I’ve been blogging for over a decade now, a fact that I find really hard to believe looking back on it right now. I’ve told the story before, but it’s worth briefly recounting again because doing so will explain why the story I’m about to discuss caught my attention. My “gateway drug,” if you will, into skepticism was discovering Holocaust denial in the late 1990s on Usenet, a vast and sprawling conglomeration of thousands of discussion forums that began to fade away at the turn of the century with the rise of web-based forums and Google providing an interface to it to make it Google Groups. The forum where I first discovered Holocaust denial and learned to combat it, alt.revisionism, still exists, but long ago degenerated into a cesspool of racism, spam, and trolling. A couple of years later, around 2000 or so, I discovered quackery and the antivaccine movement, thanks to a Usenet newsgroup known as misc.health.alternative, which is where I honed my early skills applying science to medical claims. It’s also where I first encountered Peter Moran, a regular commenter here who greatly inspired me back then with his full-throated criticism of cancer quackery and his website that taught me reasons why cancer quackery could appear to work even when it did nothing to impact the progression of the cancer.
In December 2004, intrigued by all the news stories about blogging and having discovered a number of good blogs, I decided on one dark, gray Saturday afternoon to dip my toe in the blogosphere. On the spur of the moment I created the first iteration of of this very blog on—what else?—Blogger. Much to my own amazement, over the course of a year I got my little hobby noticed, to the point where I was invited to join a this blog collective, which, even more amazingly, is still here nine years later.
During my early days, though, there was one person who also inspired me, helping me to learn about the pseudoscience that undergirds the antivaccine movement and, in particular, the quackery making up what is known these days as the “autism biomed” movement. His name is James Laidler, and he was one of the ones who introduced me to this topic which I’ve written about many times both at my not-so-super-secret other blog and, of course, right here. In doing so, over the years I’ve catalogued why “autism biomed” seems compelling to many parents with children with autism, how antivaccine groups use fake “medical conferences” to sell autism biomed by giving a patina of medical respectability to rank quackery like bleach enemas, and providing a place where those selling unscientific treatments can find willing customers and where disreputable discredited “scientists” like Andrew Wakefield and Mark Geier can find adoring fans who believe their quackery.
I bring this up because last week WIRED published an excellent article about Jim Laidler, “An Alternative-Medicine Believer’s Journey Back to Science.” Appropriately enough, it’s by Alan Levinovitz, an assistant professor of religion at James Madison University. I say “appropriately enough” because, as has been noted here on a number of occasions, there are many religion-like aspects to alternative medicine in general but to the autism biomed movement in particular. Indeed, the two are often tied together, with the motivation for some alt-med being explicitly religious and belief in alt-med sharing some major characteristics with religion, particularly belief in miracles against evidence, charismatic leaders (like Andrew Wakefield) who can do no wrong, and mutually-supportive communities of believers who reinforce each others’ beliefs and ward off skepticism. Add to that the magical thinking, and it’s not for nothing that I’ve referred to the central dogma of alternative medicine as being that wishing makes it so. Indeed, it’s for good reason that I frequently point out that most “energy medicine” (particularly reiki) is basically faith healing that substitutes Eastern mysticism for Judeo-Christian religious beliefs.
In Levinovitz’s profile of Jim Laidler, we see a lot of this, and I learned some details that I didn’t know about Laidler before. Levinovitz also grasps the religion-like nature of alt-med by starting the article bluntly saying:
Jim and Louise Laidler lost their faith on a trip to Disneyland in 2002, while having breakfast in Goofy’s Kitchen.
Jim Laidler and his wife Louise are both doctors, and two of their sons, Ben and David, were diagnosed with autism. In the late 1990s until what happened in 2002, the Laidlers were very much true believers in autism biomed. I knew this back in the day, because I had read Jim Laidler’s writing extensively before; indeed, it was his recounting of his experiences treating his sons with autism biomed quackery that helped me to understand how confirmation bias, regression to the mean, placebo effects, and observer effects could lead parents to believe that pseudoscientific treatments were working to “recover” their children from autism when they were doing nothing to impact the course of the condition. He was the first one to teach me that, contrary to the myth that leads parents to attribute any improvement in autistic children to whatever quackery du jour they are using, autism spectrum disorders are conditions that result in neurodevelopmental delay, not neurodevelopmental stasis. In fact, autistic children can and do recover to the point where they “lose the ASD diagnosis” in anywhere from 3% to 25% of cases. (Yes, the literature is a variable on this point.)
So, there they were, the Laidlers, treating Ben and David with a wide variety of quackery to “recover” them from autism, as recounted by Levinovitz:
For several years, on the advice of doctors and parents, the Laidlers treated their children with a wide range of alternative medicine techniques designed to stem or even reverse autistic symptoms. They gave their boys regular supplements of vitamin B12, magnesium, and dimethylglycine. They kept David’s diet free of gluten and casein, heeding the advice of experts who warned that even the smallest bit of gluten would cause severe regression. They administered intravenous infusions of secretin, said to have astonishing therapeutic effects for a high percentage of autistic children.
Using substances known as chelating agents, the Laidlers also worked to rid Ben and David of heavy metals thought to be accumulated through vaccines and environmental pollutants. With a PhD in biology as well as his MD, Jim Laidler had become an expert on chelation, speaking nationally and internationally about it at conferences dedicated to autism and alternative approaches.
