JUST ANOTHER REFUGEE

If my last post seemed a little disjointed, it was because I completed it late at night after driving many long hours. It was posted via the high-speed internet connection in a hotel room. My family is on the road. We are refugees.

When we went to bed Friday night, we believed that Hurricane Katrina was headed to the Florida panhandle. By the time we awoke on Saturday morning, it was coming to the New Orleans area where we live. We saw the predictions of a Category V hurricane coming so close, and we knew the only sane thing to do was evacuate.

We packed what would fit into the car and grabbed a few precious hours of sleep. Around 3:00 a.m., Sunday morning, two adults, one teenaged boy, one autistic child, and one Cairn Terrier set off on what we assumed would be a one-to-two day trip. (That assumption was a little too similar to the assumption of a certain group that their trip aboard the S.S. Minnow would be but a three-hour tour.)

The “contraflow” system designed to speed the flow of evacuation worked well. In essence, the State Police shut off in-bound traffic on the major arteries coming into the area, and then designate all of the lanes for out-bound traffic. Even in the middle of the night, there was a steady flow of traffic heading north on Interstate 55.

The second rest area in Mississippi resembled a refugee camp just outside of a war zone. Vehicles were double-parked. People were sleeping on picnic tables. Impromptu parties were well underway. About ten minutes after leaving the rest area, I realized that a pretty sizable percentage of that crowd probably had nowhere to go. Many of the refugees were likely without sufficient funds to get a hotel room, and probably could not afford the gas to get much further than they already had traveled. I couldn’t help but wonder how many of the people in that rest area intended to ride the storm out right there.

Hotel rooms were unavailable in Monroe or Shreveport, so we drove all the way to Arlington, Texas. It seemed a likely spot. It was well away from the storm, had plenty to do, and was close to my oldest brother’s home. But we did not intend to move here. It’s Wednesday afternoon as I post this, and there’s no indication that we will be able to go home any time soon.

I was nine years old when Hurricane Betsy passed close to New Orleans in 1965, causing devastation to parts of the city. My recollections of the week or so after that storm are relatively pleasant. It was kind of like a camping trip; we had no electricity and my mother heated canned food over a sterno stove. This time around, I have a lot more creature comforts, but I don’t think I’ll look back on Katrina with any degree of fondness.

It hasn’t been all bad. Texans make for pretty friendly hosts (although I have to say they may be the most dangerous drivers I’ve seen south of New York City). There are plenty of diversions; the other night my sons saw their first Major League game (well, Rangers versus White Sox, which is close enough to Major League baseball).

About half of the hotel’s guests are Louisiana evacuees, and it seems like over half of us have our dogs with us. It’s reminiscent of the hotel in the movie Best of Show; one can walk down the hallway and hear woofing at about half the doors. The hotel staff just smiles at the unusually high number of four-legged guests, and all the dog families have formed a kind of community within a community within a community.

In general, the hotel has been great. I’ve been thinking of suggesting a new advertising campaign for the chain:

Pet Friendly! Free High-Speed Internet Access! Free Continental Breakfast! Coin-Op Laundry!
La Quinta: the right choice for your next evacuation!

One of the things we needed in a hotel room was a refrigerator for the supplements and special food items our son needs that require cooling. Maintaining his biomedical intervention has been a challenge. We have always been able to handle the biomedical routine on “vacation,” and we’re doing okay with it on this trip. But our son has been a little wild, emotionally volatile, and stimmy. There has been too much of a break in his routine, too much inconsistency in our interventions, too many possible gluten or casein infractions, and too much distraction on the part of mommy and daddy who are constantly seeking more information about thehttp://www.blogger.com/img/gl.link.gif state of things back home.

Although the “pet friendly” part was one of the most important things when we looked for a hotel, the internet access has become our real lifeline. During Hurricane Betsy, I recall my family huddled around a transistor radio listening to the reports, and we felt less alone. Even though we have kept the hotel television on the news reports, we have also used the internet, which has brought us closer to home in the same way the transistor radio did during Betsy. Even when WDSU television could no longer broadcast its signal over the airwaves, they were streaming reports live on their web site. WWL television updates its site several times a day with the type of information we are desperate for, like how far did the floodwaters get in our community. The information we get from the Louisiana media is more intimate than we get from the cable news networks, and somehow it’s easier to get bad news from friends. And the news has been mostly bad.

There are no adequate words that can describe what it has been like to watch television and see the city I grew up in -- the city I love -- looking like it does right now. We’ve been seeing scenes that look like World War II newsreel footage, and then we recognize what’s left of a building or a neighborhood. It’s surreal and it’s heart breaking. I know this town. I know these people.

So far, the word on our loved ones seems to be good. I’ve heard from my daughter who rode the storm out in Baton Rouge and, except for losing power for several hours, seems to have come through quite nicely. We’ve gotten word about some of my wife’s family, who are well. But we’re still waiting to hear from others in both families along with a lot of friends. We’ve heard from friends, many of whom have lost everything they had but their lives. Both cell towers and land lines are out through much of the affected area. All we can do is wait, keep trying to get more information, and pray.

The authorities are still not allowing residents of St. Tammany Parish, where we live, back into the area. Most of the flooding in St. Tammany was in Slidell or the parts of Mandeville closest to Lake Pontchartrain. Our house should have been safe from the flooding (although that’s not necessarily a given), but we have many large trees around that could have easily been blown over onto our house in the storm. We really do not know if we have a home to which we can return.

I don’t know if we have a home. I don’t know how much of my “stuff” has been lost. I don’t know if the firm where I work still exists. But I look around me and see that my family is well. We will survive this.

ANGER AND RUSH TO JUDGMENT

The reaction we’ve seen to the tragic death of Abubakar Nadama has been sadly predictable on both sides of the biomedical debate. And we have all been so busy using a dead five-year old as a tool for proving our points that we have completely forgotten that he has a family that needs to mourn without the distraction of a lot of shouting and finger pointing.

Many of us in the pro-biomedical community -- and I count myself in that number -- rushed to express our self-righteous anger at a medical system that we presumed was not allowing a Pennsylvania doctor to admit a child to a hospital as an out-patient for an intravenous procedure. Then I came to realize we did not know that for a fact, and we really know very little about what happened.

