if so, is SafeMinds trying to play games with Google news to get their story on top?
What happens when you are the first to break a big news story, at least in terms of Google News? Well, quite often your story gets to be the top story.
On Wednesday, SafeMinds put a piece on the Age of Autism Blog CDC Study Expected to Announce 1 in 100 Autism Rate—A Startling 50% Jump in Just Two Years. Evidence Points to an Environmental Trigger. Then, on Thursday, basically the same piece reappeared as CDC Brings Bad Tidings: 40,000 Children Diagnosed With Autism In This Year Alone. They open with:
Atlanta, GA – A study to be released Friday by the Autism and Developmental Disabilities Monitoring (ADDM) Network of the Centers for Disease Control (CDC) is expected to report that autism prevalence has reached the epidemic rate of 1 in 100 children.
Usually when a new study comes out, journals or the CDC will release some information to the press on the condition that they respect the “embargo”. That is, everyone is supposed to wait until the same time before going public with the information.
There are advantages to not playing by the rules. When you get your story out first, especially on a big story, you can try to influence other stories and you can ride the top of the wave of press coverage.
Take a look at Google News for a big story and often there is a “lead” or top story. No one wants to be burried in the mass of stories. Get your story out first, and, hey, maybe you will be the top story.
That would be a big public relations coup for SafeMinds. At the same time, we have to ask: if SafeMinds is correct, are they breaking an embargo? The release of information about a recent Pediatrics study claiming a 1% autism prevalence caused some bad press for the autism community (also here and here).
Let’s watch. Will SafeMinds put out yet another post Friday morning, just in case? Will they succeed in getting a prominent spot for their pieces? Will journalists covering the story contact SafeMinds or use their material for stories?
The CDC autism prevalence estimates are made via MMWR’s (Morbidity and Mortality Weekly Reports). The previous report was from 2007, using data collected in 2002, with the 1 in 150 prevalence estimate that has been commonly quoted.
If you recall, the existence of the upcoming MMWR was leaked a few months ago. Lee Grossman, president of the Autism Society of America, somehow found out and talked publicly, and David Kirby blogged it. Of course, Mr. Kirby found a way (or was told a way) to include this as evidence of vaccines causing autism. The argument being that the Hepatitis B vaccine was given to those kids. It didn’t matter that the other dataset he was discussing in that same post, from the National Children’s Health Survey, didn’t support the idea at all. SafeMinds seems to be making the same arguments in their blog pieces as well.
If SafeMinds is correct and the announcement comes out Friday, expect updates on the CDC autism data page, and the CDC autism page. But, hey, expect about 5,000 news articles too.
Left Brain Right Brain 
‘Evidence points to an environmental trigger’
Yet how many children are properly assessed to see if their Autism could be caused by Lyme disease.
http://www.lymeinducedautism.com/
Robert Bransfield found about 30% of Autistic children had Lyme Disease so considering current testing is 50% likely to produce false negatives then the percentage could be much higher.
He and other doctors found that with appropriate treatment the autistic symptoms improved.
Also
http://www.huffingtonpost.com/david-kirby/is-autism-associated-with_b_316986.html
Interesting research by Whittmore Institute on XMRV retro virus neeeds further consideration.
You know what, someone in astronomy discovers a new exoplanet, it is happening all the time, I don’t know what the statistics are but I am willing to guess that there is a huge percentage growth in the incidence of exoplanets over the last decade.
Does that mean that they did not exist before?
Well maybe if one is a philosopher, but I think the general concensus is that more are being discovered, not created.
CDC statistics are still way behind the UK so we must be a nation of autistics now.
I wonder how things will change when DSM V comes in?
Statistics are just that, statistics, a representation of reality not reality itself, nor is Autism itself reality, it is a model of something that’s all, just like current astro physics, just a model under constant revision as new information and observations come to light.
Joanne, your comment would have more weight if you had provided some real evidence in the form of a paper title, journal, author and date that we could find in the PubMed. Just them saying so in a website is not sufficient (also, Kirby is not exactly a science writer, for more information search this website for opinion pieces about Kirby).
“Will they succeed in getting a prominent spot for their pieces? Will journalists covering the story contact SafeMinds or use their material for stories?”
Why yes they did! Fox News none the less. http://www.foxnews.com/story/0,2933,580574,00.html
Read more: https://leftbrainrightbrain.co.uk/?p=3841#ixzz0a5lLVbVy
“There are advantages to not playing by the rules. When you get your story out first, especially on a big story, you can try to influence other stories and you can ride the top of the wave of press coverage.”
Even CDC/HHS acknowledge that Age of Autism broke no rules as they did not have an advance of the study back in Oct. and I doubt they had an advance of the study this time.
Read more: https://leftbrainrightbrain.co.uk/?p=3841#ixzz0a5n5RUSh
Sorry – forgot the link http://www.healthjournalism.org/blog/2009/10/autism-news-raises-question-when-is-an-embargo-not-an-embargo/
“There are advantages to not playing by the rules. When you get your story out first, especially on a big story, you can try to influence other stories and you can ride the top of the wave of press coverage.”
Even CDC/HHS acknowledge that Age of Autism broke no rules as they did not have an advance of the study back in Oct. and I doubt they had an advance of the study this time.
Julie,
SafeMinds and AoA are playing a game. How close can they get to clearly breaking the rules without getting slapped.
The MMWR summary was embargoed until today at noon (eastern time). SafeMinds is playing with the question–is the existence of the MMRW embargoed, or just the content? They used previously leaked information (the 1% prevalence), rather than data from the summary itself.
They got into an NPR story as well. It’s cheap politics. The autism community suffers, but they gain.
Sullivan, how is it exactly that the autism community suffered from the fact that SafeMinds announced that a study was coming out that referenced a prevalence number that CDC and the National Institute of Mental Health made public months ago would? As I can tell there was nothing in their article that revealed any other detail from the study. Again, a detail made public in October?
Read more: https://leftbrainrightbrain.co.uk/?p=3841#ixzz0a6drcIf0
http://www.nimh.nih.gov/about/director/updates/2009/nimhs-response-to-new-autism-prevalence-estimate.shtml
CNN NEws – http://cnnwire.blogs.cnn.com/2009/10/05/study-1-percent-of-children-have-autism-or-related-disorders/
CBS News – http://www.cbsnews.com/stories/2009/10/05/ap/health/main5363008.shtml
Julie,
when the press starts to look at the Autism community as groups that don’t respect their profession, we all suffer. The autism communities depend on the goodwill of the public and the press. Disrespecting an embargo is not the way to keep the press on our side.
But, since SafeMinds is being sidelined, I guess they don’t care.
As to your links
1) Yes, I pointed out that SafeMinds was gaming the system. glad to do it.
your links from NIH, CNN and CBS all discuss a different study. Did you realize that? Those links from October discuss the study in Pediatrics using the National Children’s Health Survey data. The study released on Friday was a CDC publication, an MMWR, using different data.
Sullivan, they discuss a different study (HRSA phone survey) but CDC joined in the announcement of that study and announced at that time that they would be releasing a study at the end of the year. At that time they said both that the number would be 1 in 100 and they also stated a 1% rate. Did you actually read the artciles I attached?
This is obviously where SafeMind’s, AoA and the rest got their information…in addition to a call that CDC & HRSA held with the autism advocacy groups a few days prior to the release of that HRSA study. The link I added here explains all this, http://www.healthjournalism.or…..n-embargo/
CDC acknowledge, basically, that they had no problem with AoA reporting this back in Oct because they (CDC) had made the information about public knowledge in other venues as well.