Autism is only one small part of the anti-vaccination story. It’s time we looked past it.

Photo credit via Flickr cc license.

This is not a post about the relative merits of vaccinating versus not vaccinating your children. That question is not up for debate.

Throughout history, populations have been decimated by new viruses introduced by explorers and settlers from abroad. Entire tribes of Native people were wiped out after European contact with the Americas. And even where exposure to a disease had already been established, epidemic viral outbreaks continued to wreak havoc on large numbers of people throughout the world.

Wouldn’t it be wonderful if we could somehow protect ourselves? Somehow build up immunity against those viruses without actually contracting them? If only there were some sort of shot that could magically protect us from the ravages of disease.

It turns out that we didn’t need magic because we have science. Vaccines have worked to prevent the spread of disease wherever they have been widely adopted. They have worked so well, in fact, that many of the diseases we are immunized against haven’t been seen for generations.

As medical science continued to develop more and better vaccines, parents happily vaccinated their children against more and more illnesses. Until now.

* * *

Suddenly, within the past 10 or 15 years, vaccination rates steadily began to drop.

Don’t get me wrong; there have always been outliers. There are religious communities like the Amish and Christian Science that largely don’t believe in vaccines or modern medicine. There are other fringe communities and individuals who are distrustful of the establishment in general and opt out of standard medical treatment like vaccines for various reasons.

But that’s not what we’re talking about. We’re talking about a significant number of mainstream parents, many of whom are well-educated, who decided to either forego or significantly delay vaccinating their children. (These parents may be into “alternative” health practices and lifestyles, but they live in urban centres, hold down jobs and send their kids to public schools. They are alternative like Nirvana was alternative.)

I want to know why.

The prevailing theory is that a widely publicized (and since discredited) study that was published by the prestigious medical journal, The Lancet, linked the MMR vaccine (measles, mumps and rubella) to autism and caused widespread fear and distrust of that vaccine and vaccines in general. This is also the Jenny McCarthy theory of vaccine denial since she was an early advocate of the so-called link between vaccines and autism.

But I’m not so sure. Certainly, the suggestion that vaccines could trigger autism in some people gave many parents pause. And I can absolutely understand how a parent who has a child who suddenly begins to show symptoms of autism after receiving a vaccination could want to believe that theory. Still, I’ve known enough people who haven’t vaccinated their children to wonder if that wasn’t an oversimplification.

The autism theory, in other words, is one part of the story, but I think there’s more to it than that.

I think the rising popularity of natural childbirth throughout the ’90s and 2000s fostered distrust of the medical establishment and, at the same time, sowed the idea that we should be the ones making medical choices for ourselves and our children — and all those choices should be equally respected. The internet further facilitated the democratization of medicine as every lay man and woman decided they could interpret the science for themselves, thankyouverymuch. And, finally, I think the medical establishment itself was extremely slow to respond to these sea changes in a meaningful way.

* * *

First, I wanted to talk to actual parents to see if my theories hold water. I interviewed four parents for this post: two who are steadfastly opposed to vaccinating their children and two who abstained from vaccinating for several years and then changed their minds. I also asked a few stray questions of several other parents. This would not be nearly enough for a sociology thesis, or even a Toronto Life feature story, but I think it’ll do for this epic blog post.

None of the people I talked to want to be identified. Names and identifying characteristics have been changed. If you think you know who I’m talking about, you’re wrong. Let’s put down the pitchforks for just a second and listen.

May is freelance graphic designer who lives in Vancouver with her husband and school-aged daughter. She also has a 20-year-old daughter from a previous relationship. Her younger daughter has been vaccinated according to the standard timeline while her eldest was not.

“To be honest, I’d never heard of the idea of not vaccinating before I was pregnant with my daughter in 1995,” May said. Then again, who had at that time? But it made sense that the sort of perma-hippie Vancouver Island community she lived in when she gave birth would be ahead of the alt-medicine curve.

May had moved to Vancouver Island from Calgary and had already become a vegetarian and was into feminist health issues. She was already worrying about toxins from plastics leaking into our food well before anyone had heard of BPA. She had a midwife and was planning a natural childbirth.

