TIME TO CHANGE THE CALENDAR AGAIN

One year ago today, I posted this description of how I would spend my New Years Day:

. . . I’ll be in the kitchen stirring the pot of black-eyed peas that comprise the heart of the traditional New Year’s Day dinner for many families in the South. While cooking, I’ll be formulating several resolutions for the coming year, intending to become a better father, a better husband, a better brother . . . a better this, and a better that. My resolutions are much like the New Year’s Day meal itself. We eat black-eyed peas because they’re supposed to bring good luck, and cabbage because it is supposed to bring wealth. It is highly debatable whether I have seen enough good luck or wealth to make even a coincidental connection to the meal, but I love tradition without regard for outcome.

That many, if not most, of my resolutions will be broken in a relatively short time does not necessarily imply a lack of dedication to being better. The simple truth is, resolutions are based on the world we faced in the last year. Each new year brings challenges that we simply cannot visualize in advance. All we can really do is hold onto core principles and make our way as best we can.

Although we have moved from our native South, my tradition shall remain the same. I’ll be stirring the peas and making resolutions. And among my resolutions this year will be to blog a little more regularly than I have done in the last few months.

Happy New Year!

A SEASON OF JOY, HOPE AND TRANSFORMATION

. . . and it was always said of him, that he knew how to keep Christmas well, if any man alive possessed the knowledge. May that be truly said of us, and all of us! And so, as Tiny Tim observed, God bless Us, Every One!

Charles Dickens, A Christmas Carol

I’ve always loved Dickens’ classic about Scrooge. It speaks of what I yearn for most at Christmas: transformation. Maybe it’s because Christmas comes so close to the date on which we change our calendars over, or maybe because the underlying story of Christmas is the transformation of mankind through something so simple and natural as the birth of a child. Whatever the reason, I always look for a big transformation in my life at this time of the year.

Yes, I know transformation has to start within. That’s why we make New Year’s resolutions. But it’s only natural to look for Christmas miracles.

My expectations for transformation are so high, and are never realized ⎯ at least not in ways I initially thought. I’ve come to realize that I need to not look just for a transformation yet to come, but also to notice the transformations that have occurred in my life without appreciation on my part.

My son’s autism has transformed my life . . . for better and worse. Do I wish it never happened? That’s a fair statement. Is it something I want to change? Absolutely. And yet it has led me to wonderful places. I’ve written before of how having a child on the spectrum has made me a better parent to all my children. And it has introduced me to wonderful people I have so little in common with except the fact that our children have ASD.

Transformation is a gradual process, and sometimes requires the ability to reflect. For example, several months ago I spoke favorably of the short video “Autism Every Day,” produced by Autism Speaks. I was almost relieved to see a stark depiction of the problems some of us face, mainly because it came at a time when we were bombarded with media stories that seemed to imply that autism was basically a pretty cool thing to have in one’s life. (Hey kids, it’s fun; you can play piano sonatas, shoot three-pointers, and you’ll be ever so smart.)

Although I initially agreed to an extent with many of the criticisms leveled at the video, I thought it was a worthwhile undertaking. With the benefit of hindsight, I’ve changed my opinion; the flaws in the video are big enough to keep it from being a positive contribution to “autism awareness.” Specifically, the video lacks two important elements: joy and hope. No joy is expressed for the lives of our children, autism and all. And there is no hope expressed that we can improve the lives of our children. Without joy and hope, any “awareness” is empty.

Joy and hope are essential to the lives of everyone, including “curebies.” Hope and joy fuel transformation.

My wish for you and your family is that you have a blessed Christmas and a transforming New Year. I hope 2007 will be filled with enough joy to recognize the miracles around us, even as we hope for miracles yet to come.

And so, as Tiny Tim observed, God bless Us, Every One!

THE PEOPLE’S HOUSE

A friend emailed me this evening to ask what I thought about Joe Barton’s floor colloquy in support of the Combating Autism Act. For those who missed it, Rep. Barton, reportedly having stripped the bill of any real mandate for environmental research, paid the necessary lip service to the vaccine issue:

Examining the published studies, the non-partisan Institute of Medicine has concluded that the weight of the available evidence favors rejection of a causal relationship between vaccines and autism. However, I recognize that there is much that we do not know about the biological pathways and origins of this disorder, and that further investigation into all possible causes of autism is needed.

Mr. Barton then went on at great length about his pet project of removing oversight for the NIH. My take on it all is this. Like its Senate counterpart by Sen. Enzi, Barton’s colloquy was carefully crafted to give cover to those who were willing to support any bill. While some may argue that he said vaccines can be examined, the bill says virtually nothing about any environmental causes. And placed in the context of Barton’s strong language favoring NIH independence, what he’s really saying is the NIH can study the vaccine connection if they want to . . . and we all know just how much they want to.

Apparently Mr. Barton and the House leadership learned one lesson from the Senate. As you may recall, Sen. Dodd was allowed to make a mild counterpoint to the Sen. Enzi’s colloquy, which some hoped would keep the vaccine/thimerosal issue alive politically. The House wanted none of that. My understanding from some web reports is that Rep. Dan Burton was not allowed to speak in favor of the bill. That’s right; I said a supporter of the bill was not allowed to speak even though there was time left for further comment.