I’ve discussed such treatments many times before here at SBM, particularly chelation therapy, which has no basis in science for treating autism and whose rationale is predicated on the belief that the mercury in the thimerosal preservative that used to be used in many childhood vaccines causes autism. It’s a dangerous treatment that has caused at least one death. Autism biomed in general can be viewed as uncontrolled and unethical experimentation on a vulnerable population, autistic children. It’s definitely worth pointing out that, with an MD and a PhD—just as I have!—Laidler had the intellectual and scientific background to recognize that what he was doing was without a basis in science and medicine. Yet he didn’t, at least not for several years. Indeed, he helped promote chelation therapy and “spread the good news,” so to speak. How did this come about?
The journey to belief
In Levinovitz’s account, the Laidlers’ journey began after their eldest son, Ben, was born. He didn’t hit his milestones on time, such as rolling over, crawling, and walking. By the time he was three and a half years old, his speech consisted largely of echoing, and the Laidlers could no longer attribute his developmental delays to being at the low end of the bell-shaped curve for normal variation in development. In fact, by this time, Laidler was beginning to suspect, based on Ben’s lack of eye contact and other behaviors, what was probably going on, recounting it thusly, “I knew what this looked like. But I didn’t want to bring it up, not even to Louise. You get superstitious, like if you say something it’ll come true.”
Their son David was born three years after Ben, and initially he hit all his developmental milestones early. The family moved to Portland, and the Laidlers discovered what then made up the autism biomed movement on the Internet, mainly online forums where parents traded success stories. Remember, this was 1997, long before the many, many antivaccine, pro-autism biomed websites that exist now, such as Age of Autism, The Thinking Moms’ Revolution, and the like. Andrew Wakefield’s infamous and now retracted Lancet case series wouldn’t arrive until next year, and the full fear mongering over mercury in vaccines was still a few years away. For example, Robert F. Kennedy, Jr. didn’t publish “Deadly Immunity” until 2005. Jenny McCarthy’s antivaccine activism wouldn’t begin until a decade later. To bring it back around to how I started this post, there was Usenet, and there were private discussion forums, and that was about it. And, yes, I do recall reading Laidler’s description of how those forums were used mainly for parents to share “success stories” that, when he later looked at them critically, were not. No quackery was too outrageous, and all had validity.
Unfortunately, after hitting his milestones early for a while, David regressed. It was not long after that before he was diagnosed with autism as well. It was at this point, not surprisingly and in a very human reaction, the Laidlers fell into a depression.
Then another parent told Louise about Defeat Autism Now! She decided to attend.
The conference was a festival of alternative medicine, a campground of tents and booths and speakers offering attendees everything from cutting-edge supplements to dolphin therapy. Everyone—parents and presenters alike—swore by their preferred treatment, and countless stories circulated about severely autistic children who instantly turned around on the right protocol.
Louise returned filled with new hopes. At first, Jim was skeptical—”I hadn’t been there. I hadn’t felt the excitement”—but soon, he was hopeful too. They decided to put David and Ben on more supplements. They tried secretin infusions. They attended another DAN! conference. They came to believe in many other alternative therapies.
DAN!, as you might recall, consisted of a large number of practitioners offering all manner of quackery under the rubric of “autism biomed.” These doctors were listed on the registry of the antivaccine autism biomed group known as the “Autism Research Institute” an organization founded by Dr. Bernard Rimland in 1967. DAN! physicians generally became DAN! physicians by undergoing training through the ARI, which held yearly DAN! conferences to discuss the latest autism biomed quackery. Interestingly enough, in either an apparent attempt to become more “legitimate” or in response to lawsuits against DAN! doctors, ARI stopped maintaining its DAN! registry at the end of 2011. Back in the late 1990s through much of the first decade of the 21st century, though, if you wanted to find an autism biomed doc, the DAN! list was the first place to go. Unfortunately, many parents, like the Laidlers, did just that.
The Laidlers, however, eventually realized their mistake. Many parents, such as those who populate the antivaccine crank blog Age of Autism as bloggers or the inappropriately named “Thinking Moms” of The Thinking Moms’ Revolution never do. So what “converted” the Laidlers back to science? To understand this, we have to go back to what happened in Goofy’s Kitchen thirteen years ago.
Goofy’s Kitchen
The deconversion
So what, exactly, happened in Goofy’s Kitchen at Disneyland? It’s something that to most people would seem relatively minor but to the Laidlers immediately took on outsized significance. However, it’s also a good example of how a believer’s mind needs to be “primed” before an incident like this can tip him or her back towards skepticism. Before this event, Jim Laidler had started to doubt the whole DAN! subculture and what it was preaching. Levinovitz recounts how Laidler had begun to cringe when he heard of other parents mortgaging their homes to pay for expensive unproven autism biomed treatments and how “alarms went off” when parents and doctors would advocate dangerous protocols, such as extreme forms of chelation. So he spoke out against the more dangerous and extreme treatments being promoted and offered by DAN! doctors. That’s when he started to learn that skepticism is not appreciated in movements like DAN! Indeed, a prominent conference organizer took him to task for such criticisms, warning him “never to criticize anyone’s approach, no matter how crazy or dangerous it seemed.” We see a less extreme form of this same attitude in the seemingly more “reasonable” world of “complementary and alternative medicine” (CAM) or “integrative medicine,” where, seemingly, every hypothesis and treatment is potentially valid, even homeopathy, and CAM advocates are loathe ever to dismiss any treatment, even when it’s magical faith healing like reiki or sympathetic magic like homeopathy. More on that later.