“I had a natural proclivity to alternative takes on things, which has ultimately served me well because I can use critical thinking when it comes to current events.” May said, “I had a natural skepticism, but not an affinity for conspiracy theories.”

“The first couple we met when we moved to the Island was this younger Boomer couple and they were really nice and they were toxicologists,” May told me. “I was concerned that I had smoked pot early in my pregnancy. So I talked to them about it and they looked up all these toxicology reports for me. And they were the ones who brought up the idea of not vaccinating. They said there’d been new studies and that it was up in the air. We either overstimulate babies’ immune systems or we vaccinate them too early.”

Around the same time, May began reading Mothering magazine, a prominent “natural mothering” publication that was in print from 1976 to 2010 and that continues as a website. There was a book you could order from Mothering that May recognized in a second-hand bookstore. “I can’t remember the name of it, but it had a blue cover and was essentially a pamphlet. It was a series of articles about the dangers of vaccinating.”

That tipped the scales for May and she decided to at least wait. “We would delay vaxes and not do all of them.”

Ultimately, May’s first born wound up getting some vaccinations here and there in order to travel and to appease her husband who wasn’t as keen about the idea of skipping shots. But she didn’t get all of her needles and she certainly didn’t get them on time.

“I’ve been thinking about this for the past couple years. I don’t even know which vaccines she wound up getting. She’s a grown woman now. She could get pregnant and not be vaccinated against rubella. What!?”

By the time May’s daughter started school, there were already enough people in that community who were asking for an exemption to the mandatory vaccination rule that they had a form ready to go.

But eventually May changed her mind. The autism link was debunked (though the Lancet study was not published until 1998, three years after May had already decided to skip certain vaccines). The reason you could opt out, May says is because “most people vaccinate, so your risk is low. So it was always from the perspective of your family, your children. And that disturbed me. I was raised to believe you are responsible to your community and not just yourself. It always felt strange to me to rely on herd immunity.”

When May left her insular Island community, she also became more globally aware. “People are clamouring for these vaccines. People are dying. And I have the freedom to choose not to have them. Why would I not have them?”

“You know,” she added, “when I got rid of that pamphlet from Mothering, I didn’t give it away. I shredded it.”

* * *

Amy is a small business owner who lives in Montreal with her husband and three kids. None of their children have been vaccinated and they do attend a local public school.

“The choice to not vaccinate is part of a greater mistrust in modern hospital systems, big pharma and money in the the healthcare system,” Amy said. “Also a strong belief in preventative medicines or as some call it Eastern Medicine.” Amy also had natural childbirths under the care of a midwife for all her children.

She stresses that vaccines come from billion-dollar corporations and also notes her family doesn’t really use “natural” medicines either. “I know this might sound whack but I really do believe in the power of the mind and in meditation and self healing,” Amy said. “We are what we think. Our family never thinks about anything besides being healthy and strong and happy and so it is. We also practice yoga, eat well, live an active and healthy lifestyle generally.”

But Amy is quick to point out that she’s not anti-Western medicine. Rather, she feels strongly that every family should do what is right for them. “And, yes, it’s a luxury to be able to make those types of choices in a democratic and mostly immunized population. I can admit that if we lived in a country that was riddled with these diseases we would not be questioning the immunization process,” Amy said. “I just think it’s gone too far.”

Amy says nothing in particular prompted them to forego vaccinations. A fear of autism certainly didn’t play into it. They simply don’t trust what’s in them and prefer to rely on a belief in building immunity naturally. There is also a distaste for big pharma.

I asked Amy if she would ever vaccinate her kids in the future. “Yes, if we traveled to third world countries. We are in talks about doing it now that they’re a little older and their systems are strong. However, they have never been sick so this would likely make them sick for a while as their systems are pretty clean. We are happy with the choice we made but are also not completely closed to the idea of vaccines. It’s more a delayed response, I suppose.”

