Demon-Haunted Inevitability

A very long time ago, I read a very good book entitled The Demon-Haunted World. As part of my efforts to help me put words to some of my thoughts, I started rereading it... and found it even better than I half-remembered. It is a touching, inspiring, and truly excellent tribute to the power, importance, and sheer beauty of science.

I am not, however, writing this blog entry in order to praise the glories of Sagan. I am discussing the book in order to explain where this blog entry is coming from. Specifically, it's coming from one quote (which is on p. 26 of the paperback edition I'm reading):

We've arranged a global civilization in which most crucial elements -- transportation, communications, and all other industries; agriculture, medicine, education, entertainment, protecting the environment; and even the key democratic institution of voting -- profoundly depend on science and technology. We have also arranged things so that almost no one understands science and technology. This is a prescription for disaster. We might get away with it for a while, but sooner or later this combustible mixture of ignorance and power is going to blow up in our faces.

Moreover, it isn't just science and technology that this dilemma applies to. A similar (and highly interconnected) mixture exists within medicine -- just as the populace depends on science and yet remains profoundly ignorant of it, the populace depends on medicine and yet remains equally clueless about it. Where this volatile mixture intersects with desperation, the consequences are entirely predictable.

This is especially true to anyone who's truly studied the history of medicine. Unlike the popular perception, the history of medicine is not one of straightforward progress, the history of medicine is one of delusion, stonewalling, and delay; of rampant bias and harmful treatments; and of quackery and pseudoscience. The history of medicine is a graveyard of harmful treatments which doctors once thought helpful. It is a history of failure upon failure... and of the occasional (and rare) gem hidden amongst the countless clods of fecal matter. It is a history of countless "diseases" that turned out to be benign... and countless "benign" phenomena which turned out to be diseases.

For instance, haemorrhoids, nosebleeds, and women's periods were once viewed by the medical establishment as benign forms of natural prophylaxis... and, moreover, the absence of these was viewed as dangerous and needing treatment. (1)

An absence of periods from a woman of child-bearing age was viewed as especially serious, and even dangerous (unless, of course, that woman was pregnant). While I won't deny that amenorrhea can be a sign of a number of problematic underlying issues, I do think that most of us would agree that "treating" it by placing leaches on the cervix is a bad idea... and I emphatically will deny that amenorrhea causes insanity or epilepsy (depression, however, may actually arise, especially if the woman in question is actively trying to have children). Heck -- in recent years, at least two people have actually suggested that deliberately suppressing menstration -- inducing amenorrhoea -- would be a good idea for many women (2).

Then there's our attitude towards "chemicals", the way we constantly fail to understand the meaning of the medical axiom that "the dose makes the poison", the way that the media is constantly trying to divide our foodstuffs into things which cause cancer and things that help prevent it... and even the way that many Americans' critical thinking skills are so incredibly atrophied that they are actually impressed by this lady (3) or by the "coverage" of medical issues provided by the Huffington Post.


We live in a culture of misinformation, where information is often passed on without regards to its veracity. Myths often take on the status of fact; people freely panic over things that later turn out to be false alarms. People believe in all sorts of "New Age" nonsense, and all sorts of woo -- from psychics and astrologers to countless books on the nonexistent continent of Lemuria -- are available freely at many major bookstores. The "Raw Food" movement is picking up steam, major pharmacies are selling homeopathic products, and there are even people who take this guy seriously as an information source (4).

There's very little new about this. Aristotle wrote about logical fallacies in the Organon -- and that was well over two thousand years ago. History reveals countless examples of mass hysterias, moral panics, scaremongering, health fraud, sensationalism, superstitions, and other problems of this nature. The basic thrust towards these tendencies is a consequence of countless aspects of human nature. It should be unsurprising that they show up in the world of autism.

Parents of autistic children aren't that different from anyone else (or, more accurately, any other parents) before they notice signs that their child is autistic... or they get the diagnosis -- whichever comes first. They are not particularly educated, not particularly rich, and very much not particularly skeptical. What they are, especially at first, is particularly desperate.

The fact that the metaphorical vultures are able to exploit this should hardly be surprising. Many, many parallels can be found elsewhere. The consequences may be tragic, but the problems themselves are hardly unexpected.

I just wish I could figure out a better way to deal with them.

(1) No, I'm not joking. They really believed this. It wasn't until relatively recently that this attitude changed. If you want an account of how and why, there are a number of possible sources... but I reccommend Wootton's Bad Medicine.

Incidentally -- doctors' treatments for the "problem" of an adult man's butt not bleeding? Well, since he weren't getting rid of that excess blood the "natural" way, a doctor had to resort to artificial means... or, in other words, bloodletting.

(2) I don't find their arguments particularly convincing, but that's just me.

(3) Yes, she really did say what you think she said.

(4) Yes, I munged that URL. I'm emphatically not raising his Google rank any more than I have to.

A Bit More on Translational Research

Translational research is a phenomenally complex topic, but generally refers to the basic idea of taking discoveries made in basic research and researching how they apply "in the real world". It's worth noting that this (usually) does not mean applied research, although the basic concepts are pretty similar in a lot of ways. The main difference is that transitional research paradigms reject the dichotomy between basic and applied research when doing so. "Basic" research within a translational research paradigm both informs and is informed by "applied" research, blurring the lines between the two.

