MERCURY: MY TWO CENTS WORTH

There has been a minor blog swarm recently, involving an article in Discover on the risks posed by mercury. Ginger, Pat Sullivan, and Random John have all posted about this article, and I decided to join in.

The article breaks no new ground, but it gives a pretty fair overview of some aspects of the debate. Of course, with such an incomplete debate, one cannot expect a very complete review. Along those lines, the article managed to spark an incisive commentary by Random John, who, responding to a sidebar to the article that noted the difficulty in testing for mercury toxicity, wrote:

So, there are two issues here. First, it’s possible that mercury does its damage and then gets out, or that mercury just hides out in the cells and destroys proteins while evading any type of testing we can do. Second, the article notes that chelation therapy does not remove methylmercury (and presumably ethylmercury, the type found in the vaccine preservative thimerosal). Now, it is possible for methylmercury to be metabolized into inorganic Hg2+ which is how it does its damage, and which may open it up for chelation therapy if it is accessible to the chelation agent.

At any rate, it’s still pretty unclear why chelation therapy seems to be successful for some children, but not for others. The polarity of the thimerosal and chelation debates does not seem to cover the ground necessary to understand what's really going on.

I am clear on one thing, though. I want to limit mercury exposure from all sources.

John poses the kind of questions that need to be addressed regarding what might actually happen to mercury in our kids. He also hits the nail on the head when he talks about the “polarity of the thimerosal and chelation debates.” Too many people on all sides of the debate(s) seem to wear blinders that prevent them from acknowledging how little we all know.

My opinion remains that we do our children a disservice if we focus solely on the question of mercury exposure as a causative factor in autism. Conversely, we do our children a disservice if we fail to explore the probability that mercury exposure plays a major -- perhaps the single most significant -- role. Until we start taking a broader look at all of the genetic and environmental factors involved, we won’t begin to understand why some protocols work for some kids and do not for others.

INAPPROPRIATE LAUGHTER

It’s not exactly a secret that Camille Clark and I rarely see eye-to-eye. We have sparred here and there, occasionally coming to the brink of ugliness but never really crossing the line of personal attack. I hope what I am writing now does not seem to be an assault on Ms. Clark’s personality, because I really don’t know her well enough to say what kind of a person she may be. But a recent post she put on her Autism Diva blog disturbed me.

Initially, I wasn’t going to write about this for a couple of reasons. First, I wasn’t sure if I found the post offensive merely because it was Ms. Clark who posted it. But when I couldn’t get it out of my mind, and I spent a lot of time reflecting on it, I realized my reaction was the same as it would have been regardless of the author. My second reason for hesitation was that it involves the Nadama tragedy, something I feel has been written of enough, with too few people thinking of the family’s ongoing grief. Then I decided that was precisely why something should be said.

Ms. Clark has written probably more about the incident than anyone else on the internet, and yet she really hasn’t said anything more than anyone else has. The second half of her recent post rehashes much of what she has said before, quoting an email from Dr. Garry Gordon regarding the apparent and egregious error made by Dr. Roy Kerry in using the wrong form of EDTA. The Autism Diva post goes on to point out specific risks of EDTA. That is a responsible and appropriate commentary regardless of one’s agreement or disagreement with Ms. Clark’s conclusions. Unfortunately, that’s only the second part of the post; the first portion sets an inappropriate tone that undermines the credibility of her argument.

Although the name of Abubakar Tariq Nadama is not mentioned once, Ms. Clark presents the lyrics of a paraody entitled “It’s Fun to Play with the EDTA,” (attributed to “Anonymous 5 “), intended to be sung to the tune of The Village People classic “YMCA.” In another context, most of the lyrics would be just an annoying satire, expressing the “desperate and embarrassed parent” mythology Ms. Clark uses to stereotype parents who turn to biomedical interventions in general, and chelation in particular (and, contrary to what some think, not every biomedical protocol is based on chelation):

Young man, please stop flapping your hands.
I said, young man, please don't stare at the fan.
I said, young man, stranger in a strange land
There's no need to be autistic.

Young man, there's a place we can go.
I said, the DAN, but we'll need lots of dough.
You can't stay there, but I'm sure you will find
Many things they say are white lies.

It's time to chelate with E-D-T-A
It's fun to mix it with D-M-S-A.

They have everything, but you won't have a choice,
You can be just like all other boys ...

