Sunday, June 04, 2006

ROLLING SNOWBALLS WITH FRIENDS


An early surprise at Autism One last week came courtesy of our Virginia friend, Mary. She has apparently decided this blog needs a good publicist, and Mary came to the conference armed with stickers and postcards bearing a new Injecting Sense logo (see above). There’s no reason to worry about such efforts going to my head. The one person who would not wear one of the stickers was my lovely wife.

It would take too long to give a lot of detail about what I heard from various speakers, and it would be impossible to relate everything that went on because there were five separate tracks being conducted simultaneously. I encourage anyone who has an interest in what was said to order individual presentations; some are available on DVD (the videos from the 2006 conference should be available soon) with all of the sessions being available on audio CD or MP3.

What I can do is give you some impressions I came away with. Keep in mind that the following is not intended to be a transcript. Again, the presentations are available. Also, there are a lot of fine presentations I saw that won’t get mentioned because the details would get lost in any retelling. What really interested me is the move toward common ground.

Mark Blaxil called science a “subversive process,” because the whole point is to take what went before and prove it wrong. Or, in the words of the ancient Greek, Thales, as quoted by Mr. Blaxil, “to bring surety is to bring ruin.” Rigor and scrutiny need to be applied to all science, but one must realize that our understanding of an issue can never be complete.

In her presentation devoted to explaining her proposed model for understanding autism, Dr. Martha Herbert echoed the resistance to change many scientists have. She asked the rhetorical question of should we believe what we see, or do we see what we believe? Those who cling to outmoded models will not see or believe the very real discoveries that are being made.

We are in the midst of a dynamic scientific process, in which we are learning more every day. And with each new discovery, we get closer to the truth.

Indeed, as Dr. Elizabeth Mumper stated, we’re now seeing an “integration of hypotheses.” More and more speakers were talking about the combined impact of various environmental insults, including mercury as a primary but not the only culrit, as causative factors for autism.

There seems to be no question ⎯ at least among the physicians and researchers who spoke at Autism One ⎯ that most autism results from a combination of genes and environment. Dr. Manuel Casanova, a neuropathologist, debunked the notion that the different brain structure we see in autistics (i.e., increased number of Purkinje cells and narrower minicolumns) appears to result from environmentally influenced genetics. As Dr. Anju Usman stated, genes cannot be altered, but the manner in which they are expressed is subject to change.

Dr. Usman spoke of having to take a complete look at the clinical picture of each child. Specifically, many children have not just mercury toxicity, but lead toxicity as well, and the synergy between mercury and lead gives rise to an exponential increase in the hazard. Even so, for children with impaired immune systems, heavy metals are just “the tip of the inceberg.”

Also looking beyond a simple indictment of thimerosal was Dan Olmsted, who gave a presentation together with David Kirby. Mr. Olmsted, the UPI editor who has given us the outstanding “Age of Autism” series, doesn’t attempt to answer any questions about causation. Instead, he does exactly what a good journalist always does; he asks intriguing questions. By looking at common environmental exposures in the earliest reported cases of autism, and recent diagnoses of autism among children involved in vaccine trials, Mr. Olmsted presents questions that may help lead us to the right answers.

Dr. Andrew Wakefield, the most controversial of all the key players in the autism world, gave a very interesting talk partially about studies that seem to replicate his controversial paper of several years ago linking the MMR vaccination and autism. He went beyond that issue, however, and speculated aloud about whether, though our vaccine programs, may have altered for the worse the means by which measles is transmitted. Again, this was not presented so much as a scientific study as it was what I would call preliminary speculation, but it is an idea worthy of exploration. For anyone who wants to criticize this notion without bothering to know what they’re criticizing, I would urge such a person to order the DVD or audio CD of this lecture. (Actually, Lisa Ackerman’s introduction of Dr. Wakefield, by itself, is probably worth the price of the DVD.)

On a policy note, Rick Rollens addressed the California numbers and, more importantly, the California response to those numbers. The California DSS numbers are undeniably controversial and subject to various interpretations. But a sensible look at them indicates that something is indeed going on, and Californians should be grateful that people like Mr. Rollens are there to see that society doesn’t simply bury its collective head in the sand.

It is an unfortunate fact of our life that the scientific and health-policy issues that concern us most are intertwined with politics. The keynote presentation, given by Robert Krakow, Jim Moody, and John Gilmore, entitled “A New Revolution ⎯ Empowering Parents,” focused on political action. And there is certainly much going on in that area. More and more parents are coming to the conclusion that good science and good heath policy will be buried unless we unite as a political force. Many states have either passed, or are considering legislation to ban thimerosal from vaccines or to expand health insurance benefits for autism. The Combating Autism Act is now working its way through Congress. To be sure, it is an imperfect piece of legislation. Nearly everyone can find problems with it, but the process by which it has come together is indeed encouraging. The various educational and advocacy groups have come together to compromise in order to move forward.

