In Fear of Vaccines?

Since there’s been much debate and misunderstanding about an alleged link between vaccines and autism, I asked Linda from the fabulously rational Autism and Oughtisms blog to write this Guest Post for any parents worried about making a vaccination decision in the face of so many anti-vaccine stories.

Fear of the unknown drives people to do crazy things. They’ll cling desperately to proposed answers -- however poorly supported those answers are -- merely because they are answers; any explanation is considered better than no explanation at all. Add in the desperation of a parent trying to help their suffering child, and a sense that someone must surely be to blame for the child’s suffering, and you have a recipe for things to go very badly.

Trying to understand why so many parents (mostly mothers) of autistic children won’t let go of the “vaccines cause autism” hypothesis requires some appreciation of what these mothers have gone through. That understanding can’t and won’t excuse them pushing an anti-vaccine agenda in the face of endless scientific proof to the contrary, but I think it helps to get a grip on why these parents just won’t move on from the idea.

Imagine your child’s development has stopped or even gone backwards, the child is displaying very concerning deficits in their social skills, they may be frequently violent to others and themselves, and appear unable to talk. You did all the right things during pregnancy, your child looks “normal,” you’re a dedicated mum who loves her kid to bits like any other mum, so what’s gone wrong here? After friends and family finally get past trying to blame your parenting, someone might get around to suggesting you see a professional in child developmental disorders. That professional might drop the “A” word: Autism. They’ll also tell you they can’t say what caused the condition, they can’t give you a certain prognosis for the child’s future, and there is no cure.

That’s a lot of unknowns to get your head around, as you begin what will be a life-time of various therapies to help your child, with no promises at all of success.

The sense that someone has to be to blame, that you must have done something wrong as a mum, these are typical and frightening ideas that mothers go through at this time too.

And then – perhaps just when you’re at your lowest point -- someone on the internet, or a passing article, or a late-night documentary, offers you an answer to what caused it, who’s to blame, and what you can do to fix it: The answer, they say, is vaccines. Vaccines did it.

At such a time, this is an answer you can readily accept. It was nothing you did. So obviously doctors –- either duped by Big Pharma or in on it themselves -- injected toxins into your kid. To fix it you must flush the toxins out, with either dangerous measures like chelation or redundant wastes of time like homeopathy.

So now you have someone to hate, and a community of people with whom to hate them (and since the experience of bringing up a child with severe social and communication deficits is predictably isolating, finding a community of other autism mums -- a group of people who finally understand what you’re going through -- can be quite intoxicating ). Together you get to feel like you’re making a difference in a time of otherwise feeling quite helpless, you can go on protest marches and write blog-posts revealing the conspiracy, and align yourself with pretty autism mums like Jenny McCarthy.

And then when it all turns out to be a lie? What then?

What do you do when study after study over decades shows no link at all between autism and vaccines?

When the original study suggesting a link is revealed to have been fraudulent, and the doctor who pushed the idea of a link is revealed to be a deeply unethical man who has planned to financially prosper from the fear of vaccines?

What do you do at that point? Does everyone just shrug and walk away from years of rote-learning vaccine ingredients, do you admit that you subjected your child to un-necessary and invasive procedures to remove toxins that were never there or never relevant to autism?  Do you publicly resile from your claims and announce the true facts to the world?

Not usually, no.

You see, I understand these mothers. I do. I’ve talked to them extensively ever since my own son was diagnosed with autism five years ago. The autism mums who are passionately anti-vaccines are deeply confused and misinformed.

They’re misinformed about how vaccines work, what is in them, what those ingredients do to the body, how the ingredients are excreted or metabolised by the body.

This should come as no surprise really: they’re your average mum, not your average scientist. They know a little about how pharmaceutical companies operate (which isn’t great by the way – read Bad Pharma by Ben Goldacre to see some of the issues, but then you have to read Bad Science by Ben Goldacre too to get a wider grasp of how science works in general, and why vaccines don’t cause autism). But they seem to stop their reading when they stumble across articles and books and studies that challenge their views, or that suggest an open mind to suggestions “hey maybe it’s not vaccines”; when you encounter this closed view, you can quickly lose sympathy for those who doggedly push the anti-vaccine agenda based on fear of autism.

Not least of all because choosing to not vaccinate is not some victimless decision. It is a decision that impacts on the health and safety of the wider population, most especially those vulnerable because their immune systems are too compromised (e.g., those with cancer) or who are too young to be vaccinated themselves.

Of course it also affects the health of the child who is not vaccinated, their family, and their classmates. Choosing not to vaccinate a child based on fear of autism or based on misinformation about what the vaccines are made of and how they work – choosing to ignore all reputable medical establishments and the top scientists in the fields – is not a choice that I find worthy of respect.

I’m not saying there are those who can’t or shouldn’t be vaccinated, I have already said there are exactly those groups within society as a key reason why others should choose to vaccinate their kids. What I am saying is that when science and scientists and truth hits you repeatedly over the head with knowledge that you choose to ignore, because you prefer your cosy conspiracy theory giving you the (wrong) answers you so desperately seek, then you are acting poorly and should be called out on it.

That is what the World Health Organisation has recently come out saying it would like us to do more: to fight back against the anti-vaccine trend which is endangering millions of lives and is leading to the resurgence of dangerous diseases we had once almost eradicated in various countries. 

And so I write this post as part of my own fight back. I proudly say this: I am a mother of an autistic child (or two, looks like our second born is on the spectrum too), and I do not believe vaccines cause autism, because THEY DON’T.

There are plenty of autism mums just like me, who sit by politely while more vocal autism mums go on protests and scream their conspiracy theories to the media and the politicians, and sign their online petitions. It’s time us other autism mums spoke up louder, and let everyone know we are not all like Jenny McCarthy (some of us actually look good without plastic surgery and botox). We tend to sit by to avoid upsetting already emotionally fragile people, but there comes a time that the dangers posed by the misinformation outweigh the desire to not rock the boat.

Where does this leave us mums then, when we want to know what caused autism, what will happen to our children, and what we can do about it? There are already alternative answers out there in the  world, but they aren’t tied up with a tidy little bow under one mass world-order conspiracy theory -- the reality is far more complex, but also far more interesting.

For our own family, despite genetic testing we still don’t know what caused our son’s autism, but we did all the therapies and interventions that our specialists told us to do to help our son’s development and he is doing very well now: once at the severe end of the spectrum he is now at the mild end and has a bright future.

At the broader end of understanding autism – of getting a grip on where science is leading us in understanding what it is and where it comes from -- I want to leave you with this presentation below by geneticist Wendy Chung, and with this sentiment: It’s better to admit we don’t have all the answers yet, than to hang on to the wrong answers.

[Pic from NZ Herald]