Of course, in the context of the current debate, there is a definite connection to the Pennsylvania tragedy. And just in case the connection is too subtle for some of us, the end of this little ditty drives home the point. In so doing, Ms. Clark’s post leaves the realm of “annoying,” and moves into “utterly offensive:”

That's when someone, sent an email to me,
And said, you man, can be mercury free.
There's a place where, out near Pittsburgh PA.
They can start you back on your way.

It's time to chelate with E-D-T-A
While you're there you can Buy-R-N-A

They have everything, that you can afford,
Just ignore the whole medical board...

E-D-T-A ... don't ever ask Why-F-D-A

Young man, young man, look in my eyes.
Young man, young man, don't believe all the lies.

E-D-T-A ... you'll find it stings E-D-T-A.

Young man, young man, there's no need to lie down.
Young man, young man, get yourself off the ground.

E-D-T-A ... just need to defibrillate.

Young man, young man, are you listening to me?
Young man, young man, young man, young man?

I apologize for repeating that here, but I believe that hypocrisy sometimes needs to be highlighted. And I can think of no other word but “hypocrisy” to describe such a post, complete with displays of dancing molecules, which is signed by:

Autism Diva
not laughing

If Ms. Clark is not laughing, why does she feel it necessary to post what -- in the mildest of terms -- is a sick joke?

Ms. Clark has professed great anger at the Pennsylvania tragedy, and I can understand that. Many people on all sides of the discussion/debate are angry and saddened. As much as I have disagreed with her other writings on this (or just about any other) subject, however, those other statements have at least been articulate and, for the most part, respectful. And that’s why I’m dumbfounded by this inane attempt to treat a tragedy as a laughing matter.

Ms. Clark has made many contributions to the internet world of autism. She has proven to the world that she is an intelligent and forceful, albeit narrow-minded, commentator. As Autism Diva, she has an international following. I have no doubt that some of her loyal readers will leave comments here to explain and defend her actions. Explanations would be most welcome, but I don’t believe there is any good defense.

A “diva” is “an operatic prima donna” or a “very successful singer of nonoperatic music.” This time the Diva picked the wrong song.

Wade Rankin
Most assuredly not laughing

SOMETIMES RUMORS TURN OUT TO BE TRUE

A few posts ago, I revisited the tragic death of Abubakar Tariq Nadama, an autistic child who was stricken while undergoing chelation with intravenous EDTA. My purpose was not to extol the virtues of chelation, or any particular species of chelation, as I have never considered it my place to recommend any particular protocol. Indeed, every case of autism presents a unique clinical situation, and there is no one-size-fits-all solution. But in some cases, chelation may well be a component of a comprehensive program.

My real purpose in revisiting a painful incident was to critique opinions that the tragedy proved that all chelation is unreasonably dangerous. Because one of chelation’s most vocal internet critics expressed a reasonable opinion that the direct cause of death was hypocalcemia, I took pretty seriously the rampant rumors that the treating physician, Dr. Roy Kerry, mistakenly used Disodium EDTA rather than Calcium EDTA. Although I ordinarily believe it wise to avoid spreading rumors, it seemed the most likely explanation for hypocalcemia. Moreover, the rumor’s liklihood provided reason enough not to express firm opinions about the lessons to be learned until we knew the full truth. It now appears that the rumor was true.

The Pittsburgh Post-Gazette reports that the autopsy report was obtained and reviewed by Dr. Mary Jean Brown, chief of the Lead Poisoning Prevention Branch of the Centers for Disease Control and Prevention. The CDC is not generally known for its endorsement of the hypothesized link between heavy metal toxicity and autism. Nor can Dr. Brown, a recognized authority on chelation, be considered a proponent of chelation as a treatment for autism (as is apparent from the article).

Despite any reservations Dr. Brown may have regarding the efficacy of chelating autism patients, she does not place the blame for this death on chelation itself, but rather on the wrong form being EDTA used:

“It’s a case of look-alike/sound-alike medications,” she said yesterday. “The child was given Disodium EDTA instead of Calcium Disodium EDTA. The generic names are Versinate and Endrate. They sound alike. They’re clear and colorless and odorless. They were mixed up.”

The article indicates an opinion by Dr. Brown, that “if it were administered accurately, the procedure would be harmless.” That statement is debatable. We must never ignore the fact that chelation, like most medical procedures, carries a degree of risk. And that risk must be carefully analyzed and weighed before chelation is considered.

