Sunday, April 30, 2006

ABA's Secret to Success

While reading through some commentary about Applied Behavioral Analysis (ABA) in autism, I began to suspect that I had discovered the "secret" to its reports of "success" in autism.

Part of the "secret" has to do with the way that autism is diagnosed. Even the most well-respected tests of autism rely on external behaviors of the person being tested. As a result, anything that alters those behaviors can alter the results of the test.

ABA is no different - at its core - from all of the other behavioral modification techniques used on humans and other animals. The desired behaviors are rewarded and the undesired behaviors are punished. Now, I'm sure that ABA's supporters will argue that punishment ("negative reinforcement") is no longer a part of ABA. However, the continuous repetition of the command or "physical prompting" (especially to people who are averse to physical contact) has to be considered a punishment.

So, the ABA therapist uses a slight modification of classic conditioning to get an autistic person (usually a child) to either stop doing behaviors that are considered "autistic" or get them to do behaviors that are considered "normal". If ABA manages to get an autistic person to make eye contact, respond to their name or stop flapping, their scores on the various autism rating scales will move toward less autistic (i.e. "improve").

The big question is this - does ABA actually "treat" autism - or just treat the "symptoms"? Does reducing the behaviors unique to autism equate to reducing autism? Or is it just putting on a different coat of paint?

Reducing the automatisms (e.g. "flapping") will generate improvement on standard autism rating scales, so placing the autistic person in a strait jacket should result in a similar "improvement" - right?


A trained psychologist would not be fooled by a strait jacket, but apparently at least a few have been fooled by its behavioral equivalent.

So, what exactly are parents accomplishing by "treating" their children with ABA? Undoubtably, some of the behavioral manifestations of autism that they (the parents, not the child) find most bothersome may be eliminated. This is good for the parents, I suppose, but is there a corresponding benefit to the child?

Not sure about that.

Again, the child may be considered to benefit because the behaviors that mark them as "different" are reduced. However, since these behaviors don't appear to be bothering the child, the "benefits" would seem to be reaped by the other members of the community who are not "disturbed". And, since many autistic children (and adults) report that their "autistic" behaviors (e.g. flapping, avoiding eye contact, etc.) are comforting, the community's "benefit" is realized at a cost to the child.


But, at least ABA improves something about the autistic person's ability to interact with the outside world - right?

Not sure about that.

Let's say I train my goldfish to maintain eye contact with me by only feeding him when he is looking right at me. Has this made him more able to "relate" to people? I doubt it. The same thing applies to ABA and autism. It may alter the behaviors that other people find objectionable, but it is unlikely to change anything fundamental about the autistic person, any more than training me to drool when I hear a bell ring will turn me into a dog.

Woof. Woof, woof!

I suppose that some people will argue that ABA "therapy" (I prefer to call it "training" - that seems more honest) allows autistic people to "get beyond" the obstacles that keep them "locked in" to their autistic world. That's an interesting idea, but completely without any data to support it.

Others will argue that ABA's "successes" are proof enough that it works. Well, let's look at that argument.

The original work by Ivar Lovaas seemed pretty impressive, with nineteen autistic children improved and eight "recovered". However, subsequent studies have failed to reach that level of success. The scenario where early reports (and subsequent reports from the same author or lab) are favorable but other authors (and labs) are unable to demonstrate the same results is depressingly familiar in science. It is usually a solid indicator that the early reports were in error.

Part of the problem is that a lot of the early studies of ABA compared it to doing nothing. Heck, you don't need to be a PhD psychologist to know that spending more time with any child will make them more sociable. As more people (and, especially important, people who did not train under Ivar Lovaas or his graduates) study the results of ABA, I expect that the effects on IQ and speech will continue to diminish.

So, who is benefitting from ABA? Perhaps only the therapists.


Saturday, April 22, 2006

Plus ça change, plus c'est la même chose.

