September 5th, 2007
The Brave Maverick Doctors
One the great legends in the world of autism therapy is that of the brave, maverick doctors who put their careers on the line by bucking “mainstream” medicine and offering cutting edge “alternative” therapies that are “curing” autistic children.
But is there any truth – even a small kernel of truth – behind this legend?
Who are they?
What kind of doctors become “Brave Maverick Doctors”? One source of information is the practitioner list maintained by the organization, “Defeat Autism Now! [sic]” (see also here). Looking over this list, you will notice that a number of these “Brave Maverick Doctors” are not even “doctors”, in the sense of having an MD or DO degree. A large number are “naturopaths”, some are chiropractors and there are a number that fit into the “miscellaneous” category.
Yes, I know that various state legislatures have allowed “naturopaths”, “homeopaths”, chiropractors and the like to legally call themselves “doctor”, but they’re not the sort of “doctor” you would go to (or should go to) with a bad cough, high blood pressure or an unpleasant rash. In addition, it’s not like these sorts of “doctors” have much to risk, career-wise, from “talking a walk on the wild side” of medicine. They live on the “wild side”.
But, if we confine ourselves to the MD and DO type of doctor, what sorts have decided to become “Brave Maverick Doctors”? Well, there are as many “types” of “Brave Maverick Doctor” as there are doctors who have decided to take that route. To rephrase the opening line of Leo Tolstoy’s immortal “Anna Karenina”:
Evidence-based doctors are all (relatively) alike; “alternative” doctors are each “alternative” in their own way.
That said, there are certain frequently-repeated motifs that are found in the “Brave Maverick Doctors”. The first motif is also probably the most common: the misfit.
Misfit “Brave Maverick Doctors” generally have a pattern of not thriving in evidence-based medical practice. Many of them have a history of failure in medical school (sometimes completing their studies in “offshore” medical schools) or in residency. Reading the curricula vitae, you will often see that they have completed only part of a residency (e.g. two years of an OB/Gyn residency which takes four years to complete; three years of a five-year surgical residency) or have “spread out” their medical school education over two or more schools.
Many of the “Brave Maverick Doctors” in the “misfit” category have spent some bitter years scratching a living on the margins of medicine, working in rural emergency rooms or as a general practitioner. Others in the same category, however, actually did finish residency training, only to find that they were unhappy doing what they had trained to do. When they actually entered evidence-based medical practice, they found the hours long, the work hard, the pay disappointing and the patients generally not as grateful as they were on Marcus Welby. At some point, these misfit “Brave Maverick Doctors”-in-training all found the way to overcome their malaise – they discovered “alternative” medicine.
This particular brand of “Brave Maverick Doctor” has nothing to lose by abandoning evidence-based medicine and going down the “road less traveled”. They had no career (or none they wish to return to) before they became “Brave Maverick Doctors” and stand only to gain more notoriety (and lots of free publicity) by deriding their one-time peers in evidence-based medicine.
In fact, it may give them a great deal of satisfaction to be more famous and more wealthy than their classmates who went on to be evidence-based internists, pediatricians and surgeons. Sic transit Gloria mundi.
Another common motif found in “Brave Maverick Doctors” is the academic iconoclast. These “Brave Maverick Doctors” come from an academic setting, where evidence-based medicine is the gold-standard (although this is changing). Frustrated with their inability to make their research peers see what is so plainly the truth, the iconoclast lashes out against “entrenched dogma”.
In reality, the reason the iconoclastic “Brave Maverick Doctors” are unable to persuade their peers is that they lack the data necessary to support their claims. In what the psychologists refer to as projection, the iconoclasts often accuse their peers of “arrogance” and “inflexibility”, when it is they who are being “arrogant” by assuming that they are right when they lack the data and “inflexible” by refusing to see that their claims are unsupported (and may, in fact, be wrong).