On both the scientific and political fronts, we are moving toward common ground. Listening to the presentations at Autism One, I thought about the image (undoubtedly the result of watching too many cartoons as a child) of a snowball rolling downhill. At first, there is just a tiny bit of snow rolling at a slow rate of speed, but more and more snow is added as the ball rolls downhill. As it picks up more speed and momentum, the ball continues to grow at a quicker pace with each roll.

One reason the snowballs are picking up speed and snow is that there are so many good people giving them a little push on the journey. I got to spend some great moments with many of them. Getting to know Scott and Angela Shoemaker better was a genuine treat. Speaking of treats, I will never forget seeing the glee in the Little Rankster’s face as the Nanstiels serenaded him with the “Spongebob Squarepants” theme. I had the pleasure of meeting countless people ⎯ too many to name here ⎯ I’ve gotten to know either through this blog or the EoH list. I had the chance to chat with Dan Olmsted and Craig Westover, two fine writers who have nothing to gain by taking a serious look at what we’re saying, and yet they’re interested in seeking the truth. A continuing resolve to seek the truth was expressed to me by Lujene Clark, who has no intention of backing away from the important work she began with her late husband, Alan.

I experienced a moment of great (almost sinful) pride upon hearing Bob Krakow echo my thoughts about the political struggle involved in finding the truth: that there’s a lot of us out here, we’re everywhere, and “we’re not going away any time soon!”

We’re not going away until we find the truth that shall free our children of the obstacles caused by autism. We’re not going away until we find out why our leaders decided it was a good idea to inject poison into our children. There is much that still divides us, but we’re not going away until we reach a consensus.

19 Comments:

Anonymous Anonymous said...

It seems to be the same conference year after year. Same speakers, same information. I'm really beginning to question these people.
Some of them seem like scam artists.

6/4/06, 1:43 PM  
Blogger María Luján said...

Hi Wade
Thank you very much for your comment.
I think that the main point of a change of paradigm in science is fundamental and parents have an enormous importance, around the world, to be the best advocates our children deserve, in many areas. Since the asking for the respect and consideration our autistic children deserve up to the appropiate medical treatment ( trustable and based on high quality science) our children also deserve.
Glad to hear about your experience.
María Luján

6/4/06, 1:45 PM  
Anonymous Anonymous said...

"At first, there is just a tiny bit of snow rolling at a slow rate of speed, but more and more snow is added as the ball rolls downhill. As it picks up more speed and momentum, the ball continues to grow at a quicker pace with each roll."

Interesting analogy. Snow at higher elevations and lower temperatures is not the best choice for snowballs (let alone rolling snowballs), it's the warmer slushy stuff at lower elevations and warmer temperatures that's sticky and can make the best snowballs - while great for the process of forming a snowball, it's essentially on it's way to melting and doesn't last.

6/4/06, 2:42 PM  
Anonymous Anonymous said...

And of course they have speakers like Christina Adams who wrote a book (not a very good one)about curing her child. Another Catherine Maurice. Just in it to make money if you ask me.

6/4/06, 2:57 PM  
Blogger Kristina Chew said...

So are you going to use the new graphic on your blog.......Thanks for your, as always, thoughtful commentary and for noting all the questions raised. I hope the next year will see more good and spirited discussion.

When will you be presenting at a future conference?

6/4/06, 7:32 PM  
Blogger Mom to Mr. Handsome said...

Always informative. Thanks Wade for keeping me up to date on another perspective about the possible causes of Autism.

Kristin

6/4/06, 8:55 PM  
Blogger A.V. Michaels said...

Hey, found your blog, I just wrote in an article about autism and mercury, and was pleased to find so much out there about it. Thanks for your work.

6/5/06, 4:25 AM  
Anonymous Anonymous said...

Hi Wade!

It was nice meeting you at the A1 conference! FAIR will be posting a lot of great interviews we did at A1... including Bob Krakow, Martha Herbert, Jim Adams...and many others! Stay tuned!

Erik Nanstiel
FAIR Autism Media

6/5/06, 8:28 AM  
Blogger Brett said...

Wade,

Thanks for the quick summary, I'm sure we'll be hearing more about it in the future (I'm looking forward to it). And thanks for pointing out the availability of CDs/mp3's, the track on Adolescence and Adulthood looks especially interesting to me.

It's unfortunate that the people with negative comments to this post chose to hide behind anonymity, especially considering they had no comments on the substance of your post but rather simply attacked the concept of the discussion in general. Kind of hard to have a meaningful discussion when that is how they approach it. (Of course, I doubt those particular people have any interest in a meaningful discussion.)