(The more things change, the more they stay the same)

A Heavy Metal Story

In the late 1980's, doctors and public health officials in the UK and the US were struggling to understand why a certain pediatric disorder had been rising dramatically - and alarmingly - over the past decades. Heartbroken parents wanted answers, answers which were not forthcoming from the "medical establishment".

In 1989, a pair of unconventional researchers revealed that they had discovered the cause for this disorder, and that it was related to the use of a particular heavy metal in products intended for infants and small children. Used to prevent one problem, this metal was now blamed for causing a life-altering disorder which was reaching epidemic proprtions in the US, UK and Western Europe.

Realizing the importance of their discovery, these two researchers disdained waiting to publish their results in a peer-reviewed journal and thook their case directly to the public on an television news programme. Needless to say, this caused quite a public uproar and put the scientific and medical "establishments" on the defensive.

Quite soon after the news programme aired, government and academic scientists attempted to reproduce the findings of the two maverick researchers, but were unable to obtain similar findings. These government and academic scientists were accused of attempting a "cover-up".

A panel of scientists convened by the government made a concerted attempt to reproduce the two researchers' findings but were unsuccessful. They concluded that the findings were spurious and that the heavy metal in question was not causing the disorder. This was labeled by many in the public as a "whitewash" and a "cover-up".

A larger panel, led by a major figure in the field, worked for over three years to try to find the truth of the matter. They used more sophisticated tests and larger epidemiologic samples, as well as clinical testing and still were unable to find a connection between the heavy metal and the disorder. Despite the leader's prominence in past efforts to find the cause for this disorder, the results of the panel were alleged to have been "decided beforehand" and dismissed as a "cover-up".

Five years and millions of dollars of fruitless research later, this "explanation" of the disorder has largely receded into the public unconsciousness. A simple change in child care has been at least partially credited with a decline in the incidence of this devastating disorder - a change that had nothing to do with the heavy metal alleged to be the cause. Periodically, an uninformed person (e.g. here, here and here) will "unearth" the hypothesis and have a brief run with it, but the issue is - as far as the scientific and medical communities are concerned - moot. In reality, the two "maverick" researchers had simply failed to eliminate other causes for the results they found.
What was the dread "pediatric disorder"? "Cot death", called "crib death" in the US and later called Sudden Infant Death Syndrome (SIDS).

What was the heavy metal? Antimony, used as a flame retardant in the plastic covers of cot (crib) mattresses.

What does this have to do with anything? Figure it out... Substitute "autism" for "cot death" and "mercury in vaccines" for "antimony in cot mattresses" and it looks like a pretty good fit. Especially the part about the media and non-scientific parent groups taking the lead in promoting an hypothesis that lacks adequate supporting data.

I predict that the end of the mercury-autism story will be similar. The "hard-core" believers will persist unto death in the pathetic faith that their pet hypothesis is correct and the rest of the world will just step around them.

Thanks to John Emsley's book Elements of Murder for making me aware of the elements (pun definitely intended!) of this story.

Monday, April 17, 2006

Autism Parrots

One of the most irritating aspects of the mercury-causes-autism movement has to be their use of partially-trained parrots to carry on their side of the "debate". I put "debate" in inverted commas because there is no real debate going on - at least not in the sense of an intelligent exchange of viewpoints and arguments. Instead, the mercury-causes-autism proponents simply repeat - ad nauseum - the same tired, threadbare and often contradictory sound bites they have received from the "gurus" of mercurial autism.

For example, a typical exchange on this blog and many other venues might go like this:

Mercury-Causes-Autism (MCA): "Our kids aren't autistic, they're mercury-poisoned!"

Skeptic (S): "How do you know this?"

MCA: "Because my kid is getting better on chelation!"

S: "Isn't it possible that he's getting better because of the normal progression of the disorder?"

MCA: "Are you calling me a liar?!?"