In a perfect world, parents of dysfunctional children (and not every child on the autistic spectrum meets that criterion) could wait for the years it will take to complete clinical studies of biomedical treatments in all their permutations. But many of us worry about the ability of our children to function independently as they grow into adulthood. The commonly reported experience among parents who practice biomedical interventions is that their children were steadily regressing until beginning the intervention, after which they observed steady improvement. Waiting until a child is approaching adolescence before deciding whether he or she will ever function independently is not a choice I would make for my son. So we choose to intervene biomedically, and part of that is chelation of heavy metals.

Does that mean we should jump at any potential treatment in the hopes of a “cure?” Only a fool would act so rashly. Like any course of treatment or intervention, potential benefits have to be weighed against real risks. And even the slightest risk requires safeguards. In general, mercury chelation with DMSA and/or DMPS has been performed safely, although continual monitoring and testing is required to ensure that no harm is done. As far as I know, IV-EDTA is not used for mercury chelation, but is sometimes used for lead chelation. And so I must assume that Abubakar tested high for lead.

Quite often, our kids test high for lead, which is probably due to the same glutathione deficiency that makes it impossible for our children to naturally excrete mercury. High lead levels obviously become a matter of concern. Many biomedical doctors, therefore, prescribe EDTA even though it is not part of the official DAN! protocol. The reason for using EDTA -- which is considered an acceptable treatment for lead poisoning -- as opposed to DMSA is that many of our children have fairly severe “gut” reactions to DMSA (the same reason many parents opt for DMPS to chelate mercury).

But chelating lead with IV-EDTA, a drug approved by the FDA for that purpose, should not be lethal. What happened? We don’t know, and we are so frustrated that we feel the need to get angry.

If our initial anger was predictable, the response by the anti-biomedical crowd to the child’s death was both predictable and perverse. Out of one side of the mouth, some said the incident proved that all chelation was unsafe. Out of the other side, the same people proclaimed that DMSA was the proven safe method for chelation of both lead and mercury. Which of those contradictory statements was true? Everywhere one looked on the web, fingers were pointed at the entire movement. On Kevin Leitch’s blog, I tried to address some of the sincere anger expressed by those who do not share my support of biomedical interventions. And I addressed our obligations in the biomedical community:

I agree with you that we in the biomedical community should not be pointing fingers at anyone right now. If we really want to claim Abubakar as our own, we must also take ownership of his death. We must actively seek answers no matter where they may lead, and we must be willing to accept whatever blame belongs with us. But don’t assign that blame until we know what happened.

What I thought was a pretty balanced statement drew fire. I had to explain to one person, who scolded me for trying to turn Abubakar into another Terry Schiavo, that all I meant by “taking ownership” was that those of us who felt a kinship to the Nadama family have “to earn that kinship by asking ourselves some difficult questions, even if they lead to answers we don’t like.”

A comment was left at Kevin’s blog by an anonymous (of course) person who called herself “Angry Mom:”

I also hope that the family of little Abubakar, the healthy little autistic boy who was beautiful and who ran happily in his family’s garden according to a neighbor, will become filled with anger at the autism biomed “community” and expose exactly who it is that convinced them their son was “mercury toxic” and what lab told them that and which doctors promised quicker recovery with IV chelation.

I hope his family ends up with everything now owned by Dr. Usman, Dr. Kerry, St. Martin’s press, David Kirby, Dr. Gary Gordon, Autismmedia, DAN!, Arianna Huffington, Craig Westover, Lenny Schafer, Rick Rollens, Dr. Byrd, Sallie Bernard, Mark Blaxill, Lyn Redwood, Lujene Clark, “moms against mercury”, “dads against mercury”, Dan Burton, Ginger Taylor, John Shestak, Poria Iverson, Rashid Buttar, Boyd Hayley, JB Handley, Dr. Deth, Any Holmes, Wade Rankin, the NAA, ASA, Autismlink, autism 1 and all the rest. That would be fair.

Wow. I must admit that I am extremely flattered to be mentioned in the company of people I consider to be heroes. I am afraid I’m being given a little too much credit. This blog has only been up since August 7, 2005, and nobody really noticed it until the last couple of weeks. I kind of doubt Dr. and Mrs. Nadama have ever heard of me, but if it puts me in a league with the other people mentioned, it would be worth the price of admission. I would be interested, however, to know from this “Angry Mom,” who is encouraging legal action against all of us, if she is one of the people who always accuse the anti-thimerosal movement of being litigation driven.

I still think we in the biomedical movement have a lot of questions to ask ourselves. But before we can even formulate those questions, we need to have more information. Was Abubakar’s death the result of an anaphylactic reaction, hypocalcemia, or some yet-to-be-thought-of reason? If hypocalcemia was the direct cause of death, was it brought on by a failure to replentish the child’s minerals, including calcium, with supplements, or did the doctor use Disodium EDTA rather than Calcium EDTA? Was the proper dosage used? Did the doctor perform all appropriate pre-procedure checks? Was the child properly monitored in between chelation procedures?

When we have the answer to all those questions, we’ll have a better idea of whether anyone needs to bear the blame for this tragedy. In the meantime, let’s try to respect a family that needs to mourn a child. Let’s all shelve our anger for a while. And let’s honor the Nadama family’s mourning by redoubling our own efforts to protect our own children. That includes learning all we can and being equal partners with our doctors.

I commend to you David Kirby’s latest post at The Huffington Post. Although Mr. Kirby doesn’t have all the answers and, in fact, seems to be unaware of the occasional lead problems in our kids, he asks a very important question. Why, four years after the Institute of Medicine called for studies of chelation’s effectiveness and safety, why are we still waiting for any studies to be undertaken?

I’M BEGINNING TO UNDERSTAND NEURODIVERSITY (AND HOPEFULLY VICE VERSA)

The comments to my prior post, “Trying to Understand Neurodiversity,” convinced me to postpone my plans to cover other subjects. This post won’t be so much about the neurodiversity movement itself as about how we get past the differences to have a truly meaningful dialog. The bad news is this is going to be a long post. I know what you’re thinking; all of Rankin’s posts are long. I mean this one is really long, so pour a cup of coffee or a glass of wine, and make yourself comfortable.

In writing my earlier post, I intended to express a willingness to explore what divides us and what unites us in a calm and productive manner. I was gratified, but not really surprised to learn that several people from the neurodiversity community shared that willingness and seized the opportunity to have cordial discussions.

One new friend, jypsy, noted my use of the term “anti-thimerosal/biomedical advocates” to describe people who share my views on what triggered my son’s symptoms, and what seems to be working. My awkward choice of words reflected my struggle to find some shorthand means of describing the focus that many of us have in discussing ASD issues. That struggle is almost a metaphor for the entire problem we’ve been discussing. We’ve all become victims of semantics.