Like any prudent parent, I want to see appropriate clinical trials conducted to determine both the efficacy and specific safety of various forms of chelation for treatment of autism in cases in which metal toxicity appears to have played a role. But it is worth noting that Dr. Brown, described by the Post-Gazette as “one of the nation’s foremost experts in chelation therapy,” obviously believes the relative risk to be the same regardless of whether autism is involved:

Dr. Brown said the same mix-up happened in two other recent cases: a 2-year-old girl in Texas who died in May during chelation for lead poisoning and a woman from Oregon who died three years ago while receiving chelation for clogged arteries.

Dr. Brown said that in each case, the blood calcium level was below 5 milligrams. Normal is between 7 and 9.

The correct chelation agent -- Calcium Disodium EDTA -- would not have pulled the calcium from the bloodstream, she said.

. . .

She said it is well known within the medical community that Disodium EDTA should never be used as a chelation agent. She quoted from a 1985 CDC statement: “Only Calcium Disodium EDTA should be used. Disodium EDTA should never be used ... because it may induce fatal hypocalcemia, low calcium and tetany.”

“There is no doubt that this was an unintended use of Disodium EDTA. No medical professional would ever have intended to give the child Disodium EDTA,” Dr. Brown said.

So it appears that I was right to urge waiting for facts before making broad generalizations. But it gives me no pleasure to be right. No matter what caused this tragedy, the Nadama’s loss remains. The way any of us can honor their grief is to learn from what happened.

The knowledge that the evidence now shows this incident to be a single case of malpractice rather than an inherent and fatal problem in the protocol will not stop the controversy. There will still be voices screaming of the dangers, although their anger is truthfully less about the dangers of chelation and more about the audacity of using a medical procedure to decrease the impact of autism.

Not long after this is posted, we will start to see comments urging a very different lesson than the facts suggest. Some of those comments will likely accuse me of using a dead child to make a point. That might be fair criticism so long as the accuser is not doing the same. Ironically, however, I expect that some of those who shout the loudest will be the same ones who will invoke this child’s name often to support their own narrow views. I am tired of the shouting and I am tired of the disrespect shown to the Nadama family. I pray that this will be the last time I feel the need to write of this incident, but I suspect that the actions of others will dictate otherwise.

Not long ago, we were urged to light a candle for Liz Birt. That was appropriate; she was a remarkable woman who deserved a great tribute. But tonight, I’m going to light a candle for Abubakar Tariq Nadama, and then I’m going to give my son an extra hug before he goes to sleep.

AND WHILE WE’RE ON THE SUBJECT OF EDUCATION AND SERVICES . . .

I’d like to mention two of my favorite bloggers, both of whom happen to be special educators (ABA consultants and teachers). Stopping by their sites has become a nightly habit for me.

I’m sure I’ve said it before, but I just need to say again. Every parent of an autistic child, every special-ed teacher (every teacher for that matter), every school therapist, every principle, every district special-ed coordinator, and particularly every school superintendent, should read Tina Giovanni’s blog, now retitled Autism: The Epidemic of Denial. Tina writes passionately about her work with students on the spectrum and the frustrations of having to deal with school administrations that just don’t “get it.” Recently, Tina has been telling the story of one of her students, who she calls “Cody,” that is almost a textbook on how to involve the people around a student to create a learning environment.

SquareGirl is a more recent -- and most welcome – addition to the bloggosphere. Her posts are somewhat less episodic than Tina’s, and she covers a lot of ground in addition to autism and education. When she tells of her experiences with her students, it is clear to see that she brings the same creativity, humor, and love to her career that she brings to her writing. Read her latest post in which she wisely speaks of what she learns from her students.

Both of these teachers understand that there is no one formula that works for every autistic child; each student requires an individual approach. And both of these teachers fight for our children. It is a special love that motivates someone to fight for another person’s child. Thanks Tina and SquareGirl.

DOES THIS SOUND FAMILIAR?

I thought that the comments to my last post would have centered on the limitations of the California statistics we’ve all been looking at. But there really was no argument that the numbers can’t really be considered a reliable indicator of autism prevalence in California. What I found interesting is how the conversation steered itself to both fears that the decreasing numbers would be used to cut needed services, and the explanation that changes in the way the services are being delivered actually accounts for the downward “trend.”

As ever, we can count on one issue to unify all parents of ASD kids: the less-than-adequate delivery of services, particularly by our schools. I wrote before about a positive change of attitude we encountered in our local school system, but attitude doesn’t get the job done. The problem is getting real assistance to the teachers and aides on the front lines.