S: "No, I'm just suggesting that you might be wrong. How do you know that it's the chelation that's making him better?"

MCA: "Because he's mercury-poisoned, that's why!"

(rinse, repeat)

The sad fact is that most (if not all) of the people arguing that mercury causes autism haven't got a clue what they're talking (shouting? spraying spittle?) about. Even among the "leading lights" of the mercury-causes-autism, there are few who could cogently explain how mercury disrupts protein function, let alone how it could cause autism without also causing the other hallmark signs of mercury poisoning. Of course, nobody can explain the latter - which is why the mercury-causes-autism crowd is now trying to "prove" their case in the courts, including the "court of public opinion".

In his latest newsletter, Uber-Parrot Lenny Schafer admits that the scientific merits of his pet hypothesis is utterly bankrupt. From Kev Leitch's weblog:

"Myself and other autism activists believe there is enough evidence to support a causative relationship between mercury and autism in a court of law, in front of a jury, where standards of evidence are different than that of the narrow focus of scientific findings. And if you can convince a jury, you can convince the public." (italics mine)
So, there you have it: Uber-Parrot Schafer publicly admits that the mercury-causes-autism hypothesis is dead and their only hope is try to win through propaganda and subterfuge what they couldn't prove by data.

Unfortunately, the cause of autism won't be determined by some sort of popularity contest or even an election. Unlike the worlds of business, public relations and venture capital, there are objective truths in science (Paul Feyerabend notwithstanding). If Schafer and Co. manage to "convince" the public that they are right, that mercury causes autism, will that change the facts of the matter? No.

In fact, this attempted end-run by Schafer, Blaxill, Handley and the rest of that sorry crew is likely to have a catastrophic effect on autism research, postponing any real discoveries by decades. After all, once the courts (or the legislatures) have ruled that autism is caused by mercury, then it's a simple matter: pay damages to the families, remove mercury from vaccines and other medications and then file it away under "closed cases".

But, of course, real autism isn't that simple. Only the mercury-causes-autism proponents are that simple.

So, what happens when ten or twenty years go by and there are still autistic children in the 3 - 5 year age range? And this is a certainty, mind you, not just a "what if". Well, it is possible that the mercury-causes-autism people will manage to convince the courts or public opinion or the legislatures that the sky is still falling and that the trace amounts of mercury in the air, food and water are the cause. And, given the abysmally short attention span of the public, this might just work.

However, we would still be no closer to finding out what actually causes autism than we are at this moment - in fact, we would be worse off. After all, having "definitively proven" (in the courts, legislatures and public opinion polls) that mercury causes autism, nobody (except those few real scientists involved in autism research) would care to look any further.

And once we've reduced mercury exposure to the background level (after all, mercury has been in the environment for 4.6 billion years or more), what then? Do we move everybody into orbit - or the moon? And what do we do when autism continues to occur even on our Mars colonies?

Clearly, long before any of this comes to pass, even "the public" will awaken to the fact that they've been bamboozled by the mercury-causes-autism crowd. And then the whole parrot-driven mercury-causes-autism hypothesis will be given a proper burial.

Or we can bury it now. It already smells dead.


Friday, April 14, 2006

ENRON-Style Accounting by the Autism-Mercury Cult

Once again, the mercury-causes-autism die-hards have demonstrated their ignorance, no their utter disregard of the facts. An ironically-named organization - "Put Children First" (which was "founded by Generation Rescue") put a fact-free full-page ad in USA Today on 6 April, 2006. In this, they made some astounding claims - not the least of which was that there has been a "6,000% increase in autism". Of course, they blame the CDC for this increase.

It's a pity that government agencies can't sue for libel, because this sure meets the criteria - the authors know, or should have known, that what they were writing was false and defamatory. Mind you, this hasn't stopped them before.

"Put Children First", in the context of SafeMinds and Generation Rescue, brings to mind images of innocent children being used as human shields.