First, let’s see what happened at Goofy’s Kitchen:
It was in the grip of these doubts when, inside Goofy’s Kitchen, Jim and Louise returned to their table from the buffet and noticed 6-year-old David hadn’t come with them. They saw him standing at the buffet, devouring a waffle. The Laidlers feared the worst. “We’d been told that the slightest smidgen of gluten would crash him,” Jim says. “It was absolutely devastating to watch.” But by the end of the vacation, they realized David was fine. Nothing happened.
When they returned home, the Laidlers took David off his restrictive diet, and he continued to improve—rapidly. Louise stopped Ben’s supplement regimen—without telling Jim—and Ben’s behavior remained the same. Then, after months of soul-searching, Jim Laider took to the internet to announce his “de-conversion” from alternative medicine—a kind of penance, but also a warning to others. “I had this guilt to expunge,” Jim says. “I helped to promote this nonsense, and I didn’t want other people to fall for it like I did.”
Jim Laidler had become an alt-med apostate. As anyone who’s studied religion knows, in general believers detest apostates far more than unbelievers. After all, unbelievers might still be made into believers and might just be ignorant of the belief system of the religion. Apostates, on the other hand, were once believers who were fully invested in belief but then actively decided to reject the religion. In this, he is like Britt Hermes, who was a naturopath but abandoned the faith after recognizing the pseudoscience at its heart, or Sam Homola, a chiropractor who rejected chiropractic’s more outlandish claims for the same reasons, or Paul Ingraham, a former registered massage therapist who couldn’t bear the pseudoscience anymore. After he announced his deconversion, Laidler suffered the usual fate of the apostate, shunning and attacks:
When Jim Laidler became an alt-medicine apostate, proponents of the treatments he criticized went on the attack. He received death threats from parents. It’s an intellectually and emotionally bruising battle no matter which side you’re on, one that today pits not just doctor against layperson, but also doctor against doctor. And as the Laidlers demonstrate, it can pit well-trained doctors against their own psyche. “I was happier because we felt like we were doing something right,” Jim Laidler says of the treatments he gave his sons over the course of so many years. “That’s how the madness begins. You want to believe that it’s working, so you force yourself to see results, and silence the scientific part of your brain.”
I know that Laidlers put up with such attacks for years. He had been fairly quiet over the last few years, which makes me wonder why he agreed to be the subject of a story published on a major website today, given that no doubt the reminder of his apostasy, correctly described as apostasy, will attract the attention of the autism biomed believers with whom he used to worship at the church of chelation. Whatever his reasons, I’m glad he did agree. I only wish Levinovitz had contacted me, because one thing that’s lacking in his piece is an understanding of just how influential Jim Laidler has been to a generation of skeptics (including myself) trying to counter the misinformation of the antivaccine movement and how useful his writings have been to us.
It has been said that alt-med appeals to some unmet need that scientific medicine either does not meet or does a poor job of handling. Whether that is a need for hope when there is little or none or the feeling that “something” is being done, that is perhaps true in many cases. However, unmet psychological needs are not a justification for the acceptance of pseudoscience creeping into conventional medicine, something we at SBM have been warning about for over seven years now. The story of the Laidlers shows how even doctors and scientists can be ensnared as patients and parents of patients, but what about the providers?
The return of David Katz and his “more fluid concept of evidence”
Four weeks ago, I discussed the unfortunate case of Dr. David Katz, who happens to be faculty at Yale along with our very own Dr. Steve Novella. Dr. Katz, you might recall, first found himself on the radar of skeptics when he advocated a “more fluid concept of evidence” with respect to medicine back in a now infamous 2008 talk. His message has been correctly characterized as, “Don’t abandon patients; abandon science instead.” Well who to my wondering eyes should appear in Levinovitz’s story but Dr. “More Fluid Concept of Evidence” himself? His message is very revealing, albeit perhaps inadvertently. After noting quite correctly that twenty years ago, when the Laidlers’ journey into alternative medicine began, what they sought for their sons was clearly outside the medical mainstream, “largely separate from mainstream hospitals and medical schools,” as he put it, Levinovitz notes that, thanks to what is now known as “integrative medicine,” such is no longer the case:
At Yale, physician and prominent health advocate David Katz practices integrative medicine, aiming to combine acceptance of alternative treatments with scientific rigor and regulation. Katz opposes chelation, along with all non-standard protocols proven to be physically harmful, but he supports being open-minded about many other alternative techniques, including acupuncture, homeopathy, and reiki.
Such open-mindedness, he says, offers a badly needed corrective to a broken medical system. “With internal medicine, once I’ve tried everything the textbooks tell me, I’m done,” he says. “But with integrative medicine, I always have something to try. I never run out of options.”
