July 15, 2007

Something Has Happened

Two weeks ago I took a break from blogging to spend time with family who came to visit. Last week was a work catch up week, and I have only begun to catch up with all that has happened in the autism world while I was gone.

As I have been reading, I am seeing things that are surprising me. It is freaking me out a little.

Something has changed around the Cedillo Trial.

I have been following autism news for three years and I have never seen the kind of stories/events that are surfacing.

Dave Weldon and Carolyn Maloney have introduced bipartisan legislation, the Mercury Free Vaccines Act of 2007. Autism Speaks has uncharacteristically decided to back it and oppose AB 16 in Sacramento that would mandate that the State of California automatically adopt any vaccine that the CDC puts on the schedule (and pushed the HPV vaccine). They have never taken a stance on vaccines before. AS is also listing mercury research that was funded by CAN before the merger on their web site, but someone who spends a lot of time on the site said they didn't remember every seeing this page there before. (Anyone know if this is new, or remember seeing it in the past?)

AS has also stepped into the insurance coverage legislation in PA and announced legislative efforts on their web site.

The CDC issued a response to Verstraeten/VSD on their web site with lots of references to thimerosal studies. (I haven't had a chance to read it yet), but how long has it been there? It is not dated and David Kirby, who is a guy who keeps track of these things, didn't even know it was there until a few days ago.

The run up to the Wakefield MMR Trial has reignited doubt in the vaccine in the UK and articles like these are coming out:

At Last They Admit It, This Jab CAN Harm Your Child

The Truth About MMR


The Autism Research Institute is now being backed by the giant Autism Society of America, which is now teaming up with Easter Seals who will now make Autism their priority.

Over the last three years, my blog has been visited occasionally by CDC and NIH and a few other government agencies. These visits were few and far between, and always interesting to me when they happened. But now, ramping up with increasing frequency since about April, my blog has been regularly visited by The Powers that Be CDC, NIH, FDA, EPA, HHS, the House and the Senate, The Department of Justice (who are the governments "defendants" in the Cedillo Trial), The Department of Veterans Affairs, The US Forestry Service, The Naval Research Laboratory, Lawrence Livermore Laboratory, The US Census Bureau, dozens of foreign, state and local governments, a slew of Canadian government agencies, dozens of medical centers/health organizations/universities/dental schools including CHOP (Paul Offit's hospital), Johns Hopkins, The Cleavland Clinic, our pharma friends at Johnson & Johnson and Glaxo Smith Klein, Immunize.org, media corporations Tribune and Gannett, The World Health Organization and even one visit from the Nuclear Regulatory Commission

Apparently the Department of Justice is curious to know when and if the Evidence of Harm movie will be coming out.

Here is my blog traffic graph for the last three years.

2005 - nice little blog with decent traffic. 2006 - took a break from blogging for most of the year. 2007 - Started to write again. Feb/March stats broke but I didn't notice. April was Autism Awareness Month (Damn that is a lot of awareness). May - residual autism awareness?? June - suddenly I am twice as fascinating as I have ever been on my best month! July - on track to have 8,000 visitors despite the fact that I have been on vacation most of the time.

As much as I would love to believe that it is my brilliance that people are coming for, it is probably a safer bet that more people (and more people in positions of power to do something) are awakening to the reality that autism is preventable and treatable and are taking valuable time out of their day to investigate for themselves.

Last month I said that the tide had turned. I think I might have been righter than I thought I was and that the tide might start moving faster than I had anticipated.

Even if I had 40 hours a week to sort all this stuff out, I don't think I could do a decent job. I am just going to start posting references to stories with out much comment just so I can get as much out as possible.


rpnorton said...

Hi Ginger -
I think the reason your blog traffic spiked in June are your posts relating to Autism Speaks and the fact that Autism Speaks v. Katie Wright has been a big topic of late. Let's take me as an example: I discovered your blog back in 2005 and (no offense) didn't visit much until last month, when I discovered that a lot of people in the community (including Katie Wright) were angry at Autism Speaks. I read the NYT article and did some Google work and found your blog again. Based on my experience, I have to think at least some of your spike in traffic was due to the very negative posts you made on Autism Speaks.

Finally, I have been involved in Autism Speaks' advocacy efforts against AB 16, and I must say that it is a big tent. Some people at Autism Speaks are proponents of the vaccines-cause-autism position and others are not. But the advocacy committee that drafted the Autism Speaks AB 16 oppose position believes fervently that this is a parent choice issue - NOT a vaccine issue - and that was the basis of the Autism Speaks OPPOSE position on AB 16, because the bill removes some strong parent choice protections regarding vaccination and substitutes much weaker ones.

So, when I read this post, I am not disputing your facts but I think your analysis of them is incorrect.

Ginger Taylor said...


You are partially right about the Autism Speaks posts, I had really high traffic around there, but that does not explain it all.

There were people coming who had put Katie Wright into a google search and found my site, but also a lot of people coming from some variation of "Cedillo Vaccine Omnibus Trial Hearings".

There were people going straight into AS posts, but also people going into my posts on Thimerosal and the hearings.

I wish I would have paid closer attention or saved the ranking of search words at the time. It only goes back a week on my stats. Right now I am getting a lot of hits off of people searching on Jenny McCarthy, Katie's name is getting some, and Autism Speaks doesn't appear until number 90 in search terms, with only two people searching "Katie Wright Autism Speaks".

But also... the Katie Wright story is part of the vaccine story. She parted with them because they are not putting money into the treatments that are improving her son's health (IMHO because each time those treatments are verified to work, another nail goes in the thimerosal coffin). So to consider them two completely different phenomena does not seem right either.

It is all part of the same gestalt if you will. The Wrights story, and the fact that their daughter parted with the group that was founded to presumably help her son would seem to make people want to know why would someone do that? What treatments are so important to her that she would be in a public row with her own parents, whom she is very close to, and why are those treatments so important?

Traffic was high before the AS posting, but you are right, the two highest days last month were the Monday and Tues after the NYT article. (But the DOJ visits started about a week before the trial and were pretty consistently every day and sometimes several times a day. Their interest was no so much in AS posts.)

That is kinda why the post is entitled "Something Has Happened" and not "This is what has happened". There are probably a hundred thousand reasons that things are changing and I can only guess at the major reasons.

As for AS lobbying efforts. Yay!

This is what they should be doing, and a LOT more of it.

AB 16 is a parents choice issue, but AS has never done anything that would seem to upset the gods of pharma who are supporting them. These two measures are potentially upsetting to them.

This is great news and I really, really hope that they will start making more and more decisions based on what is best for families and individuals with autism, rather than on the politics of how to stay in with those hostile to vaccine theory.

I know you feel that AS is a big tent, and this could be a sign that they might be trying to get big enough to include people like me, but I am still outside.

I have a few more good stories about AS to write this week, but also a few not so good.

If you are involved with them, I encourage you to ask lots of questions and get answers and promote openness and even more big tentery. As I told John Shestack, I want Autism Speaks to succeed. I hope they make a fool out of me and announce that they have found the cure for autism tomorrow.

I would loudly and publicly write them checks and encourage everyone else to do the same.

But for now, their research funding does not give one the feeling that they are following the trail wherever it leads as the major interventions that parents are reporting successes with are almost completely left off the funding list.

Thanks for the observation and for contributing. I like thoughtful commenters who challenge me.

My husband however would prefer that I stop writing now and get stuff done.

So bye for now.