Myths and Legends of Autism: Part 4
September 24th, 2007
Therapeutic Myths and Misadventures
Note: This ‘blog entry may contain metaphor, simile, analogy and comparison. These literary devices are not intended to imply, suggest, or assert anything about autism or people who identify themselves (or are identified by others) as autistic.
Just as Shakespeare did not mean that Juliet was a type G2 star when he penned the words, “But soft! What light through yonder window breaks? It is the east and Juliet is the sun.” [Romeo and Juliet, Act 2, Scene 2], comparisons between autism and other unrelated conditions should not always be taken literally. For those people who insist on finding meanings not intended by the author, I refer you to Post-Modern Literature Criticism sites.
This has been the hardest part of this series to write – but not because of a lack of material. On the contrary, the struggle has been to decide which therapeutic myths and misadventures to write about. I’m in a target-rich environment and I’ve really had to discipline myself to keep this entry from running to War and Peace size.
The purpose of today’s entry is to show some of the thinking errors that lead people – both practitioners and parents – to subject autistic children to “therapies” that are – at best – unproven and may even be dangerous.
I do not intend for this to be an exhaustive discussion – or even list – of unsupported autism therapies. That would be beyond the scope of a ‘blog – perhaps beyond the scope of any single person. Therapeutic myths in autism are multiplying faster than rabbits and nobody – not even the most well-informed DAN! practitioner – can hope to know of them all.
The first myth that I will address today is – technically speaking – not a therapeutic myth at all. It is a myth about the diagnosis of autism. But this particular myth is so intertwined with the “alternative” therapies of autism that it is best discussed with them.
The Myth of Developmental Stasis:
This myth, unlike most pertaining to autism, is not loudly trumpeted by most of those who promote “alternative” autism therapies. It is generally an implied myth. It is whispered, if it is mentioned at all, except by a few who fail to fully understand its implications.
Autism is typically described as a condition of developmental delay. Among the medical specialists who diagnose and treat autism, this is not a disputed issue. Children whose development remains static (i.e. do not progress, even slowly) are not considered to be on the “autistic spectrum”.
However, as “alternative” therapies for autism have failed to bear fruit, one popular tactic has been to stall for time. And this stalling requires the Myth of Developmental Stasis.
For example, when chelation therapy was first suggested as a treatment for autism, it was asserted that it would work (was working!) in a matter of months. When this didn’t happen for the majority of autistic children, the time window was extended – gradually – until it is now two to three years.
Even though there is no plausible biological reason that chelation for mercury (or lead or…) would take so long to be effective (given that much higher body burdens are cleared in a much, much shorter time), the proponents of this therapy argue that they are seeing improvement in their children’s condition in that time.
Of course, the children are also growing older. A child who began chelation therapy at age three would be five or six at the end of the putative “effective treatment duration”. It would normally be considered pointless or even silly to compare the behavior and developmental stage of a six-year-old to their behavior and development at three, even if that child had a developmental delay.
Unless, of course, you argue that they wouldn’t have progressed at all without the therapy. Which would indicate that they had something other than autism – since autism is a condition of developmental delay, not developmental arrest.
Strange as it may seem, this is precisely the argument that is made – or, more often, implied – when “alternative” autism therapies are discussed; that the autistic children could not have pregressed without the “intervention”.
Despite mountains of data going back several decades that shows autistic children do develop without any “biomedical” or other therapies, the “alternative” autism therapy supporters insist (usually implicitly) that the children receiving these treatments would otherwise not have progressed at all.
If that were true – which it is not – then “untreated” autistic children would remain at the same developmental stage they were when they were diagnosed – which is obviously not the case. Autistic children – even the most severely affected – progress, develop and mature. Even without “biomedical intervention”.
You can see now why this myth is generally kept under wraps; because it wouldn’t survive the light of day! There are those few who argue that autistic children – or, at least, their autistic child – won’t develop at all without whatever “intervention” they are touting, but they are apparently unaware of the obvious implications of what they are saying.