Amy is staunchly unafraid of the measles for now. “There is so much fear in the media, fear in parenting, fear fear fear. We try not to listen to the noise. No, I’m not scared. I don’t think about it. I don’t believe in being scared; I believe in focusing on health, not on sickness.”

But, ultimately, she’s not entirely opposed to changing her mind. “If I started to feel like kids were dropping like flies from measles I might reconsider it, yes. Again, we are talking it over now and discussing the possibilities, and we’re not completely closed off to the idea of vaccines. What we are is critical thinkers without a herd mentality.”

* * *

Jason is a working musicians who lives in Hamilton with his wife and two young children. Neither child is vaccinated.

Again, Jason points to his wife’s pregnancy and the birth of their first child as a departure point for them. Rather than vaccinating their kids, Jason said, “Our belief is that a healthy immune system is the best protection against infectious disease as well as formidable remedy.”

“We both felt more attuned to the idea of home birth and midwifery; less medicalization and more focus on emotional and spiritual wellness. Our decisions, both then and now have always been based on logic, intuition and science (or lack thereof).”

Jason, like other vaccine skeptics I’ve talked to, has clearly done plenty of research and is quickly able to rhyme off sophisticated-sounding reasons for opting out of immunizations. Among those listed are a lack of “comprehensive third party studies” of individual vaccines and their schedules, anecdotal evidence, doubt regarding the effectiveness of vaccines and an inherent distrust of pharmaceutical corporations and the government.

While Jason and his wife might consider vaccinating their children in the future, “If and when, vaccines are offered individually and/or at such a time when studies that take into account the entirety of the current vaccine schedule are made available,” they are not swayed by the current resurgence of measles. Jason claims that both vaccine safety and the risks of contracting the disease are unreliable. “There are no scientific weights on this scale – only anecdotal vs. unreliable.”

To his credit, Jason did not flinch when I asked what evidence he would have to see to change his position regarding vaccinations. He said he wants, “conclusive evidence that factors such as sanitation, nutrition and health care were not significant contributors to disease eradication when compared with vaccinations. And a comprehensive third party study of vaccine safety and efficacy.”

Jason stresses that opting out of vaccinations and interventions means going, “against the grain, which requires a great deal of patience, research, passion, an open mind and a broader view of health and wellness.”

Why does he forego vaccines? Jason would rather ask why others won’t think more critically. “Why do they continue taking their cues from institutions that are frequently shown to be unreliable, irresponsible and profit-driven? Why do they have such irrational contempt for informed people that have opposing views?” he asks. “And why can’t they be more willing to embrace them as fellow human beings?”

* * *

My final interview was with Laura, an academic living in Toronto with her husband and three sons. They opted out vaccinating their first born for a full four years before doing a complete about-face. Now, all three children are completely caught up on their shots.

As with everyone else (in my my extremely small sample), Laura places her decision to not vaccinate her first born within the context of midwifery and a natural birth plan. But in 2006 their planned homebirth ended up in a c-section and they were left feeling wounded.

“So our earliest days as parents were tinged with this mistrust of the mainstream medical scheme,” Laura said. “And we were pretty vulnerable to anti-medical rhetoric, right at the time when you’re vulnerable to everything.”

In fact, for Laura, it was the midwife herself who first suggested they didn’t have to vaccinate. “It was the first I’d ever heard of that!”

And, like May 10 years before her, Laura discovered the anti-vaccination rhetoric rampant in Mothering magazine. “It was pretty influential. It appealed to smarter, more educated, middle class women — and I’d say it did a lot of damage, actually.”

Despite knowing that vaccines actually do work, Laura clung to her new-found love of informed consent, the cornerstone of midwifery care. “I felt like I had to research vaccines very, very carefully before making a decision,” she said. “The main thrust of my concern was that “big pharma” had a stake in promoting vaccines and that I should examine that. Looking back, I’m embarrassed that I ever bothered with such a red herring, but I was in a frantically skeptical mode.”

After four years of abstaining and researching, the evidence in favour of vaccinating couldn’t be ignored any longer. Laura vaccinated her first-born son.