This argument is atrociously dumb, even by David Katz standards. Yes, it might be true that with integrative medicine a physician “never runs out of options,” but if those options are fantasy and fairy dust, they do the patient no more good than “throwing up one’s hands” and saying there’s nothing that can be done. Let’s put it this way. If magic like homeopathy and reiki (which, recall, is nothing more than “faith healing”) are “options,” then where does it end? How far outside the realm of well-established science does a proposed treatment have to be before Katz will reject it as not worth considering as an “option”? That he has embraced homeopathy and reiki tells me that there is probably no treatment so outrageously ridiculous that he won’t consider it.
It’s also not true that “once you’ve tried everything in the textbooks,” you’re done. If that’s the limit of your thinking, such that it either has to be in the textbook, or you’ll start considering fairy dust, then it’s your thinking that is limited, not that of skeptics. Just ask Mark Crislip, who just provided us suggestions for what to do when the evidence runs thin. In medicine, unfortunately, sometimes all the options are bad, and it’s a matter of picking the “least bad” option. Some things can’t be cured, but they can almost always at least be palliated. As is pointed out elsewhere in the WIRED article, expectation management is an important part of medicine, and it is there that medicine frequently falls down. Integrative medicine lets doctors off the hook. They no longer have to manage expectations, or at least they can give patients hope that they wouldn’t otherwise be able to give. It doesn’t always matter if it’s false hope:
And false hope isn’t just for patients. Doctors—traditional and integrative alike—also can become dependent. No doctor wants to be hope’s executioner, especially when they don’t know how to do it properly. The vast majority of doctors receive no formal training in how to deliver catastrophic news. Most hospitals don’t provide a social worker to take over once parents find out their child has autism. Instead of thinking about what to do when there are no options for a cure, it’s easier, as Katz puts it, to never run out of options.
No doctor wants to be hope’s executioner. How true. I’ve had to tell patients’ families in the past of dire circumstances with little or no hope. I’ve had to help families come to a decision to withdraw support. I’ve even had to be the one to withdraw support. I’ve had to tell patients and their families that there was nothing more that could be done to save their life. Yes, these were all a long time ago, before I hyperspecialized in breast cancer surgery, where, fortunately, such conversations are now fairly rare, but I remember such incidents clearly because of how hard they were, mentally, intellectually, and emotionally. They were painful. But they were part of my job, my profession. Giving patients the hard news was my duty. How much easier it would have been if I could have come up with “options” that would prevent me from having to present just the cold, hard, facts and prognosis to patients and their families.
Steve Novella, who was quoted in Levinovitz’s story, relates:
When confronted with the possibility of a troubling diagnosis, people often prefer to avoid hard truths. Novella tells a gut-wrenching story about one of his patients, who had ALS. After the initial diagnosis, the man left the office, unable to cope with the fact that he had an incurable degenerative disease, likely to kill him within five years. He chose to visit a naturopath instead, who had redemptive news: conventional, narrow-minded medicine had misdiagnosed him. It wasn’t ALS, the naturopath said, but rather chronic Lyme disease, which could be treated with holistic, all-natural supplements.
Nearly a year later, badly degenerated, the man was back in Novella’s office. He’d wasted countless hours and thousands of dollars on false hope. Now, he was willing to listen, but with far less time to prepare for the reality of what lay ahead, and a spirit broken by disappointment. Research suggests this is no mere anecdote. Studies out of Norway, Japan, and Korea have reported higher mortality rates and lower quality of life for cancer patients who pursue complementary and alternative medicine.
Whether he knows it or not, perhaps Dr. Katz has inadvertently revealed the probable primary motivation for the “integration” of quackery into conventional medicine, although not quite in the way he thinks he did. Reading this line of argument, I can’t help but conclude that the embrace of more “options” in integrative medicine is not so much about the patient, Katz’s protestations otherwise. Think about it. Katz argues that integrative medicine means “never running out of options.” While there’s no doubt that options can be a good thing when they are options not based on fairy dust that might actually do something, by embracing prescientific, pseudoscientific, and outright magical “options,” integrative medicine helps doctors avoid making the hard choices that their patients need them to make, or at least helps them put off those choices, often for long periods of time. That’s what it’s really about, not doing whatever it takes to make patients feel better. All that this requires is for physicians to be so open-minded that their brains are allowed to fall out.
Yes, there are problems with conventional medicine. Doctors often spend too little time with patients because the reimbursement system requires that they see lots of patients to be able to make a living. The medical system often doesn’t deal with terminal illnesses or chronic illnesses as well as it should. However, to paraphrase Ben Goldacre, just because there are problems with aircraft design, that doesn’t mean magic carpets really fly, and just because there are problems in our medical system does not mean that the solution is to embrace pseudoscience and magic. Jim Laidler was one of my early skeptical influences who helped teach me that. Ironically, David Katz is also teaching me the same thing, but mainly as a negative example.