The inability to find the right words lies at the heart of the separation between the neurodiversity and biomedical communities. Parents in my position use words like “disease” and “cure” because the disease model is readily understandable to us. Yet it may not be adequate to really explain what is going on with our kids. Misunderstanding occurs because our interpretation of any word is naturally colored by our own experience and perspective.

When I say “cure,” or “reversal,” I’m really referring to alleviating adverse biochemical and neurological processes that are interfering with an individual’s ability to fully utilize all of the natural gifts that individual possesses. Someone else may see the word “cure” used and worry that someone is attempting to remove their own gifts http://www.blogger.com/img/gl.link.gifaltogether because the use of those gifts may not fit in with the “norms” of society. Still another person may cringe at the thought of that “cure” being taken one step further into the realm of genetic engineering.

The views I have regarding my son’s condition are generally the same views expressed by organizations I respect like Safe Minds, No Mercury, and Generation Rescue. As I’ve said before, I call my son’s condition ASD because that’s what the last line of the evaluation said. And yes, I think his condition, or at least the problematic part of his condition, was triggered by exposure to environmental toxins, including thimerosal. Yet I wonder if we aren’t all being myopic about ASD, its causes, the means of “curing,” and even the necessity of “curing.”

Brett Miller’s blog, “29 Marbles,” often explores the dynamic many of us struggle with: how to balance the need for acceptance of our children with the desire to improve our children’s lives. In one of his recent posts, Brett reviews a newspaper account of recent genetic studies. One autism researcher is quoted in the article as saying that the “measure of autism is usually the inability to cope in the real world,” and autism is “only a disorder if it causes stress or interferes with function." The experience most common to members of the biomedical community relates to ASD severe enough to cause dysfunction, and it’s that dysfunction we’re trying to cure.

Robin Nemeth’s comment to my earlier post demonstrates that there can be a pretty wide divergence in where an individual fits on the spectrum. The comments by Lili present anecdotal evidence of a family in which ASD is pervasive without any identifiable environmental insult. It’s entirely possible that many high-functioning folks did not receive the same type of damage from vaccines that some of our kids did. And I can’t completely discount the possibility that just maybe our children would have been somewhere on the spectrum, albeit at a higher functioning level, without the thimerosal trigger. Given the current state of the science, I can’t say anything with certainty except that my son’s regression after vaccines, and his improvement after biomedical intervention fit into the vaccine-damage hypothesis.

Because our experience is so tied up in what we have witnessed in our children, we naturally think that everyone on the spectrum must have been “damaged” in the same way. Forgive my use of the word, “damage,” but that’s the point. We see damage. Could it be a comorbid condition to ASD caused by environmental insults to which persons on the spectrum may be particularly susceptible? Sure, that’s a possibility, but we call our children’s condition -- including all of the manifestations -- ASD because that’s the label the “experts” put on our children.

Context is everything. The more I read of her writing, the more I am coming to respect and admire Kathleen Seidel. She speaks eloquently on behalf of people who should be considered valuable contributors to our society and culture. We disagree on whether there is an epidemic, on whether thimerosal can act as a trigger in the development of autism, and whether biomedical responses are appropriate. But I also believe that her real problem with “us” is with our semantics.

Some of Ms. Seidel’s postings are difficult for me to read. Those writings detail comments and actions by some of us in the biomedical movement that Kathleen finds offensive. Some of the complaints involve people in the anti-thimerosal and biomedical movements whom I admire. I understand Kathleen’s points, but I would plead with her to try and consider the context, and perhaps forgive any offense so we can all move on.

Part of that context is the frustration anti-thimerosal activists and biomedical parents have known all too well in these past few years. Despite an ongoing scientific process that we believe supports our opinions, we have been constantly derided and called kooks, conspiracy nuts, greedy plaintiffs, and uncaring parents. We eagerly anticipated the IOM examination of the issue, and were bitterly disappointed when the panel chose to discard the emerging evidence in favor of epidemiological reports we believe are fundamentally flawed. (I really don’t want to discuss epidemiology’s limitations and the IOM report in this particular post, but I mention our viewpoint only to help explain context.) We constantly got our hopes up when we found out that a national media outlet would cover our issue, only to get disgusted at a story that paints a ridiculous picture of a monolithic scientific community patiently explaining to a group of misguided and misinformed mothers that they just don’t understand science. (The occasions on which the national media has presented a balanced picture have been rare indeed.)

All of that frustration tends to make us a little defensive. And being human beings, we sometimes subscribe to the theory that the best defense is sometimes a good offense.

I am sometimes confronted with comments (at least one on this blog, and several at The Huffington Post where I sometimes leave comments) that my son’s ASD can’t possibly be related to thimerosal, and that my wife and I are, at worst, jeopardizing his health or, at best, encouraging quackery by following a biomedical path. At first, I was offended at the harsh tone of some of those comments, but I soon realized two things. First, I had placed my name and comments in a public place on the internet, thus inviting opposing views. Second, and more importantly, the people giving me the “benefit of their views” probably believed in what they were saying every bit as much as I believed the opposite. Given that, they not only had the right to say what they did, but they probably felt obliged to write with missionary zeal. The same can be said for most comments suggesting “cures” to high-functioning adults (or parents who share the neurodiverse viewpoint) who are quite able to make up their own minds.

One must also consider where a heated exchange takes place. Blog sites like this one or The Huffington Post are essentially electronic op-ed pages. Indeed, my motivation for starting this site was to create a place where I could not only set the agenda, but also foster the free exchange of ideas with people who may disagree. Internet discussion boards, on the other hand, serve a very different purpose.

I do not personally monitor or participate in the Evidence of Harm board, but my wife is a member of that group as well as a few others. She uses the groups to find out what is working and not working for others, as well as to hear the latest news on the issue that affects our family life the most. Although such groups generally have an “open” membership, the nature of the boards is such that they function more as a closed support group than an open debate. In that environment, thoughts are sometimes blurted out without a whole lot of thought given to carefully expressing one’s true intent. Then, when an element of dissent or debate is added, the natural result is often harsh rhetoric.

I might add that I have not researched the complete context in which the exchanges between Ms. Seidel and members of the biomedical community occurred, and so I cannot comment on whether the individual posters may have felt justified in saying what they did. It is also clear that Ms. Seidel often gave as good as she got, a factor that sometimes makes it more difficult for a cessation of hostilities.