Comparing Apples and Orangutans

The "6,000% increase" is nicely demolished by Mike Stanton in his blog, Action for Autism, to which I commend the reader.

What's in a Number?

I would like to take aim at another persistent "mistake" the autism ghouls are pushing - the "1.5 million children with autism" in the US.

According to the US Census Bureau - which I'm sure Generation Rescue sees as just another cog in the giant Conspiracy-to-Hide-the-True-Cause-of-Autism - there were 73,949,950 "children" (defined as persons 17 years of age and younger) as of March, 2006. Even if we take the current worst-case estimate of autism as 1 in 166, that would only yield 445,482 (rounding up) "children" with autism. To get to 1.5 million "children with autism" would require that one child in 50 have autism. Not even the mercury ghouls have tried to push that figure.

So how would they get 1.5 million autistic people in the US?

Again, data from the US Census Bureau reveals that the US population (as of March 2006) was 292,947,437 (I don't know how they get such precision - ask them). An autistic population of 1.5 million would require a prevalence of "only" one in 195 persons - well within the numbers estimated for true autism prevalence.

However, that would also require that the mercury ghouls give up their premise that autism has dramatically risen in recent years. In fact, to keep to their claim that autism "exploded" since the1990's, the bulk of their claimed 1.5 million autistic children would have to be in the age range of 0 to 15 years, which is clearly impossible, as demonstrated above.

Building a Cult on Shifting Paradigms

Thomas Kuhn, a physicist turned philosopher, wrote a great deal on the philosophy of the scientific method. He, you may recall, was the one who coined the ever-popular phrase "paradigm shift". In his writings - which take a rather simplistic view of scientific progress, to be sure - he describes three phases of a scientific "paradigm":

[1] Pre-science, when the theories of the emerging paradigm are in flux and hotly debated.

[2] Normal science, when the theories are taken as a matter-of-fact and most work is on fine-tuning the way the paradigm represents the real world. This is also the time when the "anomalies" of the paradigm - the ways in which it fails to conform to reality - are discovered and accumulate.

[3] Crisis/revolution - where the limitations of the old paradigm result in a relatively small number of scientists in the field adopting a new paradigm, which rapidly becomes the dominant paradigm (after a period of "pre-science" for the new paradigm, while it is being formulated).

According to Kuhn - and the history of science - a steadily decreasing number of scientists will cling to the old paradigm, often using irrational reasoning to support it and/or to refute the new paradigm.

I bring this up because it occurs to me that the mercury-causes-autism groups are entering the crisis/revolution phase of their paradigm. In fact, the mercury-causes-autism paradigm has been a marvelous model for Kuhn's hypotheses - even though there was never much support for the paradigm in the scientific community.

Despite the fact that the mercury-causes-autism hypothesis never made it to "normal science" in the larger scientific community, it still is a useful model of Kuhn's postulates - in much the way that "Sim City" is a model for urban planning. Think of it as an experiment to see if pseudoscience (as modeled by the mercury-causes-autism hypothesis) will follow the same pattern as real science.

In the late 1990's, there was a "pre-scientific" (pre-pseudoscientific?) period in the mercury-causes-autism paradigm, following which a group of largely non-scientists (the few scientists showing little scientific method) published the "normative" article associating the symptoms of mercury poisoning with the almost completely dissimilar symptoms of autism. Of course, since none of the authors had ever seen mercury poisoning, their minds were unencumbered by the data that typically clutters most real scientific thinking.

For a period of time - at least within the pseudoscientific and "alternative medicine" communities - the mercury-causes-autism paradigm was "normal pseudoscience" and "researchers" (pseudoresearchers?) sought - rather than trying to test the hypothesis - to find ways to reconcile it with reality (to the extent they were able to perceive reality beyond their preconceptions).

