An Oldie…The Perfect Storm

One of the autism causation theories currently circulating is the theory that mercury causes autism. This theory follows a long line of theories that hold the “promise” of allowing parents to cure their autistic offspring. We’ve been through this before – we’ve seen the refrigerator mother theory. We’ve seen the demonic possession theory. We’ve seen changeling and elves. We’ve seen holding therapy. We’ve seen secretin. We’ve seen mega-doses of vitamins. We’ve seen gold salts. We’ve seen the MMR and the leaky gut theory. All these share, with mercury, a complete absence of valid scientific evidence. I doubt we’ve seen the last of the unscientific theories, either.

This is an old article, written around 2005.  I’ve reposted it because, sadly it’s still relevant in some circles.  But since 2005, there’s been court cases on this, notably in the vaccine court, which according to one of the judges, “This case . . . is not a close case. The overall weight of the evidence is overwhelmingly contrary to the petitioners’ causation theories.”  Yet many people are still avoiding vaccinating their children, largely because of the bogus theory that there is a link between mercury and autism.

Why, then, should the mercury causation theory be examined here? After all, it’s been debunked by leading scientists (see the end of the article for a list of URLs about the pseudoscience of mercury causation), and I can’t say anymore than has already been said about the science. And, while chelation (one of the supposed “treatments” according to supporters of the mercury theory) has killed at least one child, the mercury theory is relatively benign (only a very small fraction of parents use chelation, and few children or families experience serious loss, outside of their pocketbooks; yet some commonly prescribed drugs for autistic children are known to cause brain damage, which I suspect is a much larger problem for autistics as a whole). So why discuss it? I felt it was useful to discuss because it gives an insight into how such theories gain traction in popular culture.

The Beginnings

Much of this can be traced back to an article published online a few years ago with an easy-to-read, albeit factually incorrect, chart that compared symptoms of mercury poisoning to the symptoms of autism. A quick glance down the list by someone familiar with autism but unfamiliar with mercury poisoning would show a list of nearly identical symptoms between the “mercury poisoning” column and the “autism” column. What isn’t said is that there are some very clear distinctions between mercury poisoning and autism, and that this list left out key symptoms of mercury poisoning. But, in the absence of conflicting evidence easily available to casual web-surfers at the time, this theory gained traction. And, as a coworker of mine likes to say, “First lie wins!” The “first lie wins” phrase is a simple way of describing the bias humans (yes, even autistics it seems) have towards distrusting new information which contradicts information they’ve already “learned.” So, this early publication of a scientific-looking paper to an audience largely without expertise in medicine “pre-programmed” many minds with the idea that mercury and autism were connected.

The Big-Pharma Connection

Since the late 90s, there has been a growing mistrust towards the pharmaceutical industry. We’ve seen costs rise at astronomical rates, unethical marketing of drugs, introduction of Viagra while people die of treatable illnesses in the third world, several pain killers being found to be less safe than the public was led to believe, flu vaccine shortages, and even cover-ups as to the real danger of many drugs. When it became widely known (this was never covered up) that many vaccines given to children contain Thimerosal, a chemical that includes mercury atoms, this mistrust of the pharmaceutical companies caused many to assume that this was part of a cover-up, where the drug companies were knowingly destroying children’s minds for the sake of profit (note however that the Thimerosal has a purpose – to save lives by preventing infection – in the vaccines it was used in). After all, how different would that be then marketing an anti-depressant you knew increased the risk of suicide, or a pain pill that increased the risk of death (both of which happened)? It was easy to believe, even in the complete absence of any evidence that Thimerosal, as used in vaccines, was dangerous or that there was evidence that was “suppressed” by the drug companies. (sadly this mistrust of drug companies doesn’t translate to mistrust of anti-psychotic/neuroleptic drugs prescribed off-label to treat children, despite known effects – even in the atypical ones – of permanent brain damage)

Government Conspiracy

Not too long after the Thimerosal connection was “exposed” by the mercury causation groups, several other events took place. First, governments, especially the US government, started seeing a drop in vaccination rates because parents feared causing brain damage – and autism – in their children. To prevent a public health disaster, the government came out strongly that Thimerosal does not cause autism, and that scientific evidence showed that it did not. However, like all strong denials by governments in the face of suspected cover-ups, this only served to strengthen the voices of those who believed vaccines were the cause of autism. After all, the government has lied about other things, why not this? The government makes money off of drug companies, and drug companies (like any other large for-profit – or non-profit – organization) support politicians running for office. Wouldn’t you expect them to lie to help save their supporters?

Add to that some pending lawsuits and distrust over the US government’s vaccine injury program (which limits the amount of money someone can collect that is unrelated to actual damages), and people can see why the government would want to cover this up – it could cost their supporters lots of money! It was even suggested that leading college professors and researchers around the world were “bought” by the US government and only published studies that supported the official US government position, since the federal government funds much research in medicine.

It should be noted that rarely do the supporters of the mercury causation theory consider that this conspiracy would need to apply to nearly every government in the world, not just the US government, nor just governments that have good relations with the US government.