From Kathleen’s standpoint, all that may not excuse all of the harsh comments she describes in some of her writings, but I think the comments become more forgivable. What seems more problematic are suggestions that were apparently made that one person or another should be inundated with emails or phone calls. Even if not intended to be an actual suggestion, there is always someone that might think it a good idea. Following through on such an idea crosses a pretty clear line into the realm of harassment. Besides subjecting the harasser to legal difficulties, the only thing accomplished is to tarnish the cause that some of us hold pretty dear.

My point in all this (geeze Wade, you sure took a long time to get to the point) is that we can have a pretty rational discussion about the issues that divide us and unite us if we can get past the urge to win debate points. The comments to the prior post prove that we really can get along. So let’s shelve the harsh rhetoric, stop worrying about any perceived insults of the past, and start learning from each other. But considering our disagreement on so many core issues, it seems fair to ask what we can work together toward? Kathleen Seidel can answer that one:

I am convinced that society must work to discourage the proliferation of dehumanizing characterizations of autism and autistic people. We have got to continue to work to develop our understanding of autism, to work to improve the quality of life for all autistic citizens from childhood through adulthood, to continue to identify means for autistic people to gain the skills and knowledge they need to get along in the world, and to learn to interact in a respectful way.

It’s pretty hard to argue with that.

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Eventually I plan to get back to more substantive topics, but I believe I’ll take a little time in the near future to talk in general terms about “respect,” because that’s really what all of this is about. You can’t be respected if you don’t show a little respect. And you can’t change the world if you don’t have respect.

THE PLURAL OF ANECDOTE

There’s a pithy little saying I hear an awful lot in the debate over thimerosal; those who argue that science does not support a link between thimerosal and the development of autism spectrum disorders often recite it. When confronted with the combined and consistent experiences of so many families, these defenders of the official position (including Dr. Harvey Fineberg in his recent appearance on Meet the Press) recite the mantra that “the plural of anecdote is not evidence.” Their use of that rusty saw in this context ignores the fundamental nature of the scientific method.

I am not a scientist, but like anyone with any degree of education, I took science classes and learned about the scientific method. As I recall, the process begins with a step called “observation.” Based on observations, the inquirer forms questions and then a hypothesis. Then experiments are conducted to prove or disprove the hypothesis. Until the hypothesis is proven or disproved, further observations, including observations resulting from the experiments, may be made that may alter the hypothesis, leading to further experimentation. Anecdotes are observations.

Any rational person must accept that anecdotal data cannot stand as evidence to support a failed hypothesis (i.e., a hypothesis that has been definitively refuted). But the hypothesis that thimerosal plays a role in the development of genetically susceptible children has not yet been proven or disproved. The absurd notion that the epidemiological studies cited by the Institute of Medicine’s 2004 report disprove the thimerosal/autism hypothesis inflates the importance of epidemiology in determining biological causation. Moreover, the flawed methodology of those epidemiological studies renders them practically useless for the inquiry.

The late Carl Sagan coined a corollary to the plural-of-anecdote maxim: The absence of evidence does not mean the evidence of absence. The fact that the thimerosal/autism hypothesis not yet been proven means only that the process prescribed by the scientific method is ongoing. Until conclusions are made with some reasonable degree of certainty, my son and all the other anecdotes are still relevant.

TRYING TO UNDERSTAND THE NEURODIVERSITY MOVEMENT

A seemingly universal part of the human make-up is the steadfast belief each of us has that we are right. A problem arises when we try to apply to others’ lives that which is right for ourselves. Sometimes when I make that mistake, I take a step back. Only then do I realize how easy it was for the other person to interpret my compassion as arrogance.

Lately I have noticed a great divide forming on the internet between those of us attempting biomedical treatments for our children on one side, and members of the neurodiversity community on the other. That divide is difficult to put a finger on, partly because, by definition, the neurodiversity community is … well … diverse in composition and beliefs.

As parents, we know that our autistic children are capable of far more emotion than stereotypes portray. I know the gut-wrenching experience of seeing “typical” kids ignore my son, or, worse yet, seeing idiotic adults assume my son is mentally retarded. Members of the neurodiversity community know that same pain, but they seem to feel it is caused as often by the actions or words of anti-thimerosal/biomedical advocates as much as it is by unfeeling members of the general public. It is incumbent on all of us to learn why they feel that way, and perhaps look at ourselves.

One of the most visible commentators from the neurodiversity community is Kathleen Seidel. I have been reading some of her web site, but I need to read a lot more before I feel I can intelligently comment on what she has written. At this time, all I can say is there is a lot I disagree with, but there is also a lot with which I agree. I want to learn more from -- and about -- Ms. Seidel before I condemn or praise her.

Why should I want to learn anything about folks who seemingly believe that autism, Aspergers, and other parts of the spectrum are not so much diseases as the normal condition of their lives? What can these folks teach those of us who treat autism spectrum disorders as diseases for which a cure may possibly exist?

While trying to learn more about neurodiversity, I came upon a blog entitled “Thoughts of a High Functioning Autistic Teen.” In her writing, an extraordinary young woman lifts up her frustration, her pride, and, yes, her anger for our enlightenment. She is intelligent, articulate, and very self-aware. And she does not wish to be cured. Instead, she wants respect for who she has become and who she will become. This teenager deserves that respect.

For those of us who believe strongly in biomedical treatments, it is easy to think it is “the answer” for everyone. Most of us who practice biomedical do so partly because we know that, absent some form of intervention, the odds are that our children would never reach the extremely high functioning level of communication practiced by the teen-aged author of the above-referenced blog. We want our children, when they reach their later teen years, to be able to tell us how they feel about the choices we make in their lives.

I hope the choices my wife and I make for our son may enable him to attain a level of independence he might otherwise not achieve. But I am trying to learn to set aside my arrogance and respect the decisions that others make. I am trying to learn to look beyond my own son when I see another autistic child.

FOOD FOR THOUGHT

I live in the New Orleans area where we take food VERY seriously. Analogizing everything to eating is a natural part of the local idiom, and that includes talking about “food for thought.” Here’s a couple of morsels for you to chew on.

First is a new story by Dan Olmsted, the UPI Consumer Health Editor. (You may be familiar with Mr. Olmsted’s much-talked-of series about the low incidence of autism in the Amish community.) He leaves the Amish behind in this new story, instead taking a look at one of the original autistic patients diagnosed by Dr. Leo Kanner in the late 1930’s. Mr. Olmstead also examines the belief that this patient’s autism improved after the administration of gold salts for arthritis. As is true of Mr. Olmsted’s Amish series, this story is not presented as a scientific study; it is merely food for thought.

