"It's better to light a candle than curse the darkness"

Myths and Legends of Autism, Part 2

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.

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.

The Iconoclast.

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?

The Cure.

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.

 

 

Prometheus.

Filed under: Autism Practitioners, Autism Science, Autism Treatments, Critical Thinking

34 Responses to “Myths and Legends of Autism, Part 2”

  1. mike stanton Says:

    Batman had Robin. The Lone Ranger had Tonto. I look forward to reading about the real unsung heroea. Who are the faithful sidekicks of these brave maverick doctors?

  2. Joseph Says:

    Nice one.

    Another common theme that I’ve noticed recently is this idea that the “ancient wisdom” is better than double-blind placebo-controlled studies.

  3. notmercury Says:

    Excellent, as always.

    Still chuckling over this: “the use of this particular quote can only mean that Dr. Wakefield is encouraging his supporters to “run away”.

  4. Club 166 Says:

    Great followup to part 1. Nice summary of all the logical reasons not to follow those that promise miracle cures.

    I await part 3.

    Joe

  5. Skeptico Says:

    I like “Maverick Alternative Doctor” - MAD for short. Beats DAN.

    Yours is more intellectual though.

  6. old anon Says:

    This reminds me of some great discussions we had on your blog two or so years ago. So, went looking and found a little ditty I posted back then in reference to this whole subject. For old time’s sake, and the the sake of some other things as well, please allow me to repost this song to my former BMD (Brave Maverick Doctor):

    DOCTOR YOUR LIES

    Doctor your lies you’ve told for years,
    Must stop and end right here,
    Without hedging,
    Tell the truth before you go.

    You have done all you know how,
    To find profits where you can,
    Without helping,
    To heal children with your plan.

    Doctor, your lies …
    Tell me one last one.
    Did a spy,
    Tap your telephone for fun?

    ‘Cuz I have laid down for your cause,
    and now I have finally have to pause,
    I am hoping that the truth will set me free.

    ‘Cuz patients latch onto to some hope,
    But you dismiss them at door unless they bring you
    an “investor” on his knees.

    Doctor your lies,
    Tell me if you believe,
    What you say,
    Or is it all just so much greed?

    Doctor your lies,
    Now shed into the light,
    This is your price,
    For messing with my tyke.

    (originally posted in the reply section of Prom’s blog post:
    “Lost on the Moral Compass Course’).

  7. Vandychick Says:

    This is great stuff.

    I think your point about mavericks who are fired/reprimanded/fined attracting more followers is well taken. I was horrified to see a nurse practitioner at a major research hospital near me openly reading a copy of Kevin Trudeau’s latest book–at the front desk no less. I thought she was perhaps making fun of it, but sadly she thought he had some good points.

    Can’t wait for your post on diagnostics.

  8. prometheus Says:

    Mike,

    Great idea! But since most of these BMD’s are solo acts (more like Spiderman), there may not be too many “sidekicks” to profile.

    But the “unsung heroes” are probably the autistic children who suffer the therapies these BMD’s prescribe. They may not suffer in silence, but their suffering is generally unremarked.

    Although you may hear about how Dr. X (usually not a BMD - or at least not one currently in favor) “tortured” a child, the usual comments are about how difficult, embarrassing or uncomfortable the experience was for the parent. I shudder to think how many autistic children are suffering the torments of the damned at the hands of these “Brave Maverick Doctors”.

    Joseph,

    If you don’t mind, I think I’ll incorporate that into Part 4, “Therapeutic Myths and Misadventures”.

    Prometheus

  9. Steve D Says:

    Nobody, and I mean nobody presents these arguments as clearly, concisely, and properly organized as you do, P. As always, excellent work.

  10. Do'C Says:

    I love how “cutting edge” medicine seems to include “cutting edge” legal implications. Check this one out Prometheus.

    [link]

    Page 8.

  11. prometheus Says:

    Do’C,

    Oh. My. God.

    The legal angle was spooky enough - including how the doctor has so kindly enrolled the patient/parent in some “alt-med” support organization. But what was truly frightening were:

    [1] The medical history form that indicts vaccines as a/the cause of autism.

    [2] The statement that the doctor will almost certainly prescribe methyl-B12 injections and the admonition to read his “article” on methyl-B12 prior to the visit. Whatever happened to treating the patient? Is this “holistic medicine” - everybody gets the same treatment regardless of their problem?