Brett

p.s. I like the logo.

6/5/06, 8:42 AM  
Anonymous Sue M. said...

Anonymous wrote:

"It seems to be the same conference year after year. Same speakers, same information. I'm really beginning to question these people. Some of them seem like scam artists".

- Interesting commentary, anon. I think that you might be confused. It seems to me that the only group of people coming up with new scientific information and new studies are from the biomedical side of things. You may want to check into that.

Wade, thanks for the update. Just a little story... over the weekend my parents were watching the kids for a few hours. My little guy (2 1/2) kept saying "bumbob" to my mom over and over again. He was getting so frustrated because she wasn't understanding him. "Bumbob", nana, "bumbob". On and on and on. After a while my mom went outside to get a translation from my middle son. He wants his "spongebob" toy, Nana. Yes, my 2 1/2 year old is obsessed with Spongebob... what can say, he has two older siblings....

6/5/06, 8:55 AM  
Anonymous Anonymous said...

Sue m.:

Looking at the list, it is the same speakers year after year. And I really don't hear anything that is new that they haven't already covered. Open your ears.

6/6/06, 10:50 AM  
Blogger Wade Rankin said...

Sue,

I enjoyed the "bumbob" anecdote. In reading a lot of autism blogs, I can't help noticing that two of the favorite perserverations out there are Spongebob and shopping at Target. I'm not sure what that means, but it seems we spend a lot of time buying Spongebob toys at Target.


"Anonymous,"

If you look at the complete slate of speakers, you will indeed see some familiar names, but you'll see a lot of new ones as well. As for saying the same old thing, you obviously were not at Autism One this year, and my guess is that you were not there in any previous year it has been held. It doesn't seem that you even bothered to read the post before you left a comment, but that's kind of what I have come to expect. Open your mind.

6/6/06, 11:43 AM  
Anonymous Anonymous said...

Trust me, I read the post and did attend.

6/6/06, 12:09 PM  
Blogger Wade Rankin said...

Okay Anonymous,

I'll take your word for it. You were there. I can't help but note that of the 22 speakers in the main "track," from last year, I count only seven that were presenters this year. Of those seven, four seemed to cover the same subject matter.

I am interested in knowing if you thought the presentations were too timid or too radical. If the latter, meaning you think the whole biomedical approach is a lot of hooey and all you hear is the same-old stuff, why bother traveling a thousand miles and incur all the expense of attending a conference you really have no interest in? Frankly, I didn't agree with everything I saw and heard, but I saw a value to the conversation, and I certainly saw a pattern in the discussions that the issues and inquiries are broadening.

But I guess it's like Dr. Herbert (you know, one of the presenters who was not there last year) said: do you believe what you see or do you see what you believe?

6/6/06, 1:57 PM  
Anonymous Anonymous said...

I do believe in a lot of the biomedical and I have used many of the approaches and even have a great DAN doctor. I am just saying that I think some of the speakers seem to be more interested in "selling themselves and their recovery stories" rather than helping the child who remains autistic. That's all.

6/6/06, 2:38 PM  
Anonymous Sue M. said...

anonymous wrote:

"Open your ears".

- How exactly does one do that? Do I pull my earlobes down?

Anonymous, where will you be giving your critique of the speakers that you saw at Autism One? I would be interested in hearing your views about what was said.

6/6/06, 2:39 PM  
Blogger Wade Rankin said...

Anonymous: I am just saying that I think some of the speakers seem to be more interested in "selling themselves and their recovery stories" rather than helping the child who remains autistic.

Thanks for clearing that up. Although we might disagree on particular speakers, I can agree that some of what we see at these conferences can be labeled "self-promotion." I really don't have that impression about any of the speakers I mentioned in my post.

You have my apologies for reacting to your comment based on a misunderstanding. That being said, I still believe we heard about a lot of new developments, new understandings, and new attitudes.

6/6/06, 5:24 PM  
Anonymous love the fanboy said...

Maybe anonymous who was there can tell us about how Martha Herbert shut down Dr. Geier when he was pushing Lupron as being free from side-effects. Ricci on the ambd board and others were saying that there was plenty of talk going around among the parents she spoke with about what a quack Buttar is and what a generally lousy conference it was with lots of lousy speakers and few good ones. Ricci also panned the conference site and said that if was held there again Autism One deserved to "die," her words.

Ricci used to be a big poster to EoHarm group, too. She's the one who outed Bradstreet as pulling a bait and switch with secretin and for pushing exorcism. Gotta love an honest person like that. Ricci, I mean.

6/13/06, 6:47 PM  
Blogger Joseph said...

FYI, I've posted a comment about the paragraph about California here.

6/26/06, 8:07 AM  

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