The universality of this problem was underlined recently by an article from across the big pond. The Scotsman reported on a study by Glasgow University to assess the implementation of a mainstreaming policy. That study showed that “nearly a third of local authorities are having difficulty including children with special needs in mainstream secondary schools.” Of course, that should not have been a surprise considering that “fewer than half of Scotland’s councils had carried out the necessary preparatory work in order to implement the policy effectively.”

The frightening part of the Scottish report was its drawing a link between an increase in the numbers of autistic students and a rise in “indiscipline” in the classroom:

The report said: “Children on the autistic spectrum may exhibit behaviour that is incongruous and challenging, and which severely disrupts teaching and learning.

“It is possible that the perceived rise in the incidence of challenging behaviour in schools, and indeed in the incidence of social, emotional and behavioural difficulties, is related to the reported increase in the number of children on the autistic spectrum.”

One council official told researchers that the worst part of the mainstreaming policy was the “insufficient recognition of the challenge facing schools in dealing with behavioural issues”.

The article also cited a recent report by the General Teaching Council for Scotland that made a similar link:

Teachers said they were not given enough support to deal with pupils with behavioural difficulties, and warned that some of the indiscipline displayed by children with special needs affected the learning of their classmates.

Sadly, the schools seem to be looking on the problem as a failing of autistic children rather than a failing to address the needs of autistic children who are being mainstreamed. Still I was struck by the Scottish teachers’ insistence that much of the problem lay in inadequate support.

Inadequate support is something my son’s teacher, aides, and principal understand all too well. And their situation is not unique; I hear similar complaints from nearly everywhere. Our teachers are simply overwhelmed with the challenges presented by autistic students.

That prompts me to ask: why are teachers suddenly overwhelmed? Did teachers suddenly get stupid? Or has there really been either an increase in the numbers of autistic children entering our schools or a qualitative leap in the severity of autism in students?

THE CALIFORNIA NUMBERS

Ginger has an interesting post about the latest California numbers, and it seems like the downward trend continues. I say “seems” because the nature of the statistics kept by the California Department of Developmental Services limits their value, as is discussed by Ginger in her post and in the comments. A well-designed epidemiological study might shed more light on whether we’re seeing a real trend (although epidemiology is a poor indicator of causation). Unfortunately, we have yet to see a well-designed study in California or anywhere else.

What makes the California DDS statistics so interesting is that -- unlike most of the epidemiological studies we have seen in the past -- these numbers compare apples to apples on a quarter-to-quarter basis. So while the new report doesn’t provide any answers, it definitely raises the question of what may be causing the apparent trend.

While the rest of us shout out that the California numbers mean nothing (wrong) or that the numbers prove a drop in clinical cases of autism after the decrease in thimerosal’s use (equally wrong), perhaps someone can figure out a way to tell us what we really want to know.

THE RUSH TO JUDGMENT REVISITED

Soon after the death of Abubakar Tariq Nadama, I wrote about the rush to judgment that was going on by both sides of the chelation debate. There were those that wanted to blame the medical establishment for not fully supporting the admittedly experimental treatments many of us use. On the other side, many proclaimed that the tragedy proved that chelation -- in any form -- was inherently dangerous and anyone who said anything at all positive about such procedures was an accomplice to murder.

What I said back then was:

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.

Unfortunately, those questions remain.

In the last couple of days, the Pennsylvania media’s coverage of the release of findings by the Allegheny County Coroner concerning the Nadama case. The Pittsburgh Post-Gazette reported the following:

The manner of death of Abubakar Tariq Nadama, of Monroeville, has been listed as accidental while the investigation continues.

The findings released by the Butler County coroner’s office don't say whether the treatment itself is dangerous or the child died from the way the treatment was administered.

In layman’s terms, the administration of ethylene diamine tetra-acetate, commonly known as chelation, resulted in a lack of oxygen to the brain as well as irreversible heart damage, said Allegheny County Deputy Coroner Ed Strimlan.

The Allegheny County morgue conducted the autopsy on the child at the request of Butler County Coroner Bill Young.

“We determined there’s a direct correlation between the EDTA and the lack of oxygen to the brain and the heart muscle damage. It’s a total package, based on the autopsy, the histology [tissue sampling] and the toxicology [blood sampling],” Mr. Strimlan said.