While I can’t say for certain that it might not be true for their child, or even a small number of children, I can be certain when I say that any child who is suffering from a developmental arrest lasting more than a year does not have autism.
The Legend of Secretin
“Aw man! Not secretin again!”, I hear you groan. I’m sorry, but secretin holds a special place in the pantheon of “alternative” or “biomedical” treatments for autism. It is – as far as I know – the only “alternative” autism therapy that has been tested in the rigorous fashion that the drugs used in “mainstream” (evidence-based) medicine are routinely subjected.
And, I might add, it came up short.
Despite that, secretin remains a useful example of what might happen if more of these “therapies” were tested.
The Legend of Secretin started in 1998, when Victoria Beck’s son received secretin as a routine part of an upper endoscopy. Secretin stimulates secretion of pancreatic enzymes and is used to demonstrate that the pancreatic duct and common duct are unobstructed without the risk of putting a catheter or endoscope into those ducts.
After the endoscopy, Ms. Beck’s son experienced a rapid burst of development, the extent of which is described in Ms. Beck’s book, Confronting Autism, which, regrettably, is out of print at the moment. Before long (October 1998), she was a national television celebrity and the entire “autism community” was aflame with a desire to inject their children with secretin.
I have to emphasize that I am in sympathy with the parents who rushed into this “cure”. It was advertised as nothing less than a miracle, although I remain curious about Ms. Beck’s son’s present level of development and even the degree of improvement he experienced after his endoscopy.
At the same time, there were a number of “leading lights” in the “biomedical” movement who were warning that the “window” to treat autism was narrow and that treatment had to begin very young in order to “cure” the child. Also contributing to the sense of panic was the fact that the only company producing secretin (Ferring) had stopped making it.
Almost immediately, a number of small pilot studies were begun at various universities. The early results were not as encouraging as Ms. Beck’s results, but that did little to dampen the enthusiasm for secretin.
Interestingly, at the same time, two patent applications were made. The first, filed on May 19th, 1998 by Victoria Beck, Dr. Karoly Horvath and the Repligen Corporation, was for using secretin in the diagnosis and treatment of autism.
On January 13, 1999, as second patent application was filed by Victoria Beck, Dr. Bernie Rimland and the Repligen Corporation for using secretin – administered by any conceivable route – for the treatment of autism.
So, here we have some of the biggest advocates of secretin for the treatment of autism represented in applications to patent the use of secretin in the treatment of autism.
Interesting.
Well, the story continues. More research and better research was conducted. Repligen, the company that now owned the patents (having paid handsomely for them), was gearing up to make recombinant secretin and stood to profit handsomely if secretin was an effective treatment for autism. They chose to pursue FDA approval for secretin as a treatment for autism rather than simply allowing practitioners to use it “off label”. It was a costly choice, in more ways than one.
As the months turned into years, the bigger and better secretin studies were failing to show any benefit. However, at a DAN! conference in October of 2001, Walter Herlihy, PhD, CEO of Repligen, reported that the results of the Phase II study, while not showing statistically significant results, were very promising.
The bad news kept coming in, but the Repligen Corporation persevered with Phase III of their FDA approval process. Finally, on January 5, 2004, even Repligen had to admit that secretin was no better than placebo, even on a highly selected group of children that their Phase II study indicated would have the best response.
The fact that the company that stood to gain the most if secretin were an effective treatment for autism had finally admitted that it was no better than placebo was completely ignored by many. The best example is a letter from Bernie Rimland.
Over three years later, secretin is still used by a number of “alternative” practitioners in the treatment of autism. But then, so is homeopathy, another placebo.
What are the lessons to be learned from The Legend of Secretin?
[1] People can fool themselves – a large number of doctors and parents truly believed that secretin had produced significant improvement in autistic children. When the evaluators (doctors, therapists and parents) didn’t know who had gotten the drug and who had gotten placebo, they couldn’t tell the difference between the two groups.