The road to apostasy, as Jim Laidler shows us, is hard. That’s why it’s important to do what we can to prevent conversion to pseudoscience in the first place. Unfortunately, that is often not possible. Even more unfortunately, David Katz and other advocates of integrating quackery with medicine show that deconverting doctors who have embraced integrative medicine will likely be just as difficult. At least Dr. Laidler shows us that it can happen. Can it happen with doctors like David Katz? I hope so.
from ScienceBlogs http://ift.tt/1K19QKo
I’ve been blogging for over a decade now, a fact that I find really hard to believe looking back on it right now. I’ve told the story before, but it’s worth briefly recounting again because doing so will explain why the story I’m about to discuss caught my attention. My “gateway drug,” if you will, into skepticism was discovering Holocaust denial in the late 1990s on Usenet, a vast and sprawling conglomeration of thousands of discussion forums that began to fade away at the turn of the century with the rise of web-based forums and Google providing an interface to it to make it Google Groups. The forum where I first discovered Holocaust denial and learned to combat it, alt.revisionism, still exists, but long ago degenerated into a cesspool of racism, spam, and trolling. A couple of years later, around 2000 or so, I discovered quackery and the antivaccine movement, thanks to a Usenet newsgroup known as misc.health.alternative, which is where I honed my early skills applying science to medical claims. It’s also where I first encountered Peter Moran, a regular commenter here who greatly inspired me back then with his full-throated criticism of cancer quackery and his website that taught me reasons why cancer quackery could appear to work even when it did nothing to impact the progression of the cancer.
In December 2004, intrigued by all the news stories about blogging and having discovered a number of good blogs, I decided on one dark, gray Saturday afternoon to dip my toe in the blogosphere. On the spur of the moment I created the first iteration of of this very blog on—what else?—Blogger. Much to my own amazement, over the course of a year I got my little hobby noticed, to the point where I was invited to join a this blog collective, which, even more amazingly, is still here nine years later.
During my early days, though, there was one person who also inspired me, helping me to learn about the pseudoscience that undergirds the antivaccine movement and, in particular, the quackery making up what is known these days as the “autism biomed” movement. His name is James Laidler, and he was one of the ones who introduced me to this topic which I’ve written about many times both at my not-so-super-secret other blog and, of course, right here. In doing so, over the years I’ve catalogued why “autism biomed” seems compelling to many parents with children with autism, how antivaccine groups use fake “medical conferences” to sell autism biomed by giving a patina of medical respectability to rank quackery like bleach enemas, and providing a place where those selling unscientific treatments can find willing customers and where disreputable discredited “scientists” like Andrew Wakefield and Mark Geier can find adoring fans who believe their quackery.
I bring this up because last week WIRED published an excellent article about Jim Laidler, “An Alternative-Medicine Believer’s Journey Back to Science.” Appropriately enough, it’s by Alan Levinovitz, an assistant professor of religion at James Madison University. I say “appropriately enough” because, as has been noted here on a number of occasions, there are many religion-like aspects to alternative medicine in general but to the autism biomed movement in particular. Indeed, the two are often tied together, with the motivation for some alt-med being explicitly religious and belief in alt-med sharing some major characteristics with religion, particularly belief in miracles against evidence, charismatic leaders (like Andrew Wakefield) who can do no wrong, and mutually-supportive communities of believers who reinforce each others’ beliefs and ward off skepticism. Add to that the magical thinking, and it’s not for nothing that I’ve referred to the central dogma of alternative medicine as being that wishing makes it so. Indeed, it’s for good reason that I frequently point out that most “energy medicine” (particularly reiki) is basically faith healing that substitutes Eastern mysticism for Judeo-Christian religious beliefs.
In Levinovitz’s profile of Jim Laidler, we see a lot of this, and I learned some details that I didn’t know about Laidler before. Levinovitz also grasps the religion-like nature of alt-med by starting the article bluntly saying:
Jim and Louise Laidler lost their faith on a trip to Disneyland in 2002, while having breakfast in Goofy’s Kitchen.
Jim Laidler and his wife Louise are both doctors, and two of their sons, Ben and David, were diagnosed with autism. In the late 1990s until what happened in 2002, the Laidlers were very much true believers in autism biomed. I knew this back in the day, because I had read Jim Laidler’s writing extensively before; indeed, it was his recounting of his experiences treating his sons with autism biomed quackery that helped me to understand how confirmation bias, regression to the mean, placebo effects, and observer effects could lead parents to believe that pseudoscientific treatments were working to “recover” their children from autism when they were doing nothing to impact the course of the condition. He was the first one to teach me that, contrary to the myth that leads parents to attribute any improvement in autistic children to whatever quackery du jour they are using, autism spectrum disorders are conditions that result in neurodevelopmental delay, not neurodevelopmental stasis. In fact, autistic children can and do recover to the point where they “lose the ASD diagnosis” in anywhere from 3% to 25% of cases. (Yes, the literature is a variable on this point.)
So, there they were, the Laidlers, treating Ben and David with a wide variety of quackery to “recover” them from autism, as recounted by Levinovitz:
For several years, on the advice of doctors and parents, the Laidlers treated their children with a wide range of alternative medicine techniques designed to stem or even reverse autistic symptoms. They gave their boys regular supplements of vitamin B12, magnesium, and dimethylglycine. They kept David’s diet free of gluten and casein, heeding the advice of experts who warned that even the smallest bit of gluten would cause severe regression. They administered intravenous infusions of secretin, said to have astonishing therapeutic effects for a high percentage of autistic children.
Using substances known as chelating agents, the Laidlers also worked to rid Ben and David of heavy metals thought to be accumulated through vaccines and environmental pollutants. With a PhD in biology as well as his MD, Jim Laidler had become an expert on chelation, speaking nationally and internationally about it at conferences dedicated to autism and alternative approaches.