Note that the coroner’s report does not state any opinions on the efficacy of EDTA chelation, nor does the media give any details about the manner in which Dr. Kerry performed the chelation prcedure.

Despite the lack of what I would consider pretty important information, a couple of bloggers I have respectfully disagreed with in the past, but both of whom I have a relatively cordial relationship with, have regrettably restarted the parade of anger.

Kevin Leitch had this to say:

Now we know for sure that Chelation did play a role in a young boys death -- a boy who’s dead solely because he was autistic -- I invite commenter’s from an anti-vax, anti-thiomersal, pro-chelation perspective to call for investigations into Dr Roy Kerry under who’s treatment Tariq died and to call for Rashid Buttar to exercise more care.

Okay Kev, you’re on. I’m not sure whether I fit into any or all of those categories, or that those categories are even relevant. Talking about vaccines or thimerosal seems a little off-base because this young man was apparently being chelated for lead rather than mercury. Susceptibility to lead that can arguably aggravate autistic symptoms, may -- and I emphasize the word “may” -- be related to immunological problems that originated with mercury in vaccines, but the connection is indirect. Moreover, I do not advocate any particular therapy because each child’s condition is too unique for there to be a one-size-fits-all protocol. But inasmuch as I’m usually thrown into those groups, what the heck, I’ll issue the calls.

I hereby call for a complete investigation into the circumstances surrounding the treatment of Abubakar Tariq Nadama by Dr. Roy Kerry. We need to know exactly what was in that IV. We need to know what protocol was being followed. We need to know what other factors were present in the patient’s history that might bear on what happened, and whether Dr. Kerry paid enough attention to any such factors. Until we know, however, we’re all just talking though our hats.

And I’ll go even farther than asking Dr. Buttar to exercise care. I call upon every doctor who comes near our children to exercise the highest degree of care humanly possible. But that really has nothing to do with whether chelation should be considered as an acceptable protocol; rather, that call is for practitioners and parents to understand what needs to be done to perform any and all procedures, including chelation, safely.

The other blogger I mentioned was the renowned skeptic, Orac, who was, not surprisingly, more pointed in his post:

No doubt chelation advocates will cry foul, but it looks as though the autopsy definitely indicates that chelation therapy killed the boy. Given the circumstances of the boy’s death, it’s pretty obvious that the cause was almost certainly hypocalcemia due to EDTA leading to cardiac arrest. At the time, I was afraid that the autopsy findings might not reflect EDTA as the cause of death, mainly because deaths from sudden cardiac arrest due to acute electrolyte abnormalities don’t always produce concrete findings that let the pathologist pin down the exact cause. Such a result would have given the chelationists an “out” to claim that it wasn’t the EDTA that killed Tariq. Fortunately, that didn’t happen in this case. Too bad the parents are highly unlikely to sue Dr. Roy Kerry, the ENT doctor turned alternative medicine practitioner, because he wouldn’t have a prayer of winning a malpractice suit against him. (If doctors in this country can be sued and lose for bad outcomes that aren’t their fault, one hopes that someone like Dr. Kerry can be sued for bad outcomes that are his fault.) Maybe a big settlement or a big malpractice judgment against one (or, preferably more) of these autism chelationists would be what it would take to cool their love of this particular ineffective autism therapy somewhat.

I don’t want to argue semantics with Orac, but saying it was chelation that caused this death is way oversimplified. There are so many methods of chelation that the real issue is what was it about this particular instance of chelation that caused the problem.

Let’s focus on IV-EDTA. Among those practitioners using it to chelate for lead in autistic patients, there is a difference in opinion as to whether a push or a more gradual drip is more appropriate. But the one thing nearly every doctor performing the procedure agrees on is that Calcium EDTA should be used rather than Disodium EDTA. This is not exactly news, it has long been known that using the latter can lead to fatal hypocalcemia.

There have been many unverified rumors that Dr. Kerry was using Disodium EDTA rather than Calcium EDTA. I hate to rely on rumors, and with various legal and administrative investigations pending, the facts are not likely to be made public any time soon. That being said, the use of the wrong substance is the most obvious explanation for what happened.

If Dr. Kerry did indeed use Disodium EDTA, the problem is not with the protocol; the problem is a doctor who didn’t follow the protocol. It would be a matter of negligence -- medical malpractice in other words -- rather than a procedure being unreasonably dangerous per se.