But the statement he prepared to give has been posted here. After praising the bill as a step forward, Rep. Burton had this to say:

Even so, while a needed step forward, this is not a perfect bill, because I believe we are missing a crucial opportunity to use this bill to help unravel the mystery of autism. Specifically, while the bill before us does include language on the need to research the environmental factors which may contribute to autism, it does not include a specific mandate that environmental research topics must include vaccines, other biologics, and their preservatives. Now I am not against vaccinations, but I do believe, as do many of my colleagues that there is a strong link between the mercury contained in a product called thimerosal commonly used as a vaccine preservative and children developing neurological disorders such as autism. In fact, my own grandson became autistic after receiving 9 shots in one day, 7 of which contained thimerosal.

Because of what happened to my grandson I took it upon myself to learn about autism and what I discovered during my research was deeply disturbing. During my tenure as Chairman of Government Reform Committee (1997-2002), and as Chairman of the Subcommittee on Human Rights & Wellness (2003-2005), a number of very credible national and international scientists testified at a series of hearings that the mercury in vaccines is a contributing factor to developing neurological disorders, including, but not limited to, modest declines in intelligence quotient (IQ), autism, and Alzheimer's Disease. And the body of evidence to support that conclusion gets larger every day.

Yet we continue to hear repeatedly in Congressional hearings, in media communications, and through government and scientific reports that “there is no evidence that proves a connection between vaccines and autism.” This conclusion is not too surprising when you consider that our health agencies seem to routinely dismiss out of hand any scientific study that does conclude thimerosal is a danger.

Experience tells us that, as with any other epidemic, while there may be underlying genetic susceptibilities, there usually is some type of environmental trigger as well, such as a virus, fungus, heavy metals, pollutants, or whatever. There has never, to the best of my knowledge, been a purely genetic epidemic. So, genetics alone cannot explain how we went from 1 in 10,000 children with autism spectrum disorders twenty years ago to 1 in 166 today. Considering that mercury is a base element and the most toxic substance known to science outside of radioactive materials, it is biologically plausible that mercury is an environmental trigger of autism.

Recent studies indicate that more than half of pediatricians said that in the previous year they had encountered at least one family that refused all vaccines, while 85 percent said they’d had a parent turn down at least one shot. Whether it's because of fear that mercury used as a preservative in childhood vaccines causes autism, or that the dangers of immunizations far outweigh their benefits, or that there is a conspiracy by drug companies, doctors and vaccine makers to conceal the harm, the facts are clear, more and more American families are fighting immunization.

It is imperative that we do all we can to restore the public's trust in vaccinations. And the only way we are going to resolve the conflict of opinion over thimerosal is through more research. Unfortunately, if the Department of Health and Human Services never funds or conducts the right studies, and given their current track record on the subject that is very likely what will happen, this question will forever remain unanswered. That will be a national tragedy because often once an environmental cause is discovered, immediate steps can be taken to prevent new cases and abate the epidemic. In addition, knowledge of the environmental cause or triggers often leads directly to more effective treatments.

For example, this bill promotes the use of evidence-based interventions for those at higher risk for autism. However, so long as we ignore the potential danger of mercury many biomedical interventions, such as restricted diet, applied kinesiology and/or chelation therapy ⎯ which many families have found to be the best treatments for their children with autism ⎯ will be excluded from the list of evidence-based treatments.

I stand here today not just as a concerned grandfather of an autistic child but as the voice for the hundreds of parents and families who continue to contact my office looking for help for their children. They are our constituents, we represent them in the People's House, and I hope we are all listening to them. The debate about mercury in vaccines must be addressed, investigated and resolved. Parents have a right to know what happened to their children regardless of where the truth lies. And we have a responsibility to those children and families already suffering. In the meantime, we should err on the side of caution and remove thimerosal, even trace amounts, from all vaccinations.

Like some of our friends in various organizations that maintained their support of the CAA, Rep. Burton feels this flawed bill is better than none. I respectfully disagree with the distinguished gentleman, but I agree with his major point: this country’s vaccine policy ⎯ and perhaps the nation’s health-care policy as a whole ⎯ will not be deemed trustworthy unless all plausible hypotheses are examined.

What are our leaders so afraid of? Why are they so afraid of examining the issue? And why are they so afraid to let one of their own have his say in “the People’s House?”

BE CAREFUL WHAT YOU ASK FOR . . .

And so the Combating Autism Act will be passed after all. As I feared, we will be getting a “Bartonized” version that will make it even less likely that we will see any meaningful research into environmental causes coming out of all this. The more I learn ⎯ and I’ve been learning a lot lately ⎯ the more I come to the conclusion that this bill is nothing more than a large Trojan Horse.
And every member of Congress who votes for it can say, “but it’s what the autism community wanted.”

{Sarcasm alert!} Thanks Autism Speaks, thanks a lot.