The career trajectory of the iconoclast is very dependent on whether they have gained tenure. If they have, there is little their institution can do to sack them. If not, they are frequently let go at the earliest convenience. Paradoxically, the sacked iconoclast usually has the most promising future – for a while. Their rise is often meteoric, as they are often, in the eyes of the media and their “fans”, seen as a “martyr”.
Their lack of supporting data is rarely noticed by the media, as most reporters – even science reporters – have no idea how to tell conjecture and hand-waving from real data. The public – on the whole no more educated about science than the reporters – sees only the poor individual who wants to tell them “…what they don’t want you to know”.
The fact that universities and regulatory agencies may not want the public to “know” these things because they are wrong never seems to occur to people. In a stunning demonstration of “reverse psychology” the very fact that “scientists” or “the government” have denounced their claims as “nonsense” convinces many people that they must have at least some validity. It often convinces the iconoclasts, too.
Recently, during the run-up to his hearing before the General Medical Council, Dr. Andrew Wakefield (an iconoclastic “Brave Maverick Doctor”), with no apparent sense of irony, uttered the following quote from Vaclav Havel:
“Seek the company of those who seek the truth, and run away from those who have found it.”
Considering that he has, for nearly nine years, insisted that he had “…found the truth…” about the MMR vaccine despite mounting data to the contrary and a growing body of evidence that his own research was flawed – not only ethically but scientifically as well – the use of this particular quote can only mean that Dr. Wakefield is encouraging his supporters to “run away”.
Yes, iconoclastic “Brave Maverick Doctors” are often not self-aware. But they have no motivation to be. Examining their actions can only lead to doubt, and doubt can only lead to trouble – so, they cannot examine their own claims and they cannot doubt. Their career depends on it
The Reluctant Hero
The final motif I will examine here is the reluctant hero. These are the “Brave Maverick Doctors” who end up in “alternative” therapies as a way to help their patients. Like most doctors, they received little or no education or training in critical thinking during medical school and are poorly equipped to see the flaws in the “alternative” therapies they employ. But, when they use these therapies, their patients report amazing, almost miraculous results. Or, at least, a few of them do.
However, since these doctors lack the skills to understand the placebo effect, regression to the mean, recall bias, etc., they are disproportionately impressed by the “successes” of the “alternative” therapies. They don’t notice the treatment failures – or give too little weight to them – and thus fail to realize that the “treatments” are no better than placebo.
I have met some of these reluctant heroes. They like to talk about their evidence-based medicine bona fides - their medical school education, their residency training, the years of by-the-book medical practice. They seem to think that this would put them beyond the reach of self-deception.
The reluctant hero “Brave Maverick Doctors” never completely break away from evidence-based medicine – they simply “complement” it with a little “alternative” medicine. They see this practice as “balanced”, but it’s a precarious balance. Still, they are not risking their careers, since few (if any) medical boards will go after a doctor for “alternative” practices – unless somebody gets hurt or killed (more about that later).
Risking their careers?
As you can see, the “Brave Maverick Doctors” aren’t risking their careers at all. Most of them have a much more lucrative career now than they ever had before they became “Brave Maverick Doctors”, not to mention the fame, speaking invitations, and general applause that they now get.
Cutting Edge Medicine.
What is this “cutting edge medicine” that the “Brave Maverick Doctors” practice? Well, it is usually referred to as “alternative” medicine – occasionally “complementary” medicine – by the “Brave Maverick Doctors” and their sycophants. But what does that mean?
When the media publish stories on “alternative” medicine, they tend to pitch the story as if the “alternative” practices were either so new that the research hadn’t kept up with them or so simple that “Big Pharma” couldn’t make any money off them. Oh, occasionally you’ll see a story about how somebody got hurt or killed by “alternative” medicine, but it’s usually accompanied by a statement from an “alternative” practitioner to provide “balance”.
What both the media and the public fail to appreciate is that “alternative” medicine – like “alternative” math or “alternative” plumbing – is a misnomer. It is not an “alternative” except in the sense that people can use an unproven, ineffective or unsafe practice if they so choose.