    [3] The statement that the doctor would be examining the child for only 10 - 15 minutes of a one-hour examination and that the parents should bring a sitter to watch the child for the remainder of the hour. What about having the “doctor” watch the child’s behavior while he tries to sell his line of BS to the parents? Wouldn’t that be useful?

    Amazing!

    With your permission, I’ll be including this in Part 4, Therapeutic Myths and Misadventures.

    Prometheus

  12. Jon Says:

    Interesting post, thanks.

    BMDs also often seem to have an incredibly impressive range of (claimed) expertise, e.g. Michael Ash apparently believes that he has considerable expertise in everything from neurology to GI problems to nutrition…or see also the scope of Wakefield’s work.

    Whereas a ‘conventional’ medical expert will often have a relatively narrow area of expertise (e.g. a neurologist might refer patients to another dr to assess GI problems), BMDs often claim to be experts in almost everything…

  13. A Suggestion for Dr. Wakefield Says:

    [...] messages that are clearly grateful to and in support of Dr. Wakefield as a sort of “brave maverick doctor” and to decry “scapegoating” of him. Kevin and Orac ask how the doctor can [...]

  14. Respectful Insolence Says:

    A photon has moved…

    Way back when I first started my blog, one of my favorite blogs was A Photon in the Darkness, in which Prometheus regularly demolished quackery, particularly autism-related quackery. Sadly, Prometheus’ blogging has become more and more sporadic over t…

  15. drmaier Says:

    You’re crackin’ me up here, man.

    Verrrry creative.

  16. Who needs facts? These vaccine conspiracy pieces write themselves… « Dr Aust’s Spleen Says:

    [...] Blairs’ refusal to reveal what jabs they had given baby Leo - and on the narrative device of the ”Brave Maverick Doctor” (Andrew [...]

  17. blog-thing : The differing worlds of autism and Alzheimer’s Says:

    [...] those “Brave Maverick Doctors.” Professor Wischik is something of a brave maverick doctor, himself. Again, from The [...]

  18. blog-thing : Ben Goldacre versus Matthias Rath - Victory! Says:

    [...] brave maverick doctor with a quack cure for everything heads for Africa. I wonder if Ben Goldacre wants to write another [...]

  19. Science-Based Medicine » Dr. Jay Gordon and me: Random encounters with an apologist for the antivaccine movement Says:

    [...] any indication, one could expect that this foreword would be replete with pseudoscience and “brave maverick doctor” posturing. Readers are not likely to be disappointed in this regard. In fact, Dr. Gordon has [...]

  20. Science-Based Medicine » The (Not-So-)Beautiful (Un)Truth about the Gerson therapy and cancer quackery Says:

    [...] a lot like the Brave Maverick Doctors who champion unscientific medicine. After all, Kevin Trudeau has made a cottage industry and sold [...]

  21. Science-Based Medicine » Since when did an apologist for the antivaccination movement, Dr. Jay Gordon, become an “expert” in vaccine law? Says:

    [...] they cause autism. He long ago abandoned the conventional vaccination schedule and now is a “brave maverick doctor” who goes his own way. No meekly following along with the herd of pediatricians in thrall to [...]

  22. Some Rebuttals to Jeni Barnett’s Canards in Her LBC Radio MMR Segment « Holford Watch: Patrick Holford, nutritionism and bad science Says:

    [...] Myth of Brave Maverick Doctors Being Stifled and Suppressed [...]

  23. Science-Based Medicine » How do scientists become cranks and doctors quacks? Says:

    [...] The second thing that needs to be considered is that there is a component of being a physician that doesn’t exist for basic scientists that provides added impetus to the transition from scientist/physician to kook, and that component is direct interactions with patients. This component is a powerful contributor to physicians becoming what Prometheus likes to call them, “brave maverick doctors.” [...]

  24. Science-Based Medicine » The General Medical Council to Andrew Wakefield: “The panel is satisfied that your conduct was irresponsible and dishonest” Says:

    [...] dedicated to the discredited idea that vaccines cause autism. He is the prototypical “brave maverick doctor” and don’t need no steeenkin’ science to know that he’s [...]

  25. Science-Based Medicine » Dr. Oz on alternative medicine: Bread and circuses Says:

    [...] the “brave maverick doctor” pose. I have no idea if Dr. Oz is aware of this or not, but this is the same pose that [...]