I’ve discussed such treatments many times before here at SBM, particularly chelation therapy, which has no basis in science for treating autism and whose rationale is predicated on the belief that the mercury in the thimerosal preservative that used to be used in many childhood vaccines causes autism. It’s a dangerous treatment that has caused at least one death. Autism biomed in general can be viewed as uncontrolled and unethical experimentation on a vulnerable population, autistic children. It’s definitely worth pointing out that, with an MD and a PhD—just as I have!—Laidler had the intellectual and scientific background to recognize that what he was doing was without a basis in science and medicine. Yet he didn’t, at least not for several years. Indeed, he helped promote chelation therapy and “spread the good news,” so to speak. How did this come about?
The journey to belief
In Levinovitz’s account, the Laidlers’ journey began after their eldest son, Ben, was born. He didn’t hit his milestones on time, such as rolling over, crawling, and walking. By the time he was three and a half years old, his speech consisted largely of echoing, and the Laidlers could no longer attribute his developmental delays to being at the low end of the bell-shaped curve for normal variation in development. In fact, by this time, Laidler was beginning to suspect, based on Ben’s lack of eye contact and other behaviors, what was probably going on, recounting it thusly, “I knew what this looked like. But I didn’t want to bring it up, not even to Louise. You get superstitious, like if you say something it’ll come true.”
Their son David was born three years after Ben, and initially he hit all his developmental milestones early. The family moved to Portland, and the Laidlers discovered what then made up the autism biomed movement on the Internet, mainly online forums where parents traded success stories. Remember, this was 1997, long before the many, many antivaccine, pro-autism biomed websites that exist now, such as Age of Autism, The Thinking Moms’ Revolution, and the like. Andrew Wakefield’s infamous and now retracted Lancet case series wouldn’t arrive until next year, and the full fear mongering over mercury in vaccines was still a few years away. For example, Robert F. Kennedy, Jr. didn’t publish “Deadly Immunity” until 2005. Jenny McCarthy’s antivaccine activism wouldn’t begin until a decade later. To bring it back around to how I started this post, there was Usenet, and there were private discussion forums, and that was about it. And, yes, I do recall reading Laidler’s description of how those forums were used mainly for parents to share “success stories” that, when he later looked at them critically, were not. No quackery was too outrageous, and all had validity.
Unfortunately, after hitting his milestones early for a while, David regressed. It was not long after that before he was diagnosed with autism as well. It was at this point, not surprisingly and in a very human reaction, the Laidlers fell into a depression.
Then another parent told Louise about Defeat Autism Now! She decided to attend.
The conference was a festival of alternative medicine, a campground of tents and booths and speakers offering attendees everything from cutting-edge supplements to dolphin therapy. Everyone—parents and presenters alike—swore by their preferred treatment, and countless stories circulated about severely autistic children who instantly turned around on the right protocol.
Louise returned filled with new hopes. At first, Jim was skeptical—”I hadn’t been there. I hadn’t felt the excitement”—but soon, he was hopeful too. They decided to put David and Ben on more supplements. They tried secretin infusions. They attended another DAN! conference. They came to believe in many other alternative therapies.
DAN!, as you might recall, consisted of a large number of practitioners offering all manner of quackery under the rubric of “autism biomed.” These doctors were listed on the registry of the antivaccine autism biomed group known as the “Autism Research Institute” an organization founded by Dr. Bernard Rimland in 1967. DAN! physicians generally became DAN! physicians by undergoing training through the ARI, which held yearly DAN! conferences to discuss the latest autism biomed quackery. Interestingly enough, in either an apparent attempt to become more “legitimate” or in response to lawsuits against DAN! doctors, ARI stopped maintaining its DAN! registry at the end of 2011. Back in the late 1990s through much of the first decade of the 21st century, though, if you wanted to find an autism biomed doc, the DAN! list was the first place to go. Unfortunately, many parents, like the Laidlers, did just that.
The Laidlers, however, eventually realized their mistake. Many parents, such as those who populate the antivaccine crank blog Age of Autism as bloggers or the inappropriately named “Thinking Moms” of The Thinking Moms’ Revolution never do. So what “converted” the Laidlers back to science? To understand this, we have to go back to what happened in Goofy’s Kitchen thirteen years ago.
Goofy’s Kitchen
The deconversion
So what, exactly, happened in Goofy’s Kitchen at Disneyland? It’s something that to most people would seem relatively minor but to the Laidlers immediately took on outsized significance. However, it’s also a good example of how a believer’s mind needs to be “primed” before an incident like this can tip him or her back towards skepticism. Before this event, Jim Laidler had started to doubt the whole DAN! subculture and what it was preaching. Levinovitz recounts how Laidler had begun to cringe when he heard of other parents mortgaging their homes to pay for expensive unproven autism biomed treatments and how “alarms went off” when parents and doctors would advocate dangerous protocols, such as extreme forms of chelation. So he spoke out against the more dangerous and extreme treatments being promoted and offered by DAN! doctors. That’s when he started to learn that skepticism is not appreciated in movements like DAN! Indeed, a prominent conference organizer took him to task for such criticisms, warning him “never to criticize anyone’s approach, no matter how crazy or dangerous it seemed.” We see a less extreme form of this same attitude in the seemingly more “reasonable” world of “complementary and alternative medicine” (CAM) or “integrative medicine,” where, seemingly, every hypothesis and treatment is potentially valid, even homeopathy, and CAM advocates are loathe ever to dismiss any treatment, even when it’s magical faith healing like reiki or sympathetic magic like homeopathy. More on that later.