[2] Smoke does not always equal fire – despite all the hype, secretin ended up being worthless as a treatment for autism. Hundreds of people claimed that it “worked” – it didn’t. Some still claim that it “works”.
The Myth of Medical Transubstantiation:
Several of the proponents of “alternative” autism therapy like to rant about the “evils” of pharmacotherapy. Dr. Bernie Rimland (of blessed memory) used to go on about the use of Ritalin and other “drugs” on autistic children. It seems that they see anything tainted with the breath of “Big Pharma” to be unacceptable for human use.
Unless, of course, it is prescribed and/or administered by one of their pet physicians.
Lupron, Actos (note “black box” warning), intravenous immunoglobulin (”black box” warning), Succimer, Endrate (”black box” warning)/Versenate (”black box” warning), and even Lamictal [for autism, not seizures](”black box” warning) and Depakote (”black box” warning) are all acceptable therapies if they are administered by one of the annointed.
In other words, a “drug” isn’t a “drug” if it’s used for something that it hasn’t been approved or studied for. And if it’s given by a “Brave Maverick Doctor”.
This seems a bit…well, hypocritical.
After all the time spent beating up on doctors who prescribe (and parents who administer) Ritalin and Risperdal to autistic children, shouldn’t they at least be a little embarassed about prescibing Lamictal (which has been shown to be no better than placebo - except in its ability to cause side-effects)?
Well, that’s all for now. I’m going to be taking a slightly different tack for the next several posts as I gear up to teach a new course in Evolution. I think that it’s time for some basic lessons in critical thinking and “how science works”.
Prometheus
Filed under: Autism Science, Autism Treatments, Critical Thinking | 23 Comments »
Myths and Legends of Autism: Part 3
September 7th, 2007
Diagnostic Myths
There are almost as many myths about the diagnosis of autism as there are people with that diagnosis. But, I suppose that the first myth we need to address is the myth that a diagnosis of autism actually means anything.
The Myth of the Meaningful Diagnosis:
In medicine, a diagnosis is supposed to provide – in an ideal world – three things:
[1] Prognosis: a meaningful diagnosis will allow the practitioner and patient to anticipate what will happen in the future – how long the disease will persist, whether it will get worse, and the likelihood of recovery.
[2] Treatment: a meaningful diagnosis will indicate treatments that are helpful to cure or moderate the disease. If there are no known treatments, a valid diagnosis will indicate this, as well.
[3] Pathogenesis: a meaningful diagnosis will indicate the physiological abnormalities that cause the disease to occur (e.g. bacterial infection, enzyme dysfunction, toxicity, etc.).
Now, there are lots of meaningful diagnoses that do not meet all threee of these criteria. We don’t know, for example, what causes pancreatic cancer, but we do know what the prognosis (grim) and the treatments (few and not very effective) are.
But what about autism?
Prognosis: A diagnosis of autism in early childhood gives no indication of what the child’s eventual functional abilities will be. Even the severity at diagnosis is no predictor. This has become even more of a problem as the diagnosis of autism has become more “inclusive”. If you extend the category of “autism” to include all those diagnosed by educational or social service agencies, the diagnosis loses all prognostic ability.
Treatment: The most scientific answer to the question of treatment is that none of the currently touted treatments for autism has been shown to be consistently effective.
None.
Even the most rabid of “biomedical” apologists will have to admit (although never in public) that no one treatment or group of treatments has been shown to work for even half of the autistic children treated. And this problem is not just limited to “alternative” treatments – none of the treatments recommended for autism have been shown to work for over half of the children treated.
Even cancer treatments have a better record, if you remember that, in many cases, their expected effect is to slow the growth of the tumor rather than to affect a “cure”.