By the way, I agree that autism undoubtedly existed before Dr. Kanner gave it a name. But isn’t it interesting that the incidence was so rare that it remained unreported and had no name before Dr. Kanner discussed it, (or, as Dr. Kanner described it in 1943, a condition "markedly and uniquely different from anything reported so far")? And isn’t it interesting that its emergence into something that now needed a name came shortly after the introduction of thimerosal into vaccines? Please note that the previous two sentences are phrased as questions. I do not claim that the timing proves anything; it is merely food for thought.

The second link I have for you comes from Dr. Margaret Cook, a British hematologist (or haematologist as they say there) who “retired” to become a critic of the U.K.’s health system. Dr. Cook’s contribution to this discussion is not a scientific study, but is simply an op-ed piece relating her perspective of the possible link between vaccines and the development of autism spectrum disorders. The editorial breaks no new ground, but I think it is well-written, and it is noteworthy for raising an issue that does not get enough attention. Simply stated, is there a combined impact from different kinds of vaccines? Do thimerosal-containing vaccines impair a susceptible child’s immune system to the point that live-virus vaccines (like the MMR) push the child over the edge into autism? Again, I have no answer to those questions; I am merely providing food for thought.

I must point out that I am not opposed to vaccinating children. I thank God for giving us the wisdom to find a way of fighting dreadful illness. I thank God my children will not run the risk of contracting polio or measles. Unfortunately, the wisdom with which we were endued did not adequately prepare us for the exercise of restraint in developing a safe vaccination program.

We (meaning society) vaccinate our children for everything, without regard for weighing the nature of the threat posed by any particular disease against the risk from the vaccine itself. We vaccinate our children before their brains are fully developed – before there is even a blood-brain barrier. (Can someone please tell me why it was necessary to give my son the first of three Hep-B shots when he was just a few hours old? I would have gladly monitored his behavior to ensure he did not engage in unprotected sex or intravenous drug use for the first six months of his life.)

Worst of all, we placed a neurotoxic additive into many of the vaccines, just for the sake of a little economy. And we did it all without taking a little time to study the potential for harm in our actions. Shame on “us.”

Of course, that’s just my opinion: just a little food for thought.

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P.S. If anyone is interested in reading another view on how we should rethink our vaccination program, I recommend reading Dr. Jay Gordon’s thoughts on the subject. I don’t disagree with some things he has to say, but I find Dr. Gordon’s writing to be mentally nutritious food for thought.

VOODOO WORKS! (PART II)

My last post discussed how controversial it can be to even discuss the biomedical approach to treating autism spectrum disorders, even with friends. The approach includes a gluten-free/cassein-free ("GFCF") diet, supplements (vitamins, enzymes, probiotics, minerals, and aminos), and chelation. Some people liken biomedical to voodoo, a name I can live with. Calling it by a funny name does not diminish the positive results my wife and I have seen in our son. So, voodoo works, at least for us. I think it would work for a lot more people if utilized appropriately.

That is not to say that I think anyone who doesn’t use a biomedical approach to treatment of ASD is shortchanging his or her child. I respect any well-considered choice a parent makes. We all want to do what is best for our children, and I understand the concerns of parents who opt for other approaches. Indeed, we must all be comfortable in what we do, and we must all avoid being half-hearted in whatever treatment approach we use.

Ginger Taylor’s recent blog, "Duffy’s Dilemma," covered the decision-making process better than I could hope to do, but I would like to share some of what my wife and I have learned about getting the most out of this approach. If you’ve already decided that biomedical is not for you, you can skip the rest of this post.

There is one common thread to any advice that can be given. First, last, and constantly in between, exhaustively research the issue for yourself. Learn about the various modalities before you consider going down the biomedical path, and keep researching it after you start. Find a good discussion group on the web with other parents using biomedical treatments.

No matter how much you educate yourself, do not try a biomedical approach without appropriate medical direction and supervision. This is a medical procedure; treat it as such. Many dedicated doctors have affiliated themselves with the DAN! (Defeat Autism Now!) program developed by the Autism Research Institute. Those physicians know the protocols and are best equipped to guide you in your child’s treatment.

Keep in mind that the various elements of biomedical treatment are intended to work as parts of a whole. Don’t start adding supplements until you have tried the GFCF diet – and you are sticking to the diet. Don’t start chelation to get rid of metals until you have started the supplements.

Just like standard pharmaceuticals, supplements interact with each other and with foods. Make sure you are administering probiotics and aminos at the right time, and that your supplements are being given in the right combinations. Ask your DAN! Doctor for specific guidance on this, and also listen to other parents’ experiences.

Constantly reevaluate your child’s progress and the process. Keep in mind this is an emerging science and that every child is different. Even within DAN!, there are differences of opinion regarding the protocols. If your research and your observations tell you there may be a better way, do not be afraid to discuss it with your doctor. We are now on our second DAN! Doctor even though the first one is a fine physician. Based on what we knew, however, we thought it best to take our son’s treatment in a different direction. Once again, these are the types of decisions that can only be made if you do your homework

We constantly fine tune our son’s protocol based on his progress and what we have learned from our doctor, our research, and other parents. Changes are a joint decision we make with our doctor.

Be patient. The process can take a couple of years. In my house we aren’t too worried about the time, because we’ve already come a long way in a short time. With every step we’ve seen improvement. We started the GFCF diet during a school break. After my son returned to school, his teacher asked what we had done to provoke such an amazing improvement in just a week’s time. In the months we have been following a biomedical protocol, my son’s speech and language rapidly progressed from pointing and using single words to speaking in complete sentences. His attention and eye contact are vastly improved. Most interesting of all, my son’s impaired thyroid function, which we believe is related to the same factors that led to his ASD, has improved to the point he no longer needs medication. (His endocrinologist is pleased but a little mystified.) We still have a long way to go, but our little boy has already exceeded any hope we were given by the mainstream doctors who first diagnosed him.

Keep in mind that the underlying hypothesis upon which this treatment is based is that ASD has biochemical causes, and that your child’s immune system is compromised. The more you clean up your child’s environment, the better he/she will respond. We rely as much as possible on organic foods, without preservatives or pesticides. We have worked to remove other potential dangers from our son’s environment by focusing on toxins found in his laboratory tests.

Finally, don’t abandon more traditional therapies that may be appropriate. Although we made a choice to avoid drugs like Ritalin, our son still receives speech and behavioral therapies.