First, let’s see what happened at Goofy’s Kitchen:
It was in the grip of these doubts when, inside Goofy’s Kitchen, Jim and Louise returned to their table from the buffet and noticed 6-year-old David hadn’t come with them. They saw him standing at the buffet, devouring a waffle. The Laidlers feared the worst. “We’d been told that the slightest smidgen of gluten would crash him,” Jim says. “It was absolutely devastating to watch.” But by the end of the vacation, they realized David was fine. Nothing happened.
When they returned home, the Laidlers took David off his restrictive diet, and he continued to improve—rapidly. Louise stopped Ben’s supplement regimen—without telling Jim—and Ben’s behavior remained the same. Then, after months of soul-searching, Jim Laider took to the internet to announce his “de-conversion” from alternative medicine—a kind of penance, but also a warning to others. “I had this guilt to expunge,” Jim says. “I helped to promote this nonsense, and I didn’t want other people to fall for it like I did.”
Jim Laidler had become an alt-med apostate. As anyone who’s studied religion knows, in general believers detest apostates far more than unbelievers. After all, unbelievers might still be made into believers and might just be ignorant of the belief system of the religion. Apostates, on the other hand, were once believers who were fully invested in belief but then actively decided to reject the religion. In this, he is like Britt Hermes, who was a naturopath but abandoned the faith after recognizing the pseudoscience at its heart, or Sam Homola, a chiropractor who rejected chiropractic’s more outlandish claims for the same reasons, or Paul Ingraham, a former registered massage therapist who couldn’t bear the pseudoscience anymore. After he announced his deconversion, Laidler suffered the usual fate of the apostate, shunning and attacks:
When Jim Laidler became an alt-medicine apostate, proponents of the treatments he criticized went on the attack. He received death threats from parents. It’s an intellectually and emotionally bruising battle no matter which side you’re on, one that today pits not just doctor against layperson, but also doctor against doctor. And as the Laidlers demonstrate, it can pit well-trained doctors against their own psyche. “I was happier because we felt like we were doing something right,” Jim Laidler says of the treatments he gave his sons over the course of so many years. “That’s how the madness begins. You want to believe that it’s working, so you force yourself to see results, and silence the scientific part of your brain.”
I know that Laidlers put up with such attacks for years. He had been fairly quiet over the last few years, which makes me wonder why he agreed to be the subject of a story published on a major website today, given that no doubt the reminder of his apostasy, correctly described as apostasy, will attract the attention of the autism biomed believers with whom he used to worship at the church of chelation. Whatever his reasons, I’m glad he did agree. I only wish Levinovitz had contacted me, because one thing that’s lacking in his piece is an understanding of just how influential Jim Laidler has been to a generation of skeptics (including myself) trying to counter the misinformation of the antivaccine movement and how useful his writings have been to us.
It has been said that alt-med appeals to some unmet need that scientific medicine either does not meet or does a poor job of handling. Whether that is a need for hope when there is little or none or the feeling that “something” is being done, that is perhaps true in many cases. However, unmet psychological needs are not a justification for the acceptance of pseudoscience creeping into conventional medicine, something we at SBM have been warning about for over seven years now. The story of the Laidlers shows how even doctors and scientists can be ensnared as patients and parents of patients, but what about the providers?
The return of David Katz and his “more fluid concept of evidence”
Four weeks ago, I discussed the unfortunate case of Dr. David Katz, who happens to be faculty at Yale along with our very own Dr. Steve Novella. Dr. Katz, you might recall, first found himself on the radar of skeptics when he advocated a “more fluid concept of evidence” with respect to medicine back in a now infamous 2008 talk. His message has been correctly characterized as, “Don’t abandon patients; abandon science instead.” Well who to my wondering eyes should appear in Levinovitz’s story but Dr. “More Fluid Concept of Evidence” himself? His message is very revealing, albeit perhaps inadvertently. After noting quite correctly that twenty years ago, when the Laidlers’ journey into alternative medicine began, what they sought for their sons was clearly outside the medical mainstream, “largely separate from mainstream hospitals and medical schools,” as he put it, Levinovitz notes that, thanks to what is now known as “integrative medicine,” such is no longer the case:
At Yale, physician and prominent health advocate David Katz practices integrative medicine, aiming to combine acceptance of alternative treatments with scientific rigor and regulation. Katz opposes chelation, along with all non-standard protocols proven to be physically harmful, but he supports being open-minded about many other alternative techniques, including acupuncture, homeopathy, and reiki.
Such open-mindedness, he says, offers a badly needed corrective to a broken medical system. “With internal medicine, once I’ve tried everything the textbooks tell me, I’m done,” he says. “But with integrative medicine, I always have something to try. I never run out of options.”