  26. Science-Based Medicine » Chemical castration of autistic children leads to the downfall of Dr. Mark Geier Says:

    [...] will see the loss of Mark Geier’s medical license as evidence of his cred as a “brave maverick doctor,” much as Wakefield’s cred remains high in the anti-vaccine movement. Even so, in the [...]

  27. DAM! Says:

    Defeat Autism Muppetry!

    Will we be adding Dr Bob to the hall of shame?

  28. Prometheus Says:

    I believe that “Dr. Bob” Sears added himself to the “Hall of Shame”. His books and statements make it abundantly clear that he is more interested in fame than he is in providing good medical advice.

    Prometheus

  29. Catherina Says:

    Bob is just not very bright and not very well read, the rest he is making up. The stuff he *admits* not knowing and then gives advice based on that lack of knowledge is embarrassing. He has withdrawn to the safety of sMothering (where facts are censored). Probably a good choice…

  30. Prometheus Says:

    Catherina,

    “Dr. Bob” Sears strikes me as an average (or slightly below) paediatrician who saw “alternative” medicine as way to get some fame and a little fortune.

    Like many (most?) physicians, “Dr. Bob” didn’t get a good grounding in how science works and how to use science to keep from fooling yourself (or letting others fool you). This is not surprising, since medical school is a four-year high-speed information overload with little time available to explain how to distinguish between solid scientific information and anecdote.

    For that matter, much of medical practise information is presented to medical students, residents and even board-certified practising physicians as pre-digested “factoids”, with little indication of its basis (or lack thereof) in scientific data. Only very recently has there been any attempt to show what type and quality of data supports various practise recommendations.

    As a result, “Dr. Bob” and others see little difference between practise recommendations supported by multiple controlled trials and those based solely on the “clinical experience” of other physicians (see: “Dr. Jay” Gordon). This leads them to believe that the “narratives” of parents (e.g. vaccines cause autism) are as valid as scientific studies. Paradoxically, “Dr. Bob” (and others of his ilk) may see “narratives” and “testimonials” as more valid than scientific studies, because the scientific studies are “tainted” with “conflict of interest”, while the narratives and testimonials are “pure” and “heartfelt”.

    In short, “Dr. Bob” Sears is probably of above average intelligence but of (at best) only average ability to distinguish fact from fancy. Having cast his lot with the anti-scientific movement, I expect that he will become progressively more “alternative” in his statements, much as happened with Dr. Mehmet Oz and Dr. Michael Roizen. In fact, we have seen just such a trend in his statements and writings over the past few years.

    Prometheus

  31. Catherina Says:

    You are very indulgent, Prometheus! It is too bad that Bob’s board just went up in smoke, since he had already become increasingly “alternative”, suggesting almost every time he posted that a mother not vaccinate (for various hand-waving reasons). To watch his ignorant and dangerous statements on sMothering and FB is gut wrenching. Luckily his censorship keeps me from wasting too much time there.

  32. Prometheus Says:

    Catherina,

    Yes, I’ve been told that I harbour a curious mix of cynicism and optimism. I generally expect people to act according to what they perceive is their own best interest but I don’t assume that they will violate ethical, moral or legal codes to do so.

    However, on numerous occasions, I have been wrong about the last part. Some people aren’t constrained by behavioral norms and expectations and will do “whatever it takes” to accomplish their goals. I actually feel pity for those people.

    As for “Dr. Bob” Sears - he has burned his bridges and can never return to “regular” (i.e. real) paediatric practise. He will forever be relegated to the fringes of medicine.

    Since “fringe” practises like those advocated by “Dr. Bob” are supported only by their popularity, his fame and fortune live and die by the often fickle mood of the crowd. Once his practises are exposed as worthless or even dangerous, his fame and fortune will disappear.

    Prometheus

  33. Science-Based Medicine » test Says:

    [...] are of the type that portrays doctors as sending a patient home to die; that is, until the “brave maverick doctor,” (Stanislaw R. Burzynski, MD, PhD, of course) comes to the rescue with his unconventional [...]

  34. Science-Based Medicine » Stanislaw Burzynski: Bad medicine, a bad movie, and bad P.R. Says:

    [...] are of the type that portrays doctors as sending a patient home to die; that is, until a “brave maverick doctor,” one Stanislaw R. Burzynski, MD, PhD, comes to the rescue with his unconventional and [...]