Like anything else involved in raising an autistic child, implementing biomedical treatments is "inconvenient," and it can be costly. For my wife and me, however, the decision was a no-brainer. Our son is worth it.

VOODOO WORKS! (PART I)

A large chunk of my family's day -- every day -- is devoted to administering a lot of supplements to my son. It is all a part of the biomedical approach to treating autism spectrum disorders. There are permutations and adjuncts, but generally biomedical treatment consists of three elements: a gluten-free/casein-free ("GFCF") diet, use of dietary supplements and minerals, and chelation therapy.

My wife and I jokingly refer to what we do for our son as "voodoo," because some people seem to consider biomedical treatments to be the scientific equivalent of black magic. To be sure, biomedical treatment for ASD is a controversial topic; raise the subject with most "mainstream" doctors, and they start muttering something about the lack of double-blinded control studies. And, of course, those doctors are right. There are no studies proving biomedical’s efficacy, but neither are there studies showing it to be ineffective. Embarking on this road requires a parental leap of faith and the willingness to have your child be an anecdote. The only thing I know for sure is that it seems to help my little boy.

Several months ago, I attended a professional seminar and ran into a friend; let’s call him "George." I knew that one of his kids was diagnosed with ADHD, and he knew vaguely that my son had developmental issues. Over lunch, George asked about my son, and I brought him up to date. In the year or more since I last saw my friend, my son’s diagnosis had changed from being a "late talker" to now being on the spectrum, and we believed that thimerosal exposure had something to do with it. But it was okay, I explained, because we were making great progress using a biomedical approach. George’s customary smile rapidly turned downward and he began to shake his head.

George told me how he and his wife attempted biomedical treatment for their son, he thought too much money was being spent without any results in return. When I questioned him, George admitted that they just tried supplements for only a couple of weeks, and they had not strictly adhered to a GFCF diet, because his son didn’t like it. George’s real objections to the biomedical approach as well as the thimerosal-causation hypothesis, however, was based on what his son’s pediatrician told him. George had not read any of the scientific literature himself, and he did not know if the pediatrician personally examined any of the source literature or if he was simply relying on the stated position of the American Academy of Pediatrics.

My friend pleaded with me to stay away from chelation and turn to "proven" medications instead. Knowing that George’s son had been on Ritalin, I decided to avoid confrontation. I knew better than to argue about my belief that the currently available drugs may do a good job of attacking symptoms, but do little to address the underlying cause of the problem. Nor did I want to discuss how any medication’s impact on symptoms will eventually wane as receptors adapt, requiring the shift to yet another drug as a short-term fix. Instead of jumping into that debate, I tried to change the subject by asking George how his son was doing. He responded that things were indeed going well after they changed his son’s medication because Ritalin just wasn’t working anymore. That signaled the time for another change of subject and we spent the rest of lunch discussing LSU football (which can actually lead to more passionate debates than the thimerosal issue).

One of my favorite bloggers, Ginger Taylor, recently posted a terrific commentary, she calls "Duffy’s Dilemma," on decision making and biomedical treatments. I recommend it to anyone who is interested in the subject. In my next post, I plan to address this issue a little more.

TIME WELL SPENT

Tonight I took my 15-year old son, one of my non-autistic kids, to the local fishing pier on the shore of Lake Pontchartrain. There was a nice breeze out on the water, making it the type of comfortable evening we rarely see in South Louisiana during the summer months. A night like this brings people out, and the pier drew strollers as well as fisherfolk. One gentleman and his son caught my eye. The boy was about 10-years old, and was obviously autistic. He displayed the typical stimming behavior I’ve come to recognize, and his speech was relatively undeveloped for a young man of his age. But his father did not seem self-conscious in the least; he was just enjoying some well-spent time with his son on a beautiful evening.

Before the birth of my youngest child (the one on the spectrum) I would have focused on an autistic child and felt sorrow for the parents without bothering to notice that the parents neither needed nor wanted pity. Now I know better.

Having an autistic child is a gift. Every day I get to celebrate progress that I took for granted with my older kids. The attention my son requires keeps him in the forefront of my consciousness every waking moment. He has made me a better parent to all of my children.

RODNEY KING MEETS RALPH KRAMDEN

Thank you to the friend who emailed to let me know my "Comments" section needed to be fixed to allow anonymous contributions. I think I have it fixed now. I’m still new at this, and I ask that you bear with me as I learn how to make this site work. Your comments are most welcome regardless of your views, and I will respect your right to privacy in doing so, although anonymous opinions are not worth much to me. All I really ask is that you show a little respect and civility in your comments.

Respect and civility seem to be in as short a supply on the web as they are anywhere else these days. There was a time between the turbulent sixties and the mid-nineties when we weren’t all spoiling for a fight. Now we’re divided into "red" and "blue," and we’re all too busy talking to listen.

Most of us recall 1992, when the Los Angeles area erupted into riots after some policemen were acquitted of beating an African-American by the name of Rodney King. In the midst of violence born of frustration, Mr. King appeared on live television and pleaded with his fellow citizens: "Can we all just get along?" Oddly enough, even that simple but eloquent statement became a source of division between those who thought Mr. King made a comical figure and those who were touched by the humanity of his gesture.

I’ve been thinking about Rodney King’s plea a lot lately. It seems that everyone is frustrated and angry about something. Cable television and talk radio fan the flames with harsh rhetoric. And the only reason some people engage in any discussion of a given issue is to hurl insults at someone who may think differently.

When I first started getting my feet wet in the bloggosphere by leaving comments on various sites, I found myself drawn into the middle of some terribly harsh and mean-spirited discussions about the causes of autism. I guess that can be expected given the passion that resides within the very being of anyone who lives with the reality of autism on a daily basis. We lost parts of our kids and, dammit, we want to know why and what can we do to make them whole again! It’s a passion that cannot come from greed. I understand that passion all too well, and I too feel the anger and frustration. That being said, I roll my eyes when I see anyone who expresses a different view stand accused of being a "shill for big Pharma" regardless of an absence of evidence to that effect. I wince when I hear of someone’s home number being published on the web for the purposes of harassment. Still, I understand where the anger comes from. It comes from being called a greedy plaintiff, an anti-vax wacko, a conspiracy nut, or just plain stupid.