This argument is atrociously dumb, even by David Katz standards. Yes, it might be true that with integrative medicine a physician “never runs out of options,” but if those options are fantasy and fairy dust, they do the patient no more good than “throwing up one’s hands” and saying there’s nothing that can be done. Let’s put it this way. If magic like homeopathy and reiki (which, recall, is nothing more than “faith healing”) are “options,” then where does it end? How far outside the realm of well-established science does a proposed treatment have to be before Katz will reject it as not worth considering as an “option”? That he has embraced homeopathy and reiki tells me that there is probably no treatment so outrageously ridiculous that he won’t consider it.
It’s also not true that “once you’ve tried everything in the textbooks,” you’re done. If that’s the limit of your thinking, such that it either has to be in the textbook, or you’ll start considering fairy dust, then it’s your thinking that is limited, not that of skeptics. Just ask Mark Crislip, who just provided us suggestions for what to do when the evidence runs thin. In medicine, unfortunately, sometimes all the options are bad, and it’s a matter of picking the “least bad” option. Some things can’t be cured, but they can almost always at least be palliated. As is pointed out elsewhere in the WIRED article, expectation management is an important part of medicine, and it is there that medicine frequently falls down. Integrative medicine lets doctors off the hook. They no longer have to manage expectations, or at least they can give patients hope that they wouldn’t otherwise be able to give. It doesn’t always matter if it’s false hope:
And false hope isn’t just for patients. Doctors—traditional and integrative alike—also can become dependent. No doctor wants to be hope’s executioner, especially when they don’t know how to do it properly. The vast majority of doctors receive no formal training in how to deliver catastrophic news. Most hospitals don’t provide a social worker to take over once parents find out their child has autism. Instead of thinking about what to do when there are no options for a cure, it’s easier, as Katz puts it, to never run out of options.
No doctor wants to be hope’s executioner. How true. I’ve had to tell patients’ families in the past of dire circumstances with little or no hope. I’ve had to help families come to a decision to withdraw support. I’ve even had to be the one to withdraw support. I’ve had to tell patients and their families that there was nothing more that could be done to save their life. Yes, these were all a long time ago, before I hyperspecialized in breast cancer surgery, where, fortunately, such conversations are now fairly rare, but I remember such incidents clearly because of how hard they were, mentally, intellectually, and emotionally. They were painful. But they were part of my job, my profession. Giving patients the hard news was my duty. How much easier it would have been if I could have come up with “options” that would prevent me from having to present just the cold, hard, facts and prognosis to patients and their families.
Steve Novella, who was quoted in Levinovitz’s story, relates:
When confronted with the possibility of a troubling diagnosis, people often prefer to avoid hard truths. Novella tells a gut-wrenching story about one of his patients, who had ALS. After the initial diagnosis, the man left the office, unable to cope with the fact that he had an incurable degenerative disease, likely to kill him within five years. He chose to visit a naturopath instead, who had redemptive news: conventional, narrow-minded medicine had misdiagnosed him. It wasn’t ALS, the naturopath said, but rather chronic Lyme disease, which could be treated with holistic, all-natural supplements.
Nearly a year later, badly degenerated, the man was back in Novella’s office. He’d wasted countless hours and thousands of dollars on false hope. Now, he was willing to listen, but with far less time to prepare for the reality of what lay ahead, and a spirit broken by disappointment. Research suggests this is no mere anecdote. Studies out of Norway, Japan, and Korea have reported higher mortality rates and lower quality of life for cancer patients who pursue complementary and alternative medicine.
Whether he knows it or not, perhaps Dr. Katz has inadvertently revealed the probable primary motivation for the “integration” of quackery into conventional medicine, although not quite in the way he thinks he did. Reading this line of argument, I can’t help but conclude that the embrace of more “options” in integrative medicine is not so much about the patient, Katz’s protestations otherwise. Think about it. Katz argues that integrative medicine means “never running out of options.” While there’s no doubt that options can be a good thing when they are options not based on fairy dust that might actually do something, by embracing prescientific, pseudoscientific, and outright magical “options,” integrative medicine helps doctors avoid making the hard choices that their patients need them to make, or at least helps them put off those choices, often for long periods of time. That’s what it’s really about, not doing whatever it takes to make patients feel better. All that this requires is for physicians to be so open-minded that their brains are allowed to fall out.
Yes, there are problems with conventional medicine. Doctors often spend too little time with patients because the reimbursement system requires that they see lots of patients to be able to make a living. The medical system often doesn’t deal with terminal illnesses or chronic illnesses as well as it should. However, to paraphrase Ben Goldacre, just because there are problems with aircraft design, that doesn’t mean magic carpets really fly, and just because there are problems in our medical system does not mean that the solution is to embrace pseudoscience and magic. Jim Laidler was one of my early skeptical influences who helped teach me that. Ironically, David Katz is also teaching me the same thing, but mainly as a negative example.
The road to apostasy, as Jim Laidler shows us, is hard. That’s why it’s important to do what we can to prevent conversion to pseudoscience in the first place. Unfortunately, that is often not possible. Even more unfortunately, David Katz and other advocates of integrating quackery with medicine show that deconverting doctors who have embraced integrative medicine will likely be just as difficult. At least Dr. Laidler shows us that it can happen. Can it happen with doctors like David Katz? I hope so.
from ScienceBlogs http://ift.tt/1K19QKo
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