Now, “alternative” medicine apologists like to tell us that some practices once considered “alternative” are now “mainstream”. That’s why I like the term, “evidence-based” (instead of “mainstream”) and non-evidence-based (instead of “alternative”) – because it shows that these aren’t two equally-valid-but-opposite viewpoints; they are radically different realities.
Those few “alternative” therapies that have become part of “mainstream” medical practice did so because sufficient data (evidence) was amassed to support the claims that [a] they worked and [b] were safe. They went from non-evidence-based (not sufficient evidence of their effectiveness or safety) to evidence-based (sufficient evidence of their effectiveness and safety).
In short, medicine (and science) can be divided into two halves – that which has been shown to work and that which hasn not. And the half that hasn’t been shown to work can be further sub-divided into that which has been shown to not work (or not be safe) and that which needs further study.
So, the “Brave Maverick Doctors” are using “therapies” which either haven’t been adequately studied or (worse) have been studied and have been shown to be ineffective. Or, even worse, have been studied and found to be unsafe. There have been mercifully few deaths of autistic children due to the actions of “Brave Maverick Doctors” – yet – but that appears to be due more to luck than design.
In addition, many of the therapies promoted by “Brave Maverick Doctors” aren’t even remotely “cutting edge”. Homeopathy was once a “cutting edge” medical therapy…back in the late 1700’s! Unfortunately, the work of Amedeo Avogadro in the early 1800’s showed that homeopathy was nothing more than a placebo. In 1842, the physician Oliver Wendell Holmes delivered a series of lectures about homeopathy that were both scathing and terribly accurate. Their assessment of homeopathy is accurate even today. Yet, there are a surprising number of “Brave Maverick Doctors” in the DAN! practitioner list who proudly advertise their belief in this defunct nonsense.
Exactly how “cutting edge” is a “therapy” that was formulated in the late 1700’s and known to be nonsense by the mid 1800’s? Not very.
Beyond homeopathy – which has, at least, an historical interest – is the perseveration with therapies that have been studied and found worthless. Secretin therapy is a good assessment tool for the “Brave Maverick Doctors”, since it has been well studied (one of the few autism therapies that has) and found no more effective than placebo.
First proposed in 1997, secretin was extensively studied by a number of researchers, many of whom participated in a multi-center focused study of secretin in young autistic children with GI problems (the putative “most effective” group). On 5 January, 2005, the Repligen Company (which stood to make a lot of money if secretin were effective in treating autism) announced that they were ending the research program because the results were so poor. In the end, secretin was no better than placebo (except at causing side effects).
So, you’d think after all that, the “cutting edge” therapies of the “Brave Maverick Doctors” wouldn’t include secretin, right? Wrong! Secretin remains a very popular therapy among the “Brave Maverick Doctors” for reasons that remain somewhat unclear. Surely, if they were on the “cutting edge”, they would know when a therapy had “fallen off the edge”. But they perseverate in using secretin.
Could it be that they aren’t so “cutting edge” as they think?
But nothing matters if the “Brave Maverick Doctors” are curing autistic kids, right? And they are…or at least they say they are. Testimonials from parents and even videos are out there purporting to show “recovered” autistic children.
But where are the published articles? Where are the case reports? Why haven’t these “cured” or “recovered” children made more of a splash? After all, if the proof is right there in front of them, why don’t they show us?
In this Star Wars, YouTube, PhotoShop world of ours, people have become a bit leery of video “evidence”. Even grade-school children know that video can be edited to show whatever you want it to show. Not that the parents or even the practitioners would deliberately deceive us. But it is easy to imagine them saying, “Oh, let’s not show that bit, it’s not how he really is.” And, quite frankly, of the videos I’ve seen, I haven’t been too impressed by the level of “cure” or “recovery”. Most of what I see, even in the ones that give a “before” and “after” look, can be put down to growth and maturation. After all, autism is a disorder of developmental delay, not developmental stasis.
Next: Myths of the Autism Diagnosis.