Cause: Despite years of research, there is no consensus about the location of the pathology in autism (other than to say that autism affects the brain). Mirror neurons, microcolumns, corpus callosum, amygdala, etc. have all been proposed, but have not been consistently found to be the site of the dysfunction. Even the “fringe element” in autism pseudoscience is not consistent – except in a superficial way – about the “site of the lesion” in autism.
The non-scientific element in autism “research” has proposed a number of causes, ranging from vaccines to metals, all without adequately explaining how these could explain the wide range of autistic phenotypes or how it is that most children exposed to the same substances do not develop autism. Their usual rejoinder is to blame the variation on “genetic differences”, without bothering to explain what those might be.
Having been backed into a corner by the very research they claimed to desire, many of the so-called autism advocacy groups have resorted to extreme vagueness, blaming “environmental factors” or “vaccine components”. The bottom line is that there is no consensus – not even a general agreement – as to the cause of autism or even the area of the brain that is affected.
Thus, it appears that a diagnosis of “autism” provides no medically meaningful information.
The Legend of the Autism Epidemic:
The Autism Epidemic, so the legend goes, started in the mid-1980’s and has continued, unabated, to the present day. There are many variations on the legend, mostly revolving around specific causes. Vaccines, mercury, cell phones, television, Sesame Street and Britney Spears have all been named as the cause of the “epidemic” in one or more versions of the legend.
Like many modern legends, the purpose of the Legend of the Autism Epidemic is to make a complex situation simpler and more easily understood. Unfortunately, in the real world (and especially in medicine and biology), “simpler” is often just a euphemism for wrong.
When so-called autism advocacy groups developed their “autism epidemic” legends, they looked at autism numbers from – initially – the California Department of Developmental Services (CA-DDS), which showed a rise in autism intake numbers starting somewhere around 1985 (depending on how you interpret the curve). They then came up with a variety of things that had changed at about the same time, coming up with – strangely enough – thimerosal (thiomersal), a mercury-containing preservative present in some vaccines since the 1930’s, and the measles-mumps-rubella (MMR) vaccine, which had been introduced in the US in the 1970’s and in the UK in the late 1980’s.
The thimerosal “connection” has failed to keep up with recent developments, with the number of CA-DDS clients with a diagnosis of “autism” continuing to rise despite thimerosal being eliminated (if you believe “the government”) or greatly reduced (if you believe the conspiracy theorists) in childhood vaccines.
The MMR “connection” was always a bit “iffy” in the US, since MMR uptake was around 95% in the mid-1980’s and continued at that level (or lower) to the present date. At any rate, it lacks any supporting data now that the small bit of data that did seem to support it has been shown to be spurious.
Regardless of the “cause” attributed to the “epidemic”, the legend remains. Doubtless, there will be other putative causes assigned later. But what about the reality of the epidemic?
One of the changes that occurred at about the same time as the start of the “epidemic” were changes in the diagnosis of autism. The Diagnostic and Statistical Manual of Mental Disorders, 3rd Edition (DSM-III) was published in 1980. This was a revolutionary change in the DSM (which was first published in 1952) and included – for the first time - autism. Strangely enough, this change is rarely mentioned when the “autism epidemic” is discussed.
In 1992, the Individuals with Disabilities Education Act (IDEA) was changed to include autism as an eligibility category. Prior to this, it must be assumed that children with autism either did not exist or were listed under a different eligibility category. It is interesting to note that the number of children with an IDEA eligibility of “mental retardation” has declined in lockstep with the increase in children who have the “autism” eligibility. Strangely enough, this fact is rarely (or never) mentioned in the context of the “autism epidemic”.
It would also seem that, while the IDEA and CA-DDS numbers support an increase in autism over the past 15 years (past 20+ for the CA-DDS), there have been significant changes in the diagnosis of autism in that time.
In 1987, the DSM-IIIR (revised) was published, with changes in the criteria for autism diagnosis. In 1994, the DMS-IV (4th Edition) was published, with even more changes. The DSM-IVTR (text revision) was published in 2000, with extra information on the various diagnoses.