I have no doubt that people on both sides of the thimerosal issue will claim that they didn’t start the harsh war of words. It’s all a matter of one’s perspective. I try to keep that in mind when I see comments or blogs by the self-appointed guardians of science. I often wonder about the source of their passion for debating against the thimerosal-autism connection. It’s hard to believe that they all could be shills considering the relatively wide range of topics they cover in their own blogs, but their zeal for debating "our" issue makes them easy targets for the label. Of course, the fact that they refuse to reveal their identities makes it even easier to believe there might be a connection to the vaccine industry. If you ask these anonymous defenders of thimerosal, they say that they are only interested in good science. But does a good scientist dismiss a theory just because it is still in the process of being proven or refuted by the scientific method?

Maybe I’m just naïve, but I tend to think those folks with the cute cybernames are just a bunch of guys and gals who are terribly impressed with their own intellects, and they think we’re an easy outlet for showing off how clever they can be with words. They bait people like me by articulating the apparent stupidity of our opinions, which of course implies the stupidity of anyone who would hold such an opinion. But if anyone dares to use equally harsh rhetoric or, even worse, question the integrity of one of the epidemiological researchers working for the CDC or vaccine manufacturers, they cry out "ad hominem" at the top of their lungs. When one of these fellows gets really wound up, the phrase is repeated several times in a paragraph. I always get a mental image of Ralph Kramden, of Honeymooners fame, putting an angry spin on his classic sputtering: "ad homina, homina, homina."

The hypocrisy of the ad hominem protests is best illustrated on one of their blogs. Skeptico, on July 29, 2005, wrote a fairly interesting and well-written commentary on ad hominem arguments. I’m not sure, though, if he realized the irony in writing that "people on both sides of the political spectrum criticize the other side for this method of debate, and yet they don’t realize they do it themselves." The "comments" section of the blog includes a lively and unusually well-mannered debate that reveals a great deal about folks like Skeptico. In Skeptico’s opinion, it is acceptable debate technique to call one’s opponent an idiot if it’s in the context of criticizing the opponent’s position with particular facts and figures. Although Skeptico correctly refers to the definition of ad hominem arguments as attacks on an adversary rather than an appeal to logic, he ignores the current usage of the phrase that includes any personal attack regardless of its use in an argument. Moreover, even if we refer to the name calling as just plain rudeness, the harshness of tone serves the same purpose as the traditional ad hominem attack: i.e, a tactic to distract from the deficiencies of one’s own argument by baiting the opponent into a personal attack. All a personal attack really accomplishes is a slap on the back from others of like opinion; it will never convince anyone who might otherwise have an open mind.

As usual, I’ve gone a little overboard on making what should have been a couple of simple points. You’re welcome to leave a comment, but please keep it clean and civil. I promise not to call you a shill (unless, of course, you’re Paul Offit). But don’t expect me to take you too seriously if you’re not willing to sign a real name.

A NEW BLOG, BUT THE SAME OLD QUESTIONS

This is a new blog. I chose the name "Injecting Sense" partly because I believe any discussion can use an injection of common sense. The name also reflects an issue that dominates life in my home: whether thimerosal-containing vaccines and possibly live-virus vaccines have contributed to the increased occurrence of autism spectrum disorders in the United States. (For the benefit of anyone who is not familiar with this issue, thimerosal is a preservative sometimes used in vaccines and other pharmaceutical products. Ethylmercury, a known neurotoxin, comprises nearly one-half of thimerosal.) This issue is personal to my family because my youngest son is autistic, a condition we believe is related to vaccines he received. I maintain a keen interest in other issues of the day, and I hope this site does not limit itself to issues of vaccines and autism. But given the passion that people on both sides of the issue have on the subject, I suspect the suspected link between vaccines and autism will be the primary topic of discussion.

Although I may address our family's background in the autism debate in a later post, today is devoted to this morning's edition of Meet the Press, in which Tim Russert hosted -- in Mr. Russert's words -- "a very civil discussion" between David Kirby, author of Evidence of Harm: Mercury in Vaccines and the Autism Epidemic, and Dr. Harvey Fineberg, President of The Institute of Medicine. What made the presentation so refreshing for some of us was the balance.

Unfortunately we too often see coverage by the national media that presents this issue as being between all scientists and physicians in the world unanimously agreeing that there is no connection on the one side, and a bunch of crazy moms who think there is a connection on the other side. There is never any mention of the scientists and physicians who risk their professional reputations to present evidence supporting the theory and who pioneer treatments to help our children. Those one-sided stories are invariably followed by advertisements for pharmaceutical companies. Of course, just about any story on a national news program has a good chance of being followed up by a pharmaceutical ad considering how we can no longer turn on the television without being told to ask our doctors if [insert name] is right for us. The inherent conflict of interest in the national media covering this story is self-evident. To be sure, there have been a few pockets of media that have been more sympathetic; Don Imus and Montel Williams come to mind. But with the exception of some very fair stories by Sharyl Atkinson on the CBS Evening News, the major news operations have pretended that the science only supports one side. Today, Mr. Russert helped NBC News regain some of the credibility it lost as the result of -- to put it politely -- sloppy reporting by its "science" correspondent. The discussion on Meet the Press included credible and well-spoken representatives from both sides of the issue, who were both given an opportunity to state their positions. (One can quibble with the opportunity being a little unequal, but the inequity had more to do with Dr. Fineberg's drawn-out delivery than with any impartiality on Mr. Russert's part.)

Dr. Fineberg made some statements that need to be examined because they raise more questions than were answered. (In fact, the questions are the same ones we keep asking in the hope that someday we may actually get an answer.) First, Dr. Fineberg admitted that no one can know with certainty how much of the marked increase in autistic disorders we have seen in recent years is due to differences in diagnostic standards and how much is due to increased exposure to environmental insults. That is something folks who believe there is a link must also admit -- that we cannot not know with certainty. Certainty can only come when we have learned a lot more about the effects of thimerosal on the neurological development of susceptible children. Even though we cannot know something with certainty does not mean, however, that our suspicions are unreasonable. Common sense tells us that the astronomical difference in the old numbers and new numbers cannot be completely explained by saying we know a lot more about it all now. Personal observations may not be scientific, but they count for something. Even before my son was diagnosed or started showing autistic tendencies, I observed how many more children seemed "different." To be sure, there are autistic adults who grew up before the changes to the vaccine schedule greatly increased the level of exposure to kids. But casual observation does not reveal the same percentages of autistic adults as there are children, especially when one considers the severity of symptoms we are seeing in young children. Unfortunately, there does not seem to be any good means of getting an accurate number for autistic adults by which we can compare the different generations.