Now, with a growing body of data refuting the hypothesis (which the pseudoscientists steadfastly try to ignore or marginalize) and with a growing number of self-evident contradictions in the hypothesis (see above) which require more and more elaborate "fixes" to resolve, the paradigm is in crisis. All that remains to be seen is if the pseudoscientific community will act anything like the scientific community would. This is the truly fascinating part of the "experiment".

At this time, it is unclear which path the mercury-causes-autism paradigm will take. It could take the scientific path and be rejected infavor of a new pseudoscientific paradigm or it could even - although this is very unlikely - be replaced by a scientific paradigm. Or it could go down the cult path (e.g. Cold Fusion) and morph into a full-blown faith, where ignorance is enshrined and any data aginst the canon is seen as "the work of the Devil".

Clearly, a number of the Generation Rescue types will head down the "cult" path. Many of them are already at the end of that path, waiting for the rest of their group. The few real scientists who have been sucked into this maelstrom will either have to swallow their pride (for some, it will be too much to swallow) or ride out this paradigm in an eerie imitation of Slim Pickens' final scene in "Dr Strangelove".

We now enter the final phase of the "experiment".

It's a pity Thomas Kuhn isn't alive to see it happen. Or perhaps it's a pity that we are.


Thursday, April 06, 2006

"Epidemic Denial" vs Autism Acceptance

With the publication in this month's Pediatrics of yet another repudiation of the "autism epidemic", the thimerosal-causes-autism and autism-epidemic groups have gone into yet another collective temper tantrum. And, as usual, their attacks are directed at the author rather than the data. Predictable.

The author, Paul Shattuck (not to be confused with Paul Shattock), seems genuinely suprised by the firestorm around him, especially since he had spent a lot of time and effort working with the Autism Society of America. It must hurt to have those same people turn on him so readily, but I can't say I'm surprised - I've seen it happen too often.

I won't spend the time to dismantle the feeble arguments raised against Dr. Shattuck's work (for that, see Orac and Kevin Leitch). What I would like to do is examine why these groups are so bitterly angry at Dr. Shattuck and others of his ilk who dare to expose the truth behind their lies (excuse me - "misrepresentations").

Denial - so the psychologists say - is not just a river in Egypt, it is a pervasive feature of human existence. A certain amount of denial is normal - I am in a certain amount of denial about getting well into my forties, although it hasn't reached the point where I have altered the birthdate on my driver's license. Denial helps us to minimize the unpleasantness of daily life by covering over the rough parts.

In some ways, you can look at denial as a mental version of spackle (a plaster-like paste used to fill in cracks and holes in walls) - it covers the imperfections of life without actually fixing them. As with spackle, the cracks and holes remain and can spread or reappear, but aren't visible anymore. A relatively small amount of spackle is essentially for good-looking walls, and a relatively small amount of denial is probably also neccesary for a smooth-running life. However, when either spackle or denial are used to excess instead of taking corrective action (e.g. instead of repairing a large crack or dealing with a major life problem), then problems occur.

For major traumatic events - such as finding out that your child has an incurable disability - a short period of denial allows a person to function until they have a chance to assimilate the new information at their own pace. However, this cannot be a permanent solution - or can it?

One way to make denial a permanent solution is to form a support group. Now, well-run support groups are supposed to help people to accept reality, but a growing number of (largely un-managed) support groups - often called "advocacy groups" - seem to exist solely to provide a social network where denial of reality is the accepted norm. Let's examine a few of these in the context of autism:

The "Autism-is-Curable" Groups:

Reality: As far as is currently known, autism is a permanent condition with an extremely variable prognosis. The eventual functional ability of a child with autism cannot be reliably predicted from their initial presentation, although the more severely affected children usually are more severely affected as adults.

Group Fantasy: Autism is curable, but only if the parents commit themselves body and soul to the cure. This includes following advice given by group "leaders", no matter how outlandish and never questioning someone who has "cured" (or "greatly improved") their child. Improvement is seen as the only "proof" needed that "cures" exist.