Any more complex explanation of research paradigms in this context, however, would require an explanation of the field of medical informatics. Frankly, I don't want to go there.

I will admit that I have some reservations and concerns regarding the entire translational research paradigm. I will also admit that there is a good chance that this is because of the limitations to my understanding of it. It is quite possible -- even probable -- that my concerns and reservations have been addressed.

Of course, it also doesn't help that there isn't a standardized definition of "translational research", and some definitions conflict -- often in major ways -- with the above (e.g. this one).

Most people, however, don't need to really understand research paradigms. What they need to understand -- even if only in general terms -- are the challenges that those paradigms were designed to address.

Simply put -- as impressive as modern medical science is, we really don't understand that much about how the human body works. This is why most "promising new treatments" turn out to be worthless -- or, all too often, worse than worthless. It's the aspects of biology that we don't understand that keep tripping us up, time after time after time.

This is why any new treatment has to be tested -- thoroughly. This is why rushing the process is a very bad idea. It's also why many of the medications we use have nasty side effects.

Simply put: as much as we'd like to believe otherwise, modern doctors, pharmacists, and so on don't really know what they're doing.

On the Autism Health and Wellness Expo, Part Two

It is difficult to convey exactly how charismatic, convincing, and generally smooth the Geiers are. I've been trying to put the matter to words, and failing repeatedly. I have deleted the text of this message several times and started over just as many.

I suppose one anecdote from meeting them -- while minor -- will help. I knew several of the parents there. One of them was a highly qualified clinician who I've had a degree of experience with. She has always been among the more reasonable of the professionals in the area (in certain respects, anyway -- I've never worked with her clinically) and is a highly intelligent speech-language pathologist with a nineteen-year-old autistic son.

Said son apparently showed an interest in pornography for the first time rather recently. After attending the Geiers' presentation, she is now looking into getting him chemically castrated.

On the Autism Health and Wellness Expo, Part One

Perhaps it is unsurprising that the quacks came out in force for an event entitled the "Autism Health and Wellness Expo". On the other hand, it says something that Mark and David Geier were not the biggest quacks there.

And yes, they were there. I listened to one of their talks and wound up meeting the father in their father/son castration team. It was an... interesting experience.

The Geiers' talk involved some truly spectacular fearmongering. Among other things, they claimed that they believe that autism's prevalence was at one in 20 to 30 during the "peak years" (whatever that means). They claimed that most autistics have mitochondrial dysfunction of some kind or another. They engaged in some truly insipid anti-vaccine fearmongering.

They also defined aggression as including meltdowns and frustration.

To Dr. Geier's credit, however, he did (in a subsequent discussion) criticize DAN! -- basically for being frauds, although he also called them pawns of Big Pharma. He acknowledged that hyperbaric oxygen "therapy" for autism is bunk (at least how they practice it). He gave me some rather interesting information regarding vitamin manufacturers. He stopped just short of actively calling Bradstreet a quack (and did strongly imply this). He repeatedly emphasized the need for using a reputable lab to conduct legitimate tests (of course, if you don't interpret them correctly...).

The Geiers' science was every bit as bad as I'd been expecting. There are major parts of their presentation that I really wish I could still remember -- such as the details of how they concluded that autism is really mercury poisoning (it was shoddy logic based on urinary porphyrin testing, but I don't remember several key details).

They were also pretty blatantly recruiting for CoMeD, even going so far as to hand out pamphlets. The less said about this, the better.

Until today, I wondered how a parent could ever fall for their quackery. I no longer wonder. The Geiers are a truly polished act, con artists extraordinaire. Some of the tactics they used... the liberal use of the foot-in-the-door phenomenon... the polished presentation of their pseudoscience (it was often extremely difficult to detect this without extensive knowledge of the topics -- and studies -- they were talking about)... the polished use of "reasonable" stances towards various groups (no one was perfect in his eyes, everyone had flaws and strengths)...

It scares me. It really does. I'll have to write more later, but keep in mind that they weren't the quackiest people to speak at that expo. The honor of "biggest quack" goes to Dr. Phil Bate. More on him later.

On Highly Misleading News Articles

Catching up on a newsfeed, I came across this article. Suffice it to say I wasn't impressed -- at all.
In essence, the article reports data from the National Birth Defect Registry and notes that "over 60%" of autistic children entered into their database had some form of structural birth defect as well as an autism diagnosis. I was pretty surprised at this news -- just not by the fact that the number was so high.

My surprise was at two things: One, that they considered this news... and, two, that the number was so low.

You see, the registry relies on parents to input data on their children. Specifically, it requires parents to register their children with birth defects.

Obviously, this means that not every child with a birth defect gets entered. More importantly, parents will only enter their children if they believe that said children have birth defects.

Now... how many parents of autistic children consider autism a birth defect?

The news story suggests that the answer is higher than I thought. Of course, it may just be that some of the remaining 40% have other issues. I don't know -- I haven't seen the data.

This, of course, is what is known as selection bias. More specifically, it's a blatant case of sampling bias.

In other words -- why the heck is this news?

The answer: media sensationalism. Frankly, publication of this article fails pretty much any accepted standard of journalistic ethics, specifically because of accuracy standards and the harm limitation principle. On the other hand, that's never stopped the publication of countless other sensationalized articles...