Indisputable Love; Arguable Conclusions · 2005-09-04 21:00

On August 20, the Savannah Morning News published a lengthy article, Bridging Autism’s Distance, profiling Generation Rescue representatives David and Kristi Taylor, recounting their conclusions about autism and its causation, and describing the many biomedical interventions (including chelation, GFCF diet, hyperbaric oxygen therapy, and nutritional supplements) which they have chosen for their autistic child.

I submitted the following letter to the paper on August 26.

The Taylors’ love for their son is indisputable; their generalizations about autism are arguable. David Taylor has publicly stated, “There is no such thing as autism. Our children have heavy metal poisoning. Once you get the poison out, your child recovers. Simple as that.”

Autism is not so simple. While some individuals may experience vaccine reactions, little evidence supports assertions that increased diagnoses result from rampant “mercury toxicity.”

Autism manifests over the lifespan in all areas of functioning. Autistic cognitive traits persist after remediation of debilitating health problems. Many mistakenly believe that autism entails arrested development, rather than atypical development—delayed in some areas, advanced in others. This impression benefits practitioners like Dr. Jeff Bradstreet, who markets “autism cures” with sales pitches couched in emotional, religious language. Parents who make substantial investments in chelation and experimental therapies often discount the likelihood that their children might gain skills over time in the absence of such therapies.

Although some parents report encouraging results from chelation, the recent death of a Pennsylvania boy during intravenous chelation gives compelling reason to be alarmed about its potential dangers.

Journalists’ reluctance to critically examine anti-thimerosal campaigners’ claims results in increased willingness by parents to put all children at risk of infectious disease by refusing to vaccinate their own, and increased temptation to subject autistic children to expensive, unproven procedures. Journalists’ failure to seek input from autistic individuals, or from parents who do not attribute their children’s autism to poisoning, puts the majority of autistic citizens and their families at risk of continued marginalization. Many autistic people are offended by stigma-perpetuating assertions that they are “toxic.” Nationwide preoccupation with this campaign diverts attention from the need for educational, housing, employment, and anti-discrimination initiatives, and other issues affecting the quality of life of all autistic citizens and their families.

Comments


  1. You write shortly but truely: Yes, all of our parents’ love for our kids is “indisputable” but presenting autism as “heavy metal poisoning” and, indeed saying, “there is no such thing, “is not to see what we are dealing with, what autism is. The Evidence of Harm author has just such an absence of understanding of what autism is. kc — Kristina Chew    2005-09-06 22:01    #

  2. A few notes from an Aspie biochemist who works in a law office:

    1) Heavy metal poisoning is a disease, not just a difference. Chronic poisoning by heavy metals can cause a variety of physical symptoms, some of them potentially life-threatening. In those cases in which laboratory tests confirm excess levels of heavy metals, the condition should be treated. The issue here is not neurodiversity, it’s poisoning.

    2) However, mercury poisoning should not be presumed to be the culprit in all cases. Some of us are just plain different (I include myself!). Mercury poisoning should only be treated where tests show it to be present.

    3) Even if heavy metal poisoning, mercury or otherwise, causes some of the symptoms of autism in some individuals, treating it probably will not render the individual “normal”—unless mercury is the only cause and the poisoning is treated at a very young age. Once neurological development has proceeded in an “non-average” fashion during the first few years of life, most of the results are permanently fixed. Simply removing the cause won’t reverse the neurological changes.

    4) Even where chelation is called for, it should only be done under careful supervision by people qualified to do it. Chelating agents aren’t entirely specific for poisonous metals. For instance, while EDTA will bind mercury, it will also bind iron, copper and zinc—metal ions essential to life. Chelation must be done slowly and carefully. Otherwise, the results can be destructive. — Ian Johnson    2005-09-07 13:47    #

  3. To expand on what Ian said – testing for heavy metal poisoning should be done by someone is capable of recognizing when heavy metal poisoning is absent.