If Dr. Kerry made such a basic error as using Disodium EDTA rather than Calcium EDTA, he would, as Orac says, be subject to a lawsuit. (It may be a little off-topic, but I can’t help but observe that Orac’s reasoning that liability concerns may help deter malpractice is similar to the best argument against eliminating liability for vaccine manufacturers.) The choice to take private legal action, however, lies with the Nadama family, and not with Orac or me. Discussing the relative pros and cons of filing a lawsuit would take far too long. I can only trust that Dr. and Mrs. Nadama will make the right choice for their family.

Whenever we discuss personal experiences that lead us to believe in a connection to particular toxic insults, like thimerosal in vaccines, live viruses, or lead exposure and the onset of autism, or when we relate positive experiences regarding biomedical treatments, the response is often that the plural of anecdote is not evidence. It’s funny how the same people that shout out that mantra are now willing to base their argument about the safety of a class of procedures on a single incident.

In an exchange of emails I had today with our friend, Mary Webster, she raised an analogous situation of a transplant surgeon who failed to compare the blood types of the recipient and donor. That failure was fatal to the patient. The failure to follow the simplest and most basic of procedures does not mean that organ transplantation should not be preformed in appropriate cases, but it does underline the need to follow all the right procedures. I think that’s a pretty apt analogy.

I truly hope that the whole story will come out someday, and that we can all learn something. For now, though, we should all resist the urge to pass judgment.

SOME CANDLES CAN’T BE EXTINGUISHED: THE LEGACY OF LIZ BIRT

The other evening, members of the autism community were encouraged to light candles and observe a moment of silence in memory of Liz Birt. Judging by the buzz on the internet that evening, a lot of candles were lit.

Candles carry such a powerful symbolism, even apart from the obvious religious imagery. They remind us of the light someone has brought to a world sometimes shrouded in darkness (and within the context of Liz Birt and autism, by darkness I mean the lack of attention given by the rest of the world and not the condition of autism). A lit candle may also symbolize the fire that true leaders may ignite in the rest of us.

I did not have the privilege of knowing Liz Birt, so I cannot speak for her as to what she would like her legacy to be. But I think she would be proud to know that she inspired people like Mary Webster and Lenny Schafer.

Mary is one of the people my wife and I have gotten to know since falling into the world of autism. Mary is articulate, dedicated, and she is determined to heal her son. The death of Liz Birt, who she never met, has moved Mary to lift her voice. She sent us a copy of an email she wrote to Dan Olmstead, the journalist who is behind the “Age of Autism” series, along with the photo that appears at the top of this post. Mary also shared some thoughts on what inspired her to write Mr. Olmstead in the first place.

What constitutes a hero or a role model in this country is something I’ve been thinking a lot about lately. (Also, what attracts our collective -- and the media’s -- attention.) The year in reviews I saw were focused on Tom Cruise jumping on Oprah's couch and the Runaway Bride from Georgia. It’s really alarming!

There’s been some discussion on the EOH and CK2 boards lately about Oprah and Bill Maher and attracting the attention of celebrities to our cause. Maybe I’m a dope, but I don’t think that's the answer, really. Do we want to live in a society where an issue MUST be addressed on a certain talk show or touted by a celebrity to facilitate social change? Gads!

So, with that in mind, I sent this message to Dan. It’s a bit like preaching to the choir, but he’s a good listener and somehow I don’t think Brian Williams is really interested in what I have to say, do you?

Peace,
Mary

P.S. This breaks my heart and I didn’t even know her.

* * * * * * * * * * * * * *

Dan,

This is Matthew Lopez. He’s 11 now, but was nine years old when this photo was taken. He doesn’t speak and has begun having seizures. Matthew’s fearless mother, Liz Birt, has been fighting for the truth for Matthew and other children like him for years. She died in a car accident recently.

If a tree falls in a deserted forest and no one is around to hear it, does it make a sound?

Now that Liz is no longer able to speak for Matthew, will anyone hear him? Liz could hear him, even though he could not speak.

Tom Hanks is an actor. Michael Jordan is a basketball player. George Bush is the president of the United States.
Liz Birt was a hero.
Mary

That’s the impression Liz Birt left on people like Mary Webster and me: people who never had the chance to really know her, but who had a little more hope in their lives because she cared.

Considering the impact Liz’s death had on people who never met her, how much harder has the last week been on those who were in the trenches with her? Lenny Schafer knew Liz as a friend. In a recent post in the Schafer Autism Report, Lenny told us about the funeral for Liz, and he gave us a glimpse into the passion with which she advocated for our kids.

