Comments on: Is CDC to announce 1 in 100 autism rate?

By: Julie

Julie — Sun, 20 Dec 2009 02:02:30 +0000

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.

By: Sullivan

Sullivan — Sat, 19 Dec 2009 07:15:56 +0000

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.

By: Julie

Julie — Sat, 19 Dec 2009 04:38:42 +0000

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?

http://www.nimh.nih.gov/about/.....mate.shtml

CNN NEws – http://cnnwire.blogs.cnn.com/2.....disorders/

CBS News – http://www.cbsnews.com/stories.....3008.shtml

By: Sullivan

Sullivan — Sat, 19 Dec 2009 01:32:43 +0000

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.

By: Julie

Julie — Sat, 19 Dec 2009 01:14:30 +0000

Sorry – forgot the link http://www.healthjournalism.or.....n-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.

By: Julie

Julie — Sat, 19 Dec 2009 01:09:29 +0000

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.

By: Julie

Julie — Sat, 19 Dec 2009 01:03:47 +0000

“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

By: CDC: Nearly 1 percent of U.S. kids have autism : Covering Health

CDC: Nearly 1 percent of U.S. kids have autism : Covering Health — Fri, 18 Dec 2009 17:40:12 +0000

[...] Interestingly, the Age of Autism blog reported the news from this study as early as Wednesday, despite the CDC’s embargo that didn’t lift until noon Eastern time on Friday, bringing to mind earlier questions about embargoes. More about that here. [...]

By: Chris

Chris — Fri, 18 Dec 2009 17:02:12 +0000

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).

By: Laurentius Rex

Laurentius Rex — Fri, 18 Dec 2009 12:42:38 +0000

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.