The fantasy ignores the fact that autistic children always make progress - autism is a syndrome of developmental delay, not developmental stasis. As a result, all children in the group will improve to some extent and some children will improve markedly - regardless of the interventions used. By enshrining these "placebo responders" (in reality, children who were going to improve regardless of the "treatment" used or not used), the group perpetuates the myth and stimulates the other parents to try all the harder in order that their children might be "cured", too.

The "Autism-is-Not-My-Fault" Groups:

Reality: Autism isn't caused by parents - except to the extent that the parents' genetics are involved. Likewise, the overwhelming majority of the data indicates that autism isn't anybody else's fault, either.

Group Fantasy: Autism is caused by the actions or inactions of other people, primarily governmental agencies, doctors, and - of course - that favorite Evil Empire, "Bog Pharma". Parents are only at fault if they fail to do absolutely everything they can do to "cure their children (see above). "Absolutely everything they can do" being determined, of course, by the group leaders.

These groups are the most puzzling, since one of their members, Dr. Bernard Rimland, was instrumental in showing that autism is not the result of "bad parenting". At least these groups aren't saying that autism is caused by a lack of parental warmth and affection. No, this time autism is caused by evil, corrupt and biased governmental agencies that refuse to admit that vaccines (either the MMR or the thimerosal preservative - take your pick) cause autism. The parents are only at fault if they don't try any and all of the proposed "therapies" to rid their children of mercury, poor sulfation, high testosterone, low anti-oxidant levels, hyper- or hypo-active immune systems (or both?) or whatever is current this week.

Many of the people active in these groups are more than willing to assert that parents who fail to enthusiastically embrace their therapeutic insanity are guilty of nothing less than child abuse, not to mention being criminally stupid. And that's just what they're saying in public forums.

So, it's not the parents' fault that their children are autistic - which is a tremendous improvement over Bettleheim and Kanner - but it is their fault if the children stay autistic. "Have you tried chelation? HBOT? Lupron? Injectible gold? If not, you're not trying hard enough!"

I guess that, in the eyes of the "Autism is curable!" and "It's not my fault!" groups, parents aren't "trying hard enough" unless and until their children are either "cured" or dead. And with the increasing lethality of the recommended "therapies" for autism, the latter seems to be getting more and more likely.

So why do parents buy these lines of baloney? Well, one possible reason is that it serves as a distraction. By focusing on how hard they are trying to get their children "well" and how mad they are at the heartless and corrupt government agencies that "poisoned" their children, they can forget - at least for a while - about how these children have not met the parents' expectations.

It may not be "nice" or "gentle", but the hard, cold reality is this: parents of autistic children did not get the child they expected (i.e. a child who was "normal"). This is not the parents' fault, nor is it the fault of the child or - truth be told - the fault of the government, doctors or even "Big Pharma". It just happened.

On the other hand, there is little to be gained - by the parents or their children - from not "dealing with" reality. No matter what fantasies the parents may be encouraged to believe, nothing will change the fact that they have the children that they have. This was a hard lesson to learn about my own child, but it is a lesson that I had to learn. To do otherwise would be to live in a fantasy world.

Acceptance is a simple thing - simple, but often very, very hard to do. Accepting the reality of the world doesn't mean that you have to like it, just that you acknowledge that it is reality. It is hoped that acceptance will lead to a more peaceful coexistence with reality, but that is not a requirement.

So, as long as the members of these so-called "advocacy groups" band together to ignore reality, they will be condemned to go through life being angry, frustrated and exhausted about something they didn't cause and have no power to change. But that's exactly what groups like DAN! and SafeMinds want, because angry, frustrated and exhausted people give them a political clout they would not otherwise have. Imagine how hard it would be for SafeMinds to get a member of Congress to introduce an idiotic bill if they didn't have a number of angry voters (in denial) behind them.

In the end, it's the parents (and their children) who lose in this game.