There are still people who believe in the most bizarre “cures” for autism.  We see stories about the continued use of chelation (which reportedly has the rather nasty side-effect of occasionally killing people) and bleach “MMS” (ditto).  Some of these complementary and alternative treatment approaches seem so utterly bizarre as to be completely devoid of any vestiges of logic, reason, or science: I once had a parent earnestly tell me that giant magnets under her autistic child’s bed were essential to the child’s well-being.[1]  Yet this mother was clearly an intelligent and articulate woman, and I have no reason to doubt that she cared about her autistic child.

Why do so many intelligent, well-meaning parents still believe such bizarre – and harmful – things?  Especially given that believing in these ideas often involves huge financial costs, as shameless entrepreneurs seek to profit from overwhelmed families by peddling their miracle solutions at absurd prices?

You might think that these strange beliefs would eventually go away after being repeatedly rejected on empirical and logical grounds, but it seems like the bizarre theories persist regardless.  The idea that vaccines cause autism has been comprehensively and repeatedly disproven over a period spanning decades, yet there are still believers.

What’s going on here?

Parental Desperation

Well, there’s always the obvious answer: desperation.  When parents with no previous exposure to the autism world are suddenly told that their child is autistic, these parents will often view autism itself as an enemy.  This is when we see changeling metaphors: the idea that the autistic child is really a neurotypical child who has been “stolen” and replaced by autism, rather like how folklore tells of fairies who stole human children and left “changeling” children behind.  The goal of these parents, then, becomes the destruction of autism and the restoration of the (imagined) typical child.

Autistic people have been rejecting these ideas for a long time, and at least for practical reasons, many researchers and professionals would also push back against the idea of autism itself as an enemy.  We would want to separate autism from different co-occurring conditions and symptoms, like intellectual disability, language delays, anxieties, and self-injurious behaviours, and we would want to choose our treatments to focus only on appropriate and achievable targets (e.g., fostering communication or reducing self-injurious behaviours).

But for a parent with no background in the autism world, who had been confidently expecting a neurotypical child, such solutions might seem grossly inadequate – like an admission of defeat.  These parents might instead try any weapon that might help to “defeat” the enemy of autism, no matter how bizarre or illogical these weapons might be.

However, this explanation isn’t everything.  For one thing, it doesn’t explain the long persistence of the anti-vaccine myth, which merely points to a cause of autism: belief in the dangers of vaccines does not offer parents a cure for their child.

Memes

What else could be happening?  When we’re trying to explain the widespread acceptance of an idea, one obvious tool is meme theory.  And I don’t mean those images with text on them, like “ONE DOES NOT SIMPLY [insert anything except ‘WALK INTO MORDOR’].”

No, I’m talking about memes in the philosophical sense: ideas that spread like genes.  Unlike people who assume that ideas spread because they’re true or compelling, meme theorists focus on ideas’ ability to perpetuate themselves.  All an idea needs to do to be successful is spread from one person to others.  Some ideas might spread because they’re true.  But people might spread other ideas for other reasons.

Ideas tend to do particularly well when they are memorable.  If people remember an idea, they’ll be more likely to spread it.

Ideas also tend to do particularly well when believing and spreading the idea is a moral duty.  If people feel morally obliged to believe and spread the idea, they’ll be more likely to believe and spread it.

A lot of “alternative facts” about autism & vaccines, or autism and “cures,” fall into these categories.  They tend to be memorable.  Furthermore, because the “cures” are believed to be morally good, and because the vaccines are believed to be harmful, believers have a moral duty to spread the ideas.  Believers also have a duty to keep believing the ideas, and often they will gather in communities that use social pressures to encourage one another to keep believing.

Distrust

And there are more reasons why “alternative facts” about autism are spreading so easily: other reasons why these ideas are propagating themselves so effectively.  Ours is a distrustful society.  People are less civically engaged than they once were and they’re more distrustful of government and authority.  People don’t trust “the Establishment.”  This is probably the main reason why populist political movements seem to be waxing in strength and power across much of Europe and North America.  It’s also related to complementary and alternative medicine.

Doctors, researchers, and others like them are a source of authority.  We’re part of “the Establishment.”  Even more distrusted than doctors and researchers are government organizations like the Centers for Disease Control and Prevention (CDC) in the United States.  The loud warnings about the dangers of alternative treatments and about the necessity of vaccines come from doctors, researchers, and the CDC, and there’s many people who will doubt those warnings for that reason alone.  You can see this distrust expressed in anti-vaxxer comments.

This is, of course, deeply ironic.  In truth, if parents should distrust anyone, they should be skeptical of the expensive alternative treatments peddled by exploitative profiteers.[2]

Adding to the Problem

Unfortunately, the behaviour of medical professionals doesn’t help people who might already distrust “the Establishment.”  Today, general-practice doctors have an annoying habit of ignoring parents’ concerns about a kid’s development.  Most doctors aren’t really well-trained in neurodevelopmental divergence, and many will struggle to apply their medical training (concerned with specific diseases) to the autism world (concerned with a socially-constructed category that includes an incredibly heterogeneous range of individuals).  Worse, many doctors, confident in their many years of education, will simply not be aware of their weaknesses.

It certainly took a long, long time for me to get diagnosed, and there were plenty of occasions when somebody could have figured things out earlier.  And others I know well had worse experiences – even encountering doctors with no autism experience who tried to overrule specialists and argue that a kid didn’t really have autism.

A while ago, I was watching this excellent video and I realized that the shortcomings of medical professionals (of which I was already well aware) were related to parents’ decisions to use alternative medicine.  I hadn’t realized the link before, but I should have.  When you think about it, it’s obvious.

Put yourself in a parent’s shoes: you knew that your kid wasn’t developing normally and that the kid needed help.  The medical “experts” around you disagreed.  You persevered and eventually found that you were right all along: a diagnosis was (belatedly) given.  Now what?  When those same experts tell you that the simple solution – the one that promises an instant fix – isn’t going to work, why should you believe them?

Obviously, we should keep trying to spread information about the dangers of pseudoscientific practices and fake miracle cures.  But before we condemn parents who are trying to do best for their children and who simply victim to predatory providers in the process, let’s look to our own behaviour and consider how we exacerbate parents’ distrust of “the Establishment.”

 

Any comments?  Are there reasons I’ve left out?  Have you ever tried alternative medicine – and if so, what encouraged you to make that choice?

Footnotes

[1] She claimed that autistic people never adapted to the last polarity shift in the Earth’s magnetic field.  There are so many flaws with that idea that I don’t even know where to start.

[2] I have no doubt that many of these profiteers genuinely believe they’re doing the right thing, but humans have an extraordinarily good ability to trick ourselves into genuinely believing that we’re doing the right thing.  It’s easier to lie if you believe the lie, so we evolved to believe our own lies.