“How are you doing, David?” I asked as we both walked up the stairs to the cemetery. Before he could answer I added, “Stupid question, huh?” David Kirby and I were both there amongst others in Kansas City today for the funeral of our friend Liz Birt. "It's still nice that you asked,” he answered. His face answered the rest of my question, reflecting back my own. I had to cast my eyes away.

From Liz Birt:

November 3, 2005

Dear Senator Enzi:

. . . This past summer I spent over 300 hours preparing a detailed memo for your staff in order to assist them in evaluating the role that our federal health agencies have played in the use and promotion of use of vaccines containing a known neurotoxin, thimerosal. I spent hours with your staff and arranged for many key scientists to present information to your committee.

I have been told that the investigation is ongoing but I urge you to make this a priority. Just today, a paper authored by Dr. Thomas Burbacker, an associate professor in the Department of Environmental and Occupational Health Sciences at the University of Washington’s School of Public Health, was released by Environmental Health Perspectives, a peer reviewed publication of the NIH, demonstrating in primates that ethyl mercury in the form of thimerosal is far more toxic to the brain than methylmercury. The CDC is now encouraging everyone including babies and pregnant women to get flu vaccines that contain thimerosal, a known neurotoxin. This is at best reckless behavior on the part of our public health officials.

To me it is immoral.

Fellow Californian autism activist Rick Rollens and myself arrived the day before on a direct flight from Sacramento. Rick was a good friend of Liz’s and he had called me just a few days earlier to offer his frequent flyer tickets to me for my fare out there and back. As a single parent, my attention this time of year is split between taking care of my children, producing a daily autism newsletter and fighting off the dead of winter blues in social isolation. Only now, there was a dead dear friend, too.

We arrived at the Kansas City airport early Wednesday afternoon, only there was almost nobody else there. The airport was so empty and quiet, it seemed like it was closed. We picked up the rental and drove our way a half hour into town to the Sheraton. Almost no traffic and no pedestrians. “Did some neutron bomb go off around here or something?” asked Rick, “where is everyone in this town?” I answered, “maybe we’re in the twilight zone.”

Liz continues to Senator Enzi:

I have spent the majority of my professional time since 2000 working on the issue of whether or not vaccines are related to the epidemic of autism that is plaguing our country. I have been hopeful that our federal government would take the lead in investigating this issue. I spent many hours reviewing documents provided by our federal health agencies and pharmaceutical companies relating to this issue when I was on staff for the House Committee on Government Reform and as counsel to SAFEMINDS. What I found was shocking. After seeing the text of Senate Bill 1873 I no longer have faith in our elected officials in Washington.

Rick Rollens is one of those paradoxical guys who is socially and politically popular, yet is never completely comfortable at social gatherings. Funerals have to be way down on his list of public functions to attend. Only his love for Liz could get him to be there. Rick’s political life has made him a lot of friends. From my newsletter publishing, I know a lot of people. Out of all of them between us, we agreed that only a handful are special angels. And now one is gone. The loss is immeasurable.

Liz continues:

The cost to society of vaccine-induced illness, especially autism, are enormous. We have a tidal wave of children who are neurologically impaired in this country and no one in Washington is doing anything productive to find out why. In addition, autism is now being diagnosed in huge numbers in developing countries where American pharmaceutical companies have been shipping thimerosal containing vaccines. I recently received information that China may have as many as 5 million children with autism and that this is a new disorder to that country. What will the world say about our nation when the truth comes out?

“Let’s skip the Rosary,” I suggest. The viewing and funeral are enough for me. Rick agrees. “We are here to show support for her family as well as to grieve for ourselves,” explains Rick. “Yes, but I don’t think they'll need our support at the Rosary.” We both rationalize our decision; I’m Jewish and Rick’s not Catholic. Neither of us knew exactly what was the Rosary was anyway. But we knew Liz wouldn’t mind. Neither of us could remember her ever mentioning the Rosary when she was alive. Neither of us knew she was Catholic. But we both knew she was a saint.

Liz concludes to Senator Enzi:

It is time that federal elected officials get in touch with the people who elected them to office. There is a huge disconnect between what goes on in Washington and what is happening in our communities. I truly believe that the solutions to this problem will come from the individual states who are shouldering much of the burden of this epidemic. It will only worsen as these children age and become dependent on the states for services. When the public realizes what has happened they will vote those responsible out of office. I believe in democracy and justice. In the end historians will write that in the case of the “thimerosal generation” the coverup was far worse than the crime.