The awareness of autism among doctors, educators and parents has skyrocketed from 1985 to today. As has happened with ADD/ADHD, the diagnosis is often made in error, by people who are not qualified to do so (even if the are legally allowed to do so) and who do not use the consensus medical criteria (more on that later).
Also occurring in the same time, the California state legislature – and state legislatures from Alabama to Wyoming – were passing laws, codes and rules pertaining to the evaluation of autism in school-age (and pre-school) children. These “educational” diagnoses of autism have potentially ballooned the number of children carrying the “label” (but not the diagnosis) of “autism”.
And all of this was happening during the “autism epidemic”.
So, what does all of this mean to the Legend of the Autism Epidemic?
[1] Children diagnosed with autism (medical diagnosis – not “educational” diagnosis) in 1985 cannot be compared with children diagnosed with autism in 2007. The criteria – even for medical practitioners - have changed dramatically. A study from the MIND Institute (Byrd, 2000) showed the dramatic differences between people with autism born in the years 1983-1985 and those born in the years 1993-1995.
[2] Education and social services criteria for “autism” are even looser than the medical criteria, and have changed more over the years. Since almost all of the “epidemic” data comes from either education (usually IDEA reports) or social service (usually CA-DDS) sources, it is clear that no meaningful comparison can be made, a point that the CA-DDS itself makes.
[3] Increasing awareness has led to a number of practitioners – some of whom have little or no experience or training in the recognition of autism – to “diagnose” autism in children who do not meet the criteria. This is compounded by the number of children who have received “educational” diagnoses of autism, often using criteria that are appallingly broad and vague.
The Myth of Autism as a Single Disorder:
Almost anyone who has spent a few hours with a group of children carrying the “autism” label will note the wide range of abilities and disabilities among them. Added to that simple observation is the fact that a child diagnosed with “autism” can have any of a number of associated conditions (e.g. GI disturbance, coordination difficulty, sensory sensitivities, etc.) or none at all. Further, a child diagnosed with “autism” may eventually become an independent adult, may need to be admitted to an institution or any outcome between the two.
This has led some of the more astute scientists and clinicians to suggest that “autism” is not a single disorder.
When viewed in that light, many of the puzzles of autism begin to make sense. If autism is a symptom (more properly, it would be a sign) that there has been a disturbance in a neural pathway (or a set of neural pathways), then you would expect the following:
[1] Any disorder that disrupts the neural pathway(s) could result in the sign known as autism. Thus, autism could have a number of different and even disparate causes (much as the sign fever does).
[2] The disorder that disrupts the neural pathway(s) and causes autism could disrupt other physiological functions, causing other signs and symptoms – much as fever can be accompanied by a rash, nausea, coughing, or any combination (or none) of the three.
[3] Each separate disorder will have its own prognosis, cause and treatments. Thus, giving a person with disorder A the treatment for disorder B will generally be ineffective. This has the effect of masking treatments that are truly effective for one of the disorders causing autism in the following way:
If disorder A causes 10% of the autism in a particular population and treatment X gives detectable improvement in 80% of patients with disorder A, treating 100 people with X gives the following results:
People with A: 10
People with A who improve: 8
People with disorders other than A (and who presumably don’t improve): 90
Overall number who improve: 8
Apparent effectiveness: 8%
So, even a treatment that is 80% effective (probably an unrealistically high rate for autism) would appear no better than placebo if it is effective in only 10% of people with autism.
[4] For genetic disorders causing autism, each will have its own specific location on the genome. This is exactly what multiple studies of familial autism have found and is also borne out by the more recent genetic studies looking at copy number variations in autism.
It would seem, then, that viewing autism as a symptom or sign is a better “fit” with the data than any of the current “single cause” hypotheses.
Next: Part 4 - Therapeutic Myths and Misadverntures
Prometheus
Filed under: Autism Science, Autism Treatments, Critical Thinking | 49 Comments »
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 | 24 Comments »