• Fri, May 9 2008

The Autism Treatment Subculture

That’s how Dr. Steven Novella refers to various alternative medical practices used by parents on their autistic children in the May 8th Neurologica blog. Among those practices is chelation, in which medications are administered to remove “heavy metals” from a person’s body and thereby to “detoxify” his or her system. Dr. Novella discusses the recent dropping of charges against Dr. Roy Kerry, who was accused of causing the death of 5-year-old Abubakar Tariq Nadama. In 2005 Nadama went into cardiac arrest after undergoing chelation therapy with Dr. Kerry. Dr. Novella not only points out the dangers of chelation, but also considers why parents—desperate to help a child—-might choose such untested procedures and invest both dollars and hope in the “autism treatment subculture.”

Dr. Novella writes that the death of Nadama is a case of a doctor acting “out of his specialized area of training, something which is specifically noted to be unethical behavior in most state statutes dealing with the ethical guidelines for physicians [my emphasis].” Dr. Kerry is an ENT surgeon (ear, nose, and throat specialist). Dr. Novella continues:

Then – practicing a specialty for which he was not trained – [Dr. Kerry] decided to give a treatment [i.e., chelation] that was not indicated based upon a theory that is rejected by the consensus of opinion of actual experts in the relevant field. Such behavior can only be described as overwhelming (and deadly) hubris. Beware someone who presumes to know better than the experts in another legitimate field of study.

Chelation itself is based on a hypothetical theory about what causes autism, the notion that autism can be linked to vaccines or something in vaccines, such as mercury. It is not an approved treatment for autism and is, again, one of many alternative biomedical treatments that have been regularly referred to as “successful,” along with (to name a few), hyperbaric oxygen therapy, sauna therapy, holding therapy, the lupron protocol, and many others (such as this).

Hence the emergence of an “autism treatment subculture,” as Dr. Novella writes:

There is now a subculture of those who believe that they know better than the consensus of scientific medical opinion. This subculture includes private citizens who just want answers and either don’t trust the establishment or don’t like the answers they are giving, it includes lawyers who are happy to make money off the whole thing, journalists who are happy to make a career out of hysterically misinforming the public, and most alarmingly it includes doctors who are willing to practice unscientific and unethical medicine (for whatever reason).

Further, an infrastructure has arisen to support the whole enterprise. It’s like a separate health care system existing in fantasy land. Of significance to this case, there are labs that are happy to make money by providing worthless clinical tests to support the quack notion of the month. They either use tests that have not been validated, or that are virtually designed to provide false positive results.

Dr. Kerry, then, is “not an isolated case” and is rather “representative of a systemic problem in our society,” the public’s increasing adherence to a “treatment subculture” whose players may not only have questionable credentials, but who also may engaged in questionable tactics to “prove” their theories about autism.

Two individuals who are part of the “subculture” that Dr. Novella describes, and who are rather well-known (indeed, a bit notorious) in the annals of vaccine-injury litigation, are Dr. Mark Geier and David Geier. Over at Neurodiversity, Kathleen Seidel has written extensively and cogently about them and the “autism treatment subculture”; she has specifically discussed the dangerous effects of the Geiers’ “Lupron protocol” treatment on autistic children.

At the end of March, Seidel was issued a subpoena commanding her “to appear for deposition and document production in Rev. Lisa Sykes and Seth Sykes’ $20,000,000 personal injury lawsuit, Sykes v. Bayer (Case No. 3:07-CV-660, Eastern District of Virginia, Richmond Division).” The subpoena was issued by lawyer Clifford Shoemaker and was quashed in April. In her latest post, Seidel describes the response of Shoemaker “to the court’s April 21 Order to Show Cause regarding the omnivorous subpoena issued against [her] in the case Sykes v. Bayer.” Shoemaker, that is, has now filed a response to the quashing of the subpoena he issued against Seidel. According to the response, Seidel is said to

“‘…head a group’ that seeks to personally and professionally discredit Rev. and Mr. Sykes and ‘witnesses who have given support to the family’s positions’ — presumably Dr. Mark Geier and David Geier.”

Seidel’s public writing about autism and vaccines is alleged to be a “form of harassment and interference with business relations” and she is said to have received “direct or indirect assistance for ‘efforts to damage [the Sykes and their witnesses] personally for their participation in this lawsuit’ from Bayer Corporation.”

To set these accusations into context, Seidel writes about a lawsuit that was initiated two and a half years ago in noting that “this is not the first time that citizens [like her] participating in public debate about scientific matters have been accused of tortious conduct for persuasively criticizing Dr. and Mr. Geier.” She carefully details the circuitous narrative of the older lawsuit in which

“Dr. and Mr. Geier alleged that they had been defamed and otherwise harmed by the four co-authors and publisher of a medical research review that questioned the reliability of their epidemiological analyses.”