The day before Lyn Redwood called me to tell me Liz was gone, I had rented the movie “Million Dollar Baby.” The Four Academy Awards! rating could not pierce my mid-winter’s night funk. Big deal. A cliché boxer movie with a gender-bender twist for a gimmick. Have the leading male role cast as an asexual female who was not too pretty and not too butch. The stupid novelty successfully bedazzled the public and the critics, I harrumphed to myself.

Liz was hit broadside by a small truck in a car wreck outside Aspen Colorado. “Liz never revived before she died at the hospital,” explained Rick. “They didn’t know until she got to the hospital that her neck was broken from the impact.” The timing and parallel to the movie was too spooky: a hero struck down in the prime of her career.

Mary Webster and Lenny Schafer had different levels of connection to Liz Birt, but they both used the same word to describe her: hero. It’s a word that we bandy about far too often, using it to describe actors whose performances we admire or athletes who make us cheer. On occasion, though, we find a real hero who inspires us because she chooses not to take the easy road; because she fights for the common good; because she leaves the world a better place. Real heroes inspire us to light candles. And that’s quite a legacy.

ART TO CURE AUTISM

One of the nice things about the internet is that you don’t have to actually meet people in order to make their acquaintance. Sometimes it just takes the exchange of a couple of comments. In response to my last post, Hal Betzhold left the following comment:

Wade,

Hope you and your family have a fantastic new year! You and my daughter, Amber, will now be happy. Our blog is up and running! I want to thank you for your blog. My wife and I have found it enlightening and inspiring. It’s great to hear a voice of reason. Check out our blog; we’d love to hear from you.

Well, you just gotta know there’s a story behind that one

Like a lot of bloggers, I like to take a look at the referral list I can access through Site Meter to see how people find this site. It’s fascinating to see the search terms that triggers a good Google hit, although I can’t say that I’ve had any of the truly weird searches leading folks here that other bloggers have discovered. I also enjoy finding out what pages that link to mine are providing hits. Not long ago, I came across a hit that originated from Art to Cure Autism, and I had to check out what kind of a site had such an intriguing name.

What I found was a site that was not yet fully up and running, but it had a great look. There was one test post, complete with a couple of posts from a young lady named Amber, imploring her father to get with the program and start blogging. I couldn’t resist seconding that motion. And several days later, I was delighted to see Hal’s comment. I immediately went to the site, and I’m happy to report it is well worth a visit.

Hal Betzhold is an artist, who lives with his wife, Linda, their 12-year old daughter, the aforementioned Amber, and their 10-year old son, Beau. Beau is on the spectrum, and he is the reason for the blog. As Hal writes:

Like many children of this epidemic, Beau is a hero. In his short life of only ten years, he has had more adversity and hardship than many people ever see. His world has often been a place of confusion, frustration and physical pain. Like most heroes, Beau faces each day with the courage and determination to be and do the best he can. Many times people have asked me or my wife, Linda, “How do you guys do it? You must be special people to be able to deal with your son’s illness.” The truth of the matter is we don’t feel special at all. There are many times that we find ourselves discouraged and exhausted, feverishly praying that Beau’s autism would just disappear so we can get our lives back. What keeps me answering the bell, no matter what round it may be, is my personal hero, Beau. How do we do it -- with the inspiration of the bravest ten year old boy I know. How do we not give it everything we’ve got?

Those bold words -- and the use of the “C” word in the blog’s name -- will likely draw fire from some quarters. As for myself, however, I admire this family’s spirit, their determination, and their words. And make no mistake about it, this blog is a family project. For the first couple of posts, Hal obviously had a little help from Linda. Those posts include a wonderful personal remembrance of Liz Birt.

But don’t get the impression that Hal’s sitting back and letting Linda and Amber do all the heavy lifting. The site includes several pieces of Hal’s art. For a modest sum, prints are available, with all of the proceeds going to help defray the costs of Beau’s biomedical treatment (sounds like they’ve gotten the same response from their health insurer we’ve gotten).

Art to Cure Autism is clearly a family project: a family project born in love. I am happy to have made the acquaintance of this family, and I look forward to getting to know them a little better in 2006.

Welcome to the bloggosphere, Hal, Linda, Amber, and especially Beau.