As could be expected, this morning's discussion addressed what many of us believe to be the greatest weakness in the 2004 IOM report: its complete reliance on epidemiological reports, and its rejection of any biological studies. Epidemiology serves a useful purpose in examining the issue, and it can provide clues. Population studies, however, cannot be the sole determinant of the question because they cannot fully account for genetic predisposition, and they are too subject to preordained results. I liken epidemiological studies to forensic accounting because changing the input parameters changes the results. We can't have a real answer without clinical, biological, and animal studies. That's why I nearly fell out of my chair when Dr. Fineberg, at a fairly early point in the discussion, stated:

... When you're dealing with a problem as complex as autism, Tim, you have to look at it from many different points of view and assemble evidence from many different vantage points. Biological evidence in humans and in animals, toxicologic evidence, how does the body deal with toxins, and evidence looking at the actual experience in populations.

Well said, Dr. Fineberg. So why did the IOM rely solely on epidemiological reports? The deficiencies in those reports have been well covered elsewhere. In trying to refute criticisms of the five studies on which the IOM relied, Dr. Fineberg ignored most of the objections and instead focused on the one criticism for which he had a pithy response:

When the letter you read states that these five studies were not replicated, I can't help but think that each one of them has been replicated four times. We have now a growing body of evidence, while imperfect, altogether convincing and all reaching the same conclusion, even though they vary in their methods and in their approaches. And that conclusion was no association between the receipt of vaccines containing thimerosal and the development of autism.

How can a study replicate another study when it varies in its method and approach? Why is the approach even valid when -- as could be said of the much-debated Danish studies -- the researchers looked at two completely different groups to measure the differences in vaccines with and without thimerosal? And why should we not consider the funding of the studies (i.e., the regulatory agencies who devised the vaccine schedules and the pharmaceutical companies who manufacture vaccines)?

Late in the conversation, David Kirby tried to return the debate back to the non-epidemiological evidence that seems to preponderate in favor of a link between thimerosal and the development of autism in susceptible children, and he posed a challenge to the IOM:

MR. KIRBY: ... These are the types of things that I think need to be researched further. Yes, we need to look at the epidemiology. There's a whole lot of new biology. This has all been published. None of the biology was published at the time of the IOM hearing. It has since been published, and I actually wonder if the IOM would consider reconvening a new committee or a new hearing to consider the evidence that's come out in the year and a half since the last report.

MR. RUSSERT: Would you?

DR. FINEBERG: Tim, Mr. Kirby's description about the certitude of this evidence, I think, exceeds the actual balance of evidence that is produced when you look at the totality. It's true that mercury is handled differently in the body when it's in the form of so-called ethyl mercury, which is in vaccines, and methyl mercury, which was actually the form, which was -- on which the standards of exposure were based. That's the type found in fish, as has been mentioned. But when you look back at the studies of actual poisonings of children with large amounts of methyl mercury and ethyl mercury, most toxicologists believe that the ethyl form of the mercury is less toxic than the methyl form -- less toxic to the nervous system. And that's based on many experiences with poisoning by these different forms of mercury.

Had Dr. Fineberg been testifying on a witness stand, the examining lawyer would have immediately turned to the judge and objected to the non-responsiveness of the answer, after which the judge would have turned to Dr. Fineberg and sternly warned the witness to simply answer the question, after which he could add in his own explanatory comments. But this conversation was not being held in a court, and Dr. Fineberg was free to evade the question. In doing so, Dr. Fineberg chose to rely on a mantra intoned repeatedly by the pro-thimerosal crowd that has been shown to be false: i.e., the myth that ethylmercury is not as dangerous as methylmercury. The recent Burbacher primate studies demonstrated that a normal primate processes ethylmercury out of the body more rapidly than it does methylmercury. The problem is that the children who have been affected by thimerosal are not "normal." (As the study by Jill James shows, some children are deficient in glutathione, an enzyme that enable the body to process toxic metals from the body.) The Burbacher primate study further indicates that ethylmercury, if it is not processed out of the body, actually is capable of greater harm than methylmercury.

Unfortunately, inconsistency and inaccuracies are what we have come to expect from the people who are supposed to be protecting our children. The following exchange addressed the IOM's recommendation (and it was only a recommendation) of several years ago to remove thimerosal:

MR. RUSSERT: Why was thimerosal then taken out of the vaccination?

DR. FINEBERG: There's no question that mercury is a neurotoxin. And if there were ways, which there are, to protect vaccines without using mercury-containing substances, it was prudent to remove it, not because there was evidence that it caused autism or even definitive evidence that the amounts in those vaccines caused any neuro problems, but because it was an added measure of precaution that was sensible and correct. And I might add that the latest vaccines that contained any thimerosal as a preservative, with the exception of some flu vaccines, were completed in 2001 and outdated in 2003. So anyone watching this program, any parent can be confident that when they take their child to the pediatrician to be immunized this year, they will receive vaccines without thimerosal as a preservative.

Dr. Fineberg is, of course, right that mercury is a neurotoxin, and that safe alternatives to thimerosal exist. Unfortunately, Dr. Fineberg inaccurately reassured America that thimerosal is no longer present in vaccines (a bit of misinformation that Mr. Russert unfortunately repeated at the end of the program). First, and most obviously, thimerosal is still used in most flu vaccines -- vaccines that the CDC strongly recommends be administered to the youngest of infants and pregnant women. Second, thimerosal is still used in the manufacturing process of many vaccines. Although efforts are made to filter the thimerosal out before the vaccine is shipped out, the finished product still contains "trace" amounts of mercury. Indeed, there have been some indications that some manufacturers are more proficient than others in removing the thimerosal. But even if there are only "trace" amounts, the fact remains that thimerosal is still present, and there has never been any real safety study to show that thimerosal is safe at any level for a child that has a genetic inability to excrete mercury. Children are still at risk.

To David Kirby, I extend the thanks of a parent for, once again, being the articulate voice of children who are unable to speak for themselves. Thank you especially for saying that the parents -- the ones fighting this war on the front lines -- need to be listened to.

Tim Russert, you were not perfect. You could have asked more follow-up questions when Dr. Fineberg evaded the issues, and you repeated the misinformation about the supposed lack of thimerosal in current vaccines. Nevertheless, you were refreshingly fair and, unlike so many in the national press, you treated our opinions with respect. Thank you.

Dr. Fineberg, you were obviously prepared, and you have my thanks for showing up and listening to the questions. Now, if we can just get a few answers . . .