    In other words, if you go to a doctor who “specializes” in diagnosing and treating “undiagnosed metal toxicity” (or other such rot), don’t be too surprised when they diagnose your problems as “heavy metal toxicity”.

    “To the man whose favorite tool is a hammer, every problem looks like a nail.”

    If you want to see if you or your child are “metal toxic”, go see a pediatrician or internist. Even if they don’t believe that you are likely to have heavy metal poisoning, they can usually be persuaded to order the proper tests, if you approach it as them humoring you rather than as an outraged parent or patient demanding the ridiculous. After all, real heavy metal poisoning is getting to be extremely rare.

    Also, if you are disappointed when (not IF – when) the tests show that you and/or your child are not suffering from heavy metal poisoning, you need to ask yourself, “Why am I disappointed?”

    Prometheus. — Prometheus    2005-09-07 23:54    #

  4. Further to Prometheus’ first point, I once had a primary care physician who was a nephrologist as well as an internist. He had a diagnostic tendency to look at things in terms of kidney function, although I was never shown to have any kidney issues. All of my other PCPs have been internists without another speciality, and so did not have any particular axes to grind. Just another example of hammers and nails. — Dave Seidel    2005-09-08 06:52    #

  5. Kathleen,

    I appreciate the measured and respectful tone of your letter. David Taylor, a man for whom I have the greatest respect, deserves no less, just as you deserve a respect you sometimes do not get from the biomedical community.

    What is now being diagnosed as ASD is indeed a complex puzzle, and I am one who believes heavy-metal toxicity plays a role. Therefore, the biomedical approach many of us use includes chelation. I don’t think it’s useful to argue over the semantics of whether we are searching for a “cure.” In fact, we are simply trying to alleviate dysfunction in our children. If that happens, I fully expect that my son will remain genetically what he is today, and if that leaves him labeled as “autistic,” I am fine with that.

    The fact that we have seen a tragedy result during a procedure that seems to have been designed to chelate lead rather than mercury does not necessarily imply that all chelation is unsafe. As the matter is investigated—and a full investigation is certainly warranted—we will find out whether the death of the Nadama’s son resulted from an inherent problem with chelation or if it was due to improper procedures (i.e., malpractice per se). Until we have the results of the investigation, we are all speaking prematurely.

    Finally, I am a little amused that you find journalists give the anti-thimerosal and biomedical communities a free pass. We tend to see more of a bias against us, particularly by so-called science correspondents who treat the whole question as being settled beyond dispute on the basis of a few flawed epidemiological studies, and who completely ignore the biological studies that, while preliminary, indicate a plausible link between environmental insults (including, but not limited to, thimerosal) and the development of autistic symptoms. — Wade Rankin    2005-09-12 23:48    #

  6. Thanks to y’all for stopping by. I’ve had too much going on in my life these days, and far too little time, hence the delay in responding to some of your comments.

    Kristina, I agree with you completely. In our household, we’re fortunate in that our ASD offspring doesn’t have the kinds of health problems that affect so many other ASD folks, or any more health problems than anyone else in the household. Our experience includes nothing that would lead us to suspect any kind of “poisoning,” mercury or otherwise. We enjoy really solid, positive relationships, and she does very well in school, thanks in large measure to all of us understanding her differences and needs. An autism spectrum diagnosis was the key to gaining that understanding, as well as the recognition that in our family’s case, the apple didn’t fall all that far from the tree.

    As Ian says, some of us are just plain different. As I like to say, God or nature or whatever has many different ways to build a brain.

    Prometheus’ observation makes a lot of sense—that is, that “testing for heavy metal poisoning should be done by someone is capable of recognizing when heavy metal poisoning is absent.” I would think, too, that the interpretation of such a test should come from a competent professional not already wedded to the idea that both high and low levels of any toxin might constitute evidence of toxicity. That has always seemed to me to be a bizarre assumption rather than a proven fact; the literature I’ve read that supports the assertion that some ASD folks are “excretors” and others are “non-excretors” leaves me skeptical. But I’ll leave the detailed debate on that subject to the scientists.