Looking back, Laura acknowledges that the main argument against vaccinating was that her baby would have a greater likelihood of experiencing some sort of (likely mild to moderate) reaction to a shot than to being exposed to most of the diseases we vaccinate against. “That’s right,” she said, “and that’s exactly the narcissistic myopia that I’m embarrassed to have participated in.”

But for parents weighing the pros and cons of vaccinations around that time, the idea of anyone being exposed to those diseases was hard to wrap your head around. “I did realize that this was a “first world” decision, but I wasn’t framing it that way,” Laura said. “It felt like polio and diphtheria were so remote — so much more than just one herd’s immunity away — that everything was just hypothetical anyway.”

Laura credits a nurse from Kenya who gushed about how grateful she was her son could be vaccinated for free in Canada for helping to open her eyes. Well, it was that and Facebook, she said. “Back in 2006, there was Mothering magazine, and there was an attachment-parenting Yahoo group that I was part of. The conversation was insular, restricted to those self-censoring authorities. But as Facebook burgeoned, I was seeing more and more evidence-based information, and I was open to reading it. Useful infographics, heartfelt op-eds, all sorts of pro-vax material was being broadcast to me. I read it, I changed my mind.”

One more thing, I asked. Was autism a factor for you at all?

“Nope.”

* * *

That is not to say that autism wasn’t a factor for many people, or that it wasn’t one of many factors for even more people. But over and over again, I hear people waive off anti-vaccination arguments by saying, “It’s just one defunct study!” Not one of the people I talked to here or privately cited concerns about autism as a reason for not vaccinating their children. But they all, without exception, were committed to the principles of natural childbirth.

No, the trend to not vaccinate was not brought about by just one study, I’m convinced. It was packaged together with a rejection of the over-medicalization of birth and tied up in an idealized all-natural concept of childbirth and motherhood.

The internet just feeds all of those ideas. That’s what it does best. If you’re looking for psuedo-studies to cast doubt on even the most widely accepted and commonplace belief, you will find some online. (Although, as Laura pointed out, Facebook can actually pull us back into the light by exposing us to a cross-section of ideas recommended by people we actually know. There’s hope yet.)

And I am not trying to slag midwifery or natural childbirth. All three of my babies were delivered by midwives and I had nothing but wonderful experiences. But I sometimes wish midwives didn’t present everything as a completely unweighted choice.

I like being informed. I like giving consent. But I also like to hear what the medical professional recommends. If the only reason for abstaining from my blood sugar test is the unpleasantness of having blood drawn, then I’d probably be better off making sure I don’t have gestational diabetes, right? So why don’t they just say that?

I had a baby in 2006 and I cant tell you that it would have been SO EASY to opt out of vaccinating. Everybody around me was talking about it like it was yet another choice we had to make. On the one hand, public safety … but on the other, wouldn’t it be nicer if kittens could lick the immunity on instead?

Even my family doctor confused us with other patients and said, “So you don’t want to vaccinate, right?” “No! We do! Please vaccinate my baby!”

The only thing that kept me from not vaccinating, really, is the incredible breadth of my skepticism. I am even skeptical of the skeptics.

But while all of this was unfolding slowly over the years, the mainstream medical establishment did very little to stop it that I can see. Correct me if I’m wrong, but I am only just seeing public health campaigns educating the public about vaccinations now. We’ve been talking about the dangerously low vaccination rates for at least five years and probably longer.

Doctors that dismiss concerns out of hand because they either don’t have time or don’t care to explain don’t help confused new parents. The crazy, vast mess of misinformation on the internet doesn’t help. Screaming matches between friends in different camps doesn’t help.

But free information seminars might. In-depth government-run websites could. How about a free helpline where people can discuss their worries?

Trends don’t happen in a vacuum. There will always be anti-establishment people on the fringe who opt out of the mainstream. And I think that’s alright. We can support the fringe. We can deal with that.

But we can’t deal with an entire generation of new mothers thinking they need to decide for themselves whether or not to vaccinate their babies. We have enough to worry about, so why not let the doctors field that one?