The Media

At this point, there was one heck of a story! Researchers who published on the internet found the link to autism (wow! what a story), but it wasn’t published in peer reviewed scientific journals because the journals were “owned” by big-pharma and the US government (despite these same journals publishing studies showing highly profitable drugs to be unsafe). Everyone loves a conspiracy – it makes much more interesting news than the routine bureaucratic nature of government. And the news, in today’s culture of “present both sides of the issue,” gave equal time – and thus equal weight – to both sides of this issue. Unfortunately the evidence was not equal, it strongly favors the theory that mercury has nothing to do with the causation of autism. This subtlety however was lost in the race to prime-time TV and front-cover of a magazine. “Do what public health officials have been telling you to do for years” doesn’t warrant a headline, whereas “Public health officials are lying to you and want to damage your child!” certainly will get a parent’s attention!

Enter the Quacks

There are many people who seek to profit off of the parents of autistic children (it’s a big industry – we can be worth millions to service providers, doctors, schools, etc, over our lifetime). Some do so ethically, but many do so with less concern for parents and children than for their own pocketbook. Many cures were sold (and are still being sold) for this mercury poisoning, such as creams that “leach” the mercury out of a child’s system (I wonder if anyone sells actual leaches for this) and chelation, which is the administration of chemicals designed to bind to heavy metals (however note that no effective chelating chemical for long-term mercury exposure exists – and many chemicals marketed to parents can’t even bind to mercury). Some of these are fairly innocuous treatments, which risk little more than a family’s financial security. Others, however, can cause serious complications, including heart problems, nervous system damage, the risk of increasing the concentrations of heavy metals inside the body, and even death.

Many of these quacks however have very charismatic personalities and take advantage of their patient’s mistrust of medicine. After all, no “normal” doctor has helped their child, so you need to look outside of “normal” medicine. (the bond between these “doctors” and the parents can be very strong – in the most recent case of death following chelation, the parents defended the doctor as being one of the only people who was willing to help their now dead son).

Coincidence and Superstition

Often, when an event occurs immediately following another event, it is assumed that they are related. In fact, this is often a very good assumption! However, temporal proximity does not imply causation. There are many stories floating around the internet about how a child was “normal” up to when they received some particular childhood vaccine, at which point the child regressed, became sick (sometimes), and “clearly” reacted to the vaccine. Often it is said amid tears, in very emotional terms. When you read 4 or 5 of these stories, or even 50 of them, it becomes very convincing – they all read the same: “Child received shot, child became autistic.” Clearly there is a connection, right?

Unfortunately it doesn’t work that way, and science studying the mercury-autism theory has shown that this connection does not exist. What is happening, then? People, including even parents of autistic children, possess some inherent bias – the type of bias well-conducted scientific studies explicitly attempt to control. People see what they expect to see. Scientists recognize this in their studies – often, while conducting research, you see what you expect to see, not necessarily what is really there. You often don’t see what you don’t expect (or want) to see. This has been extensively studied, and there are research methods which correct for the majority of this bias – but these corrections are absent from anecdotal reports, even reports of people who may be very logical and cautious.

In addition, it’s well known that even without “mercury” that autistics do sometimes lose skills as part of their development. But it’s only natural to want to find out what happened just prior to the loss to determine what caused the loss – even if the cause wasn’t external but was an internal part of development.

Have you ever discussed religion or politics with someone who had different political or religious views? If you have, you know that people can be incredibly stubborn when it comes to things they “know” – even when evidence might disagree with their views. Why would parents of autistics be any different?

Think for a minute about the superstition that walking under a ladder is “bad luck”. One could conduct a scientific study, which would likely prove that walking under a ladder has nothing to do with accidents occurring later in the day. But, if someone walks under a ladder, and later in the day they step in front of a moving car, one might assume these events are related – that walking under the ladder caused the accident later in the day. Superstition is formed and reinforced via anecdotes, and the proper response to superstition is to examine the evidence for true correlation via controlled methods – as has been done with the mercury versus autism debate.

Expectation of a Cure

This also goes the other way – parents will talk about their child miraculously improving immediately (or right when the “doctor” predicted), after starting certain treatments. Unfortunately, often these stories are simply anecdotes that have no scientific validity – with many of the cures, especially chelation and similar therapies, the “recovery rate” is identical to that of autistics who did not undergo the specific therapy.

In addition, when the “cured” children are examined by professionals, it is often discovered that they are not cured. Instead, parents are seeing every “good day” as evidence of improvement, while discounting the “bad days”. In addition, due to expectations, parents see what they want to see – the cure.

In a variety of religions, there are reports of spontaneous healings, typically from the hand of God. Often these religions are in opposition too each other, so it isn’t possible to believe in the validity of all the religious healings as being from God – you might believe your religion’s miraculous healings are from God (and they may be), but it’s not possible for your healings to be from God and every other religion’s healings to be from God. So how do these other healings occur? A combination of expectation and selective perception are involved – people expect good things through their religion, and they are more apt to look for the good things after receiving a “healing touch.”

