Champagne Wishes and IEP Dreams
Olmsted on Autism: The China Syndrome

IOM and a Three Letter Word

Kelli_ann_davisBy Kelli Ann Davis

"But" 

At first glance, not really an impressive word and definitely not one I thought much about…at least, not in my spare time - and as a mother of a child with autism, I can tell you “spare” as in money, time, hands, is not a reality in my neck of the woods - not, that is, until I realized just how much of a wallop this tiny, 3 letter word had when placed strategically within the confines of a news story.

And that "eureka" moment - the one where my spare time became consumed by that pesky, 3 letter word - occurred about two years ago…shortly after the Institute of Medicine (IOM) – IOM, another 3 letter word that used up my spare time - released its official "findings" in regards to the possible link between autism and vaccines.

You all know what I'm talking about….the oft quoted "2004 Report" which is most typically surrounded by words like: prestigious, conclusive, exhaustive….

Yeah, that one.

Anyway, I started to notice a strange thing over the weeks that followed the release of that report…that 3 letter word – the first one - would rear its ugly head in almost every story I read with such precision in placement I could almost swear it was the same author writing under a pseudonym.

I'd read the story of a family as they described their daily struggles in dealing with their child's autism.  You could feel their heartache….relate to their pain…and I could almost hear Average Joe start to think, "Could it possibly be true what they are saying regarding vaccines?"  And then WHAM!  There it was.  Like a neon light in all its glory - the dreaded and strategically placed "but."

"Little Suzie's family thinks that vaccines could be the cause of her autism but the scientific - forgot that one - evidence and final 2004 report issued by the prestigious IOM has shown conclusively – sometimes they lump a whole lot of the adjectives together -   that there is no relationship between vaccines and autism."

But: the great nullifier.  Somehow, it manages to discredit, erase, obliterate, smear, call into question, cancel anything that precedes it. 

Consider the following: “Honey that dress looks great on you but…” and as we both know it doesn’t matter what you say after that point. Your fate is sealed and you’re sleeping with Fido.   

And it was after reading a bazillion stories - much like the one about Suzie and Billy -  that I decided I was a woman on a mission – “your mission if you decide to take it…. take the "umph" out of that 3 letter word” - and so I took it – and no, the tape didn’t self-destruct but I almost did.

Now, mind you, it took nearly two years - hence, the close call with self-destruction - but with the help of two of my best buddies - Mark Blaxill and Jim Moody - two of the coolest guys on the planet - nearly a dozen meetings with the Secretary's Science Advisor - another nice guy - and a private meeting with the President of the Institute of Medicine - and yes, he's a nice guy too - no hate mail or darts aimed at my pic please - the IOM decided to host an Environmental Workshop where words such as vaccine, autism and mercury were allowed to be spoken – you know, like all at the same time -  and with a whole slew of government officials and science folks joining in!

And so, it had to happen.  And it did.  I marked the day…May 28th, 2007.

The 3 letter word in yet another media story. But this time it was different:

"In April, the government-funded Institute of Medicine held a two-day workshop to discuss ways to research possible toxic causes of autism.

A study by the Institute of Medicine concluded in 2004 that there was no compelling evidence to link mercury-containing vaccines to the rising rates of autism, but researchers agreed at the conference last month that the government should focus more on examining a broad array of potential environmental factors that could contribute to autism, especially in people with a genetic predisposition."

Mission accomplished.


Kelli Ann Davis lives in Washington, DC and advocates on a national level for her son Miles, 15.  She also has a daughter Janna, 9. 

Comments

Mark Blaxill

hi Kelli,
One thing I think is remarkable is the contrast between the way the press covers the environmental issues in autism and the spin they place on "the scientific consensus" and the kinds of conversations we have when rational people get together in a room to discuss facts and evidence. Invariably, the people who are inclined to view some of us quite negatively come away with a different impression. I was most encouraged by the comments of Alan Leschner who seemed to get more enthusiastic about the workshop by the hour. By the end, he was declaring the workshop to be a model of community/science interaction. I think he was right.

The issue of course is whether anything changes. I am hopeful that it will but concerned that it might not. We need major changes in funding priorities and attitudes. Let's hope we made some progress in the right direction in the workshop.

Kelli Ann Davis

JB,

Well, that's certainly a compliment coming from you....after all, you are, what I consider, the "King of Ruckus" :-)

And of course, you bring up a good point and one worth discussing: I think that our community SHOULD bring up the fact that the IOM HOSTED this event every chance we get.

When parents, etc. are talking to reporters or writing letters to the editors, they need to specifically point this out.

For example, I wrote the following letter to the Editor of the Washington Post recently after they ran another "Suzie and Billy" story and made reference to the IOM and their 2004 Report -

To the Editor:

You state: "To date, no major studies have shown any connection between vaccines and autism, and the Institute of Medicine has rejected any causal relationship."

To date, NO study has shown that injecting mercury, A KNOWN NEUROTOXIN, into an individual is SAFE...AT ANY LEVEL.

And so it is entirely LOGICAL that parents would associate their children's neurological injuries to the FACT that a known neurotoxin was injected into their bodies.

Furthermore, the "rejection of a casual relationship" by the Institute of Medicine (IOM) was issued in 2004.

In April of THIS year, the IOM hosted a two-day Workshop on Autism and the Environment and discussions included any potential environmental triggers that could be a contributor to autism. Needless to say, mercury was a top contender.

I'm thankful that there are government officials, researchers and medical professionals who are willing to consider all potential "triggers" in an effort to help our children in regards to treatments and research...no matter where the Truth may lead.

It's too bad that as an Editor of a major publication you're willing to "close the door" even before the case has been heard.

So much for the pursuit of Truth.

Kelli Ann Davis

JB Handley

Kelli:

It's a remarkable acheivement that the workshop was held. Of course, we never hear about it in the press.

JB

Kelli Ann Davis

Hi Kim.

The IOM is currently in the process of readying the “Report” which will be issued sometime this fall. It will basically detail what “transpired” during the two day event.

We’ve been in discussions with the IOM since the conclusion of the Workshop (in regards to this Report) and we’ve been told that the Report will change from a “Summary” Report to a “Proceedings” Report. According to the IOM, the Proceedings Report “is a publication” which is “simply, in effect, a transcript”.

In my opinion, this is much better than a Summary Report (which is written by Rapporteurs -- individuals who study the transcripts and “summarize” the event in a Summary Report) because it is a more accurate portrayal of the proceedings and isn’t based on an individual’s personal bias.

In addition, the IOM has assured us that Members of the Planning Committee (Mark Blaxill of Safeminds and Laura Bono of Safeminds/NAA ) will receive “a copy of the proceedings to read and comment on".
Furthermore, and "in accordance with standard review procedures for Workshop proceedings, we will also send the relevant sections of the transcript/text to the invited speakers to ensure that we have captured their presentations accurately.” Lyn Redwood and Sallie Bernard (both members of Safeminds) were two of the "speakers" at the event and they will also have input into this process.

I think it’s important for members of our community to remember that this Workshop was a HUGE step forward – the fact that vaccines and mercury were legitimate and welcomed topics for discussion in an event HOSTED by the IOM is indicative of a shift in how this issue is being viewed within the scientific community!

My special thanks go to Dr. Raub – Secretary Leavitt’s Science Advisor. If it wasn’t for his genuine “openness” to our issue, this Workshop would have never occurred. (Listen to his remarks in the “Audio: Welcome”).

Kelli

PS....The audio transcripts are available on the IOM website for individuals to access now.

Stagmom

Kelli Ann, what's the timeline for their work?? Any idea??

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