    Wade, I’m relieved to know that you’re back home safe. I wouldn’t presume to contest individual families’ choices regarding treatment of their children’s health problems; these are private decisions, and each family has its own set of information and values that enter into their decisions. If a family has evidence that their child does in fact have a toxic level of metals in their system, then of course they should do what is necessary to fix that problem. But per above, the quality of such testing, and testers’ freedom from bias, is crucial. I don’t think it’s appropriate for doctors to unilaterally expand the definition of “autistic spectrum disorder” to encompass GI and immune problems that also affect neurologically typical people. I seem to recall that there was one study of GI problems in autistic children where the author acknowledged that a number of the autistic subjects also had neurologically typical siblings affected by the same problems. (If anyone can give me a solid citation on that one, that would be great.)

    I am indeed a stickler on semantics. Just as it’s important to be precise in the language of law and contracts, precision is appropriate when one is communicating with and about people’s cognitive characteristics—especially people on the autistic spectrum, who are often precise and literal by nature. When you’re talking about people’s mental states, semantics gets personal. A word like “cure” is excessively broad and unspecific, and has a solidly-established connotation of eradication. That does not mean that those who use the term “cure” are advocating for eradication of autistics, but the connotation of “eradication” remains. (See my response to Boyd Haley’s response to the Petition to Defend the Dignity of Autistic Citizens where I discuss the dangers of attempting to redefine short words with long histories.) Given the fact that there are more precise alternatives such as “alleviate dysfunction,” I think that it’s a far better to use such alternatives, rather than persist in using shorthand that has the potential of creating unnecessary conflict.

    I’m going to take the liberty of quoting from a post made to another list about six months ago:

    “I certainly don’t agree with the perspective that all traits associated with autism, no matter how dysfunctional they are, should be regarded as “autistic gifts.” But that does not automatically imply that the way to alleviate those dysfunctions is to try to “cure autism.” I think it would be better to stop thinking about how to “treat autism” and start thinking about how to “treat autistics.” This would involve a recognition that autistics are indeed more susceptible to certain pathologies than “neurotypicals” are (and, conceivably, less susceptible to others), just as, for example, males are more susceptible to certain pathologies than females are, followed by attempting (as we do with sex-different pathologies) to address the pathologies themselves…”

    All I am inclined to say about Tariq Nadama’s death at this point is that we will all eventually learn the outcome of the investigation into what caused it.

    My kvetch with the press primarily has to do with the popular media. It seems to me that an inordinate number of the recent autism-related stories in local and regional newspapers discuss the controversy over thimerosal and vaccines, to the detriment of other relevant subjects. I wish there were as much attention paid to the need to develop appropriate educational strategies, and teacher education programs, and alternative communication options, and community housing and support options, and workplace humanization, and anti-discrimination initiatives, and all the other supports and services needed to enable a fulfilling life and as much independence as possible for folks on all points of the spectrum, no matter how distinguishable or cosmetically indistinguishable they might be. — Kathleen Seidel    2005-09-13 17:51    #

  7. Kathleen,

    I am delighted to say that I find far more in your last comment to agree with than I can disagree with.

    Biomedical treatments are medical procedures and should not be used unless the parent is convinced they are warranted. I have a little more faith in many of the labs out there than you do, but I certainly agree that one should conduct due diligence with any medical provider they use for a child.

    And I certainly agree that my complaints with the press are more pertinent to the national press than with local and regional media. I also agree that the ideas espoused by the neurodiversity community deserve more exposure in the press.

    I’m not sure my home turf is going to be a pleasant spot to visit any time soon, but let me know if you ever get down this way. I’m sure we can find an agreeable spot to toast our commonality. — Wade Rankin    2005-09-13 20:31    #

  8. That would be nice to see, two eminently rational and respectful persons getting together for lunch and conversation. I hope it happens sometime, as it would bridge the gulf between opposing groups. — Clay    2005-09-19 17:01    #