This lawsuit has been dismissed, as Seidel writes in Debate or Defamation?. But Seidel picks up on a pattern of responses among some proponents of alternative medical treatments for autism: Criticize their work and claims of “defamation” will be brought against you, while it is precisely “free and open debate” that is key to advances in science. (And here I thought we were talking about theories of autism causation and treatment and whether or not there is scientific evidence for them…….not whether or not anyone felt that their character was “damaged” by someone criticizing their work. )

One of Dr Novella’s observations about Dr. Kerry on the Neurologica blog is relevant in view of the legal back and forth that Seidel has been made part of, and that seems to be increasingly used—consider the case of Hannah Poling—in efforts to prove theories of autism causation. Writes Dr. Novella:

Conspiracy theories are used to deflect any criticism, any lack of confirming evidence, or the presence of any disconfirming evidence.”

Instead of simply standing up for the science behind their “Lupron protocol,” the Geiers filed a lawsuit. Instead of referring to studies and research about vaccines and autism, Shoemaker accuses Seidel of “harassment” and “interference with business relations.” Instead of strategizing how to provide for autistic individuals for their whole lives with jobs, housing, and services, much energy, dollars, and (digital) ink is devoted to proving or disproving theories about what might or might not cause autism.

In such an atmosphere, I guess we should not be surprised that treatments such as chelation are prescribed even though large scientific studies have not found them to be effective. In the name of (as Dr. Novella writes) “‘alternative’ ideologies and clever marketing under the banner of ‘health care freedom’” have we become too willing to be eternally “open-minded” about what to do to treat disease and, especially, to “treat” autistic children? Is it possible that there isn’t some magic panacea out there that will cure all of our children’s needs? Is it possible that autism is life-long and that rather than chasing after not only causes, treatments, and lawsuits, it might be best to help the individuals in front of us, every day?

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  • Morgan

    An incredibly well conceived and crafted post. Thank you.

    Most of the other parents I meet are trying some type of alternative treatment. I bite my tongue a lot. Science based approaches to treatment have regretably offered parents very little hope. Meanwhile, “responsible” advocates promote an atmosphere of fear, shame, guilt, and desparation.

    I personally can not suspend disbelief long enough to follow the herd down the alternative “medecine” path, but in the absence of good autism science, I do understand the lure.

  • http://autismnaturalvariation.blogspot.com Joseph

    Clearly, Shoemaker and his associates, the Geiers, are prone to relying on SLAPP lawsuits. The Seidel subpoena was not a lawsuit, but effectively it was a SLAPP.

    The intent is to chill dissent. It will be a sad day for freedom of speech if they were to succeed in that effort even a little.

  • http://club166.blogspot.com/ Club 166

    I think Novella’s identification of a subculture, with an attendant infrastructure built up to support it is spot on.

    This is much more than several misinformed parents and sloppy researchers. This is what happens when you combine scientific illiteracy with a culture used to instant gratification and greedy practitioners of all stripes eager to capitalize on both.


  • Regan

    Alternative medical subcultures have been around forever, but this one is marked by its visibility, some ability to be reimbursed (and the cost of funding pseudoscience costs everyone), the rapidity of information transfer via the internet, and I would almost say the bulk density of business interests associated with it, at least as represented by word of mouth and the internet.

    Autism is like the quack science jackpot.

  • http://www.autismvox.com Kristina Chew, PhD

    @Morgan…..thank you…….I think “lure” is a very good choice of words for the appeal of this “subculture.”

    @Club 166, I’d also say, ours is a legality and lawsuit obsessed culture, and the use of the law to intimidate and defame is especially troubling.

    @Joseph, Maybe we should start talking about the mercury police….

    @Regan, Yes.

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  • http://www.citizen.org Public Citizen

    For those who have been following the case of Sykes v. Bayer, we have an update. This is the case in which disagreement over whether mercury in medicines causes autism was turned into a discovery witch hunt. Kathleen Seidel backs her position regarding autism on a Web site devoted to issues involving autism, disability and other topics. Among other things, her Web site criticizes Lisa Sykes, who is suing Bayer and believes mercury does cause autism.

    Recall that on April 21, the court quashed an incredibly broad subpoena from attorney Clifford Shoemaker, who represents Sykes. Shoemaker did not just request that Seidel release her correspondence with Bayer; he also demanded all of her documents pertaining to the issues she has written about on her Web site, as well as all of her correspondence with attorneys, physicians, the federal government, non-governmental political organizations, religious groups, and scientific and academic boards. To make matters worse, Shoemaker tried to defend his discovery demands by accusing Seidel and Bayer of conspiring to defame Sykes.

    On Tuesday evening, Public Citizen, on behalf of Seidel, filed papers arguing that sanctions against Shoemaker were appropriate because the requests in his subpoena were irrelevant to the lawsuit against Bayer and “abusive and burdensome.” In its brief, Public Citizen cites the Supreme Court case Reno v. ACLU to support its argument that anyone can present “findings and conclusions” freely on the Internet if he or she so chooses, and argues that the use of discovery to harass a critic warrants sanctions. For more information, visit http://www.citizen.org/litigation/forms/cases/CaseDetails.cfm?cID=477.

  • http://www.autismvox.com Kristina Chew, PhD

    Thank you very much for this.

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