Autistic cures are no different than that healing touch.

Good Parents

Typically, we believe people like us are “good” people – we can understand their motivations, and can see that their motivations are neither evil nor random. Sure, we recognize that we make mistakes, but there are often reasons for those mistakes and we usually aren’t intentionally trying to be evil.

I know that I personally, who am not a parent but simply an autistic adult, often give more attention to another autistic than to a neurotypical. After all, the neurotypicals thinks and reasons much differently than I do, while the autistic likely uses thought processes much more similar to my own. In addition, I share experiences and even culture with the other autistic – shared struggles and victories. Parents are no different – and not always for bad reasons. After all, who would you take parenting advice from if you were a parent – ideally, it would be someone who has shared experiences with you, especially parenting a child. You would want their child to be similar to your child.

So, when a parent talks about how they helped their child, what parent wouldn’t want to learn more? This is especially true if that person’s child is like your own. Combine that with a parent discussing their cure who is obviously very sincere, and can share your pains and sufferings, and you have a very convincing presentation. Too often people confuse sincerity with truth and confuse a mistaken belief with intentional deception.

The Autistics

Imagine being a parent of a 5 year old who doesn’t speak and whom you do not believe will ever be able to live “outside of an institution.” You go to a presentation and hear a parent talk about their five year old, who did not speak. Then you see an attractive 17 year old boy who seems very calm and controlled, and is able to tell you how grateful he is for his mother – and who is very sincere. Are you not the least bit likely to listen more to that parent after seeing the autistic? After all, you want to know what the mother did to bring her child out of the prison of autism!

What is often ignored is that autistics grow and mature, just as neurotypicals. Sometimes we reach neurotypicals milestones much later than neurotypicals do – for instance, we may start speaking at age 8, and rapidly progress in proficiency to the point where we are indistinguishable from our peers in our speech patterns by age 9! In fact the vast majority of non-verbal autistic preschoolers will speak by age 10, even without unusual therapies. But, the parent of the five year old, seeing that their child is clearly behind all the other children his age, is likely not to see that reality. So, when you show the reality, it’s assumed that something else has happened besides normal development.

A Desire to Help

What parent doesn’t want to help their child learn and grow? Any parent that does not have this trait is either abusive or neglectful! Sometimes, the normal parent stuff doesn’t feel like enough. After all, what parent doesn’t want their child to find someone to spend their life with, have a wonderful career, live in a nice house, etc? This desire to help however can become a desire to fulfill a personal need in one’s self, not to fulfill other people’s needs. When that happens, it’s hard to stop.

Add to this that many people in the autism community who are “true believers” in various cures (or who are selling the cures) insist that if you loved your child, if you wanted to help your child, you wouldn’t “do nothing,” but you would do whatever it is that they believe in. Anything else is “doing nothing,” as most true believers have a religious exclusivity towards their preferred cures.

Prejudice

This is the biggest player in the mercury-causation scene. It’s the idea that normality is better than “abnormality.” This is the goal that perfection can be defined easily, and it is the ultimate goal. Add to this a belief that autistics are “trapped,” “unable to live outside of an institution,” and, even, “worse than dead.” (some prominent pro-cure advocates insist that autism is worse than cancer, because cancer kills and autism does not)

Once you believe that someone’s life is worse than death, it’s logical to try anything, no matter how unlikely it is that it will improve that person’s life. After all, you can’t make things worse – even killing the person will make things better.

Now most parents and advocates of the mercury causation theory don’t want kids dead. But they desperately want to rid their kid of autism. When confronted, they often say things like, “Well I’m not talking about oddities, I’m talking about the fact that he’ll live in an institution and not be able to use the potty by himself” or whatever else. In some cases, such as mentioning institutions, they mention the prejudice of society (the idea that people with significant disabilities can only receive the services they need inside an institution – an incorrect statement at best), confusing them with things that are intrinsic to autism. Thus, rather than changing society, they blame the victim for the problems of society. In other cases, such as toilet training difficulties, their prejudice is exposed by assuming that being able to use a toilet (or whatever else) is somehow equivalent with a happy life – which any toilet-using adult knows simply isn’t true!

Rather than helping an autistic grow and live up to his full potential – as an autistic person even, too often it becomes trying to get an autistic to rid himself of his autism, even if that means he won’t ever reach his potential.

We don’t need a cure. We need the support to reach our potential.

Links

Disclaimer

I don’t think parents are bad, and I don’t think even parents who pursue cures for autism are evil.

I do think that it is possible to, out of a desire to help, make mistakes and even cause harm. Please don’t think that I’m blaming parents. I do ask parents to consider my words however.

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One Response to An Oldie…The Perfect Storm

  1. Jane Strauss says:

    I’m a parent. I’m Autistic. I have kids on the spectrum and a partner on the spectrum. I’m a former biomedical research worker. I agree. I am very tired of the snake oil being peddled in the name of cure.