I know this is the kind of blog post that has the capacity to attract some attention and not all of it positive. For that reason I hesitated about whether or not I would even publish it but decided to forge ahead. Why did I decide to share my thoughts about this book? Well, I’m a parent of twin boys who are both on the autism spectrum and I have absolutely no scientific background beyond a Biology ‘O’ Level. So I started out with the intention of writing a review of The Panic Virus that other non-scientifically inclined parents might find useful. However, as I was drafting my comments the review evolved into something else. Part of the reason I read the book in the first place was because I felt a need to wrestle my own thoughts on the vaccine/autism issue into some kind of coherence. I think this blog post has become a way for me to further marshal those thoughts by writing them down. Hopefully others will still get something useful out of it!
Let’s kick off this summary of my reflections with an unequivocal statement: I hate that the vaccine issue has resulted in such a stark division within the autism community. I believe our primary goal as a community should be to do whatever we can to foster support for individuals and families living with autism. It makes me extremely sad to think of the time, attention and money being spent instead on arguments about vaccines.
As anyone who has a connection with the autism community knows, there is a great deal of animus around this issue. I have no intention of contributing to this. I have ASD parent friends whose views on vaccines are in complete opposition to mine but I still consider them friends and have no intention of excoriating them as “stupid” or “idiots” as I so often see other people do. I know these people aren’t idiots and I also know that they are operating from the very best of intentions – they want to do the right thing by their children. If these friends are having a bad day I honestly couldn’t care less what they think about vaccines – I want to be there for them, to provide the same support and help as I would for any friend. As ASD parents we have so much in common, we’ve shared experiences that others simply do not, and probably cannot, fully understand. But instead of focusing on all that we have in common and doing whatever we can to help each other and our kids, we divide ourselves into two camps based on what we believe when it comes to vaccines.
I think it is possible to articulate a position on vaccines without being insulting. Here’s my position anyway - those who believe that autism is caused by vaccines have been misled. I don’t view the vaccine/autism issue as a ‘controversy’ because the data on this is clear. I fear that those who choose not to vaccinate their children are leaving their communities vulnerable to life-threatening diseases. I also fear that the re-emergence of diseases like measles and rubella could lead to a backlash against the autism community, which none of us would want to see happen. I should make it clear that I welcome comments on this post including the sharing of your views on this issue. However, if someone chooses to be insulting or disrespectful to myself, Mr. Mnookin or anyone else, I reserve the right not to publish their comment. This is my blog and whilst respectful disagreement is encouraged; negativity and vitriol have no place here.
On to the book! Those who know me know I love history. Contemporary political history I find especially fascinating, which explains why my master’s thesis was on welfare policy in the first Clinton administration and may also explain why my best friend is someone who is obsessed with Watergate. The Panic Virus is essentially a potted history of both vaccines and the anti-vaccine movement. Mnookin focuses on the vaccine/autism issue in particular, but he does a good job of putting both vaccine development and the opposition to vaccines within a historical context. Since the very first use of inoculations and vaccines a number of people have reacted to them with fear and revulsion. The current anti-vaccine movement is in many ways the latest incarnation of this reaction. But Mnookin also narrates the ways in which pharmaceutical companies and the medical establishment have failed in assauging this understandable fear of vaccines – the egregious errors that were made in relation to the launch of the polio vaccine for example. He paints a picture of a medical establishment that, when it comes to both vaccine development and communicating with the public, has often been ineffective and lacking in proactivity.
The book is a wonderful synthesis of an extremely large amount of research. The bibliography is impressive – nearly 40 pages worth of books and articles as well as court cases and various media productions. Mnookin also interviewed a large number of people for the book including parents, as well as members of the anti-vaccine movement. He’s a good writer, and I don’t just mean in the sense that the book is very easy to read even for someone like me who is pretty illiterate when it comes to science. His sympathy for all the parents in this book is apparent and he manages to discuss a subject that has generated an inordinate amount of heat in a way that I found even-handed and calm. This book is not a polemic but it’s also neither dispassionate nor bloodless. It’s a fine balancing act that I believe he executes very well.
Aside from the fact that I enjoy contemporary history, the other main reason for reading the book was to try and get some answers. Not about whether vaccines cause autism because the data is clear on that. No, I wanted to try and reach an understanding about why some ASD parents and members of the general public continue to believe that vaccines do cause autism in the face of overwhelming evidence that they do not. Mnookin offers a number of explanations for this and I’ve outlined below the ones I found most interesting and thought-provoking:
- There is a chapter in the book on cognitive biases which outlines how even our rational, logical thought processes can often lead us inadvertantly down the wrong path. One of the things discussed is the phenomenon that can occur when a group of people who think alike not only end up reinforcing each others views but succeed in polarizing them as well. I recall this same phenomenon being discussed by various political commentators last year when analyzing the state of U.S. conservatism. Blogging on his website, Julian Sanchez was looking to explain why certain Republicans believed in such counter-factuals as the existence of death panels in the Obama administration’s health care legislation or that Barack Obama was not born in the United States. Sanchez noted a tendency amongst these folks to obtain their news and information from very limited sources – mostly Fox News and talk radio – and that when other conservatives disagreed with them (like Bruce Bartlett and David Frum), these individuals were then castigated as apostates who could no longer be considered conservatives. Sanchez used the phrase ‘epistemic closure’ to describe this phenomenon and The Panic Virus describes the same thing at work, albeit in a very different context. I was struck anew by the importance of ensuring that we don’t become cocooned in an environment where all the information we receive simply serves to confirm and reinforce our existing beliefs and ideas. We must continually and deliberately engage with people we don’t always agree with (and by engage I don’t mean fight with).
- Mnookin also explores the idea that our society has come to value feelings and intuition over almost everything else. Personal experience, anecdotes and doing “what feels right for you” has become the sine qua non of how decisions are made. This idea was a tough one for me to reflect upon because it was trusting my “mummy instinct” that got Oliver his ASD diagnosis. The twins were born at 29 weeks and as a result were developmentally delayed from birth. I had to push really hard for the doctors to agree to an ASD assessment for Oliver because his symptoms at the time could all be explained by a developmental delay due to prematurity. But I knew it was something more and I turned out to be right. I believe that parents are the experts when it comes to their children and I think our knowledge of and instincts about our kids are something we should place a lot of weight on. Nonetheless, I can accept that it’s not the only thing we should base our decisions on and that cultivating the ability to reassess our feelings and not feel threatened by information that may be in opposition to our instincts is very important.
- When people first find out that my children are autistic it surprises me how often they will ask whether I think vaccines cause autism. How has this vaccine/autism connection become so entrenched in the general public’s mind? Mnookin analyses media reporting and notes that the first thing that people hear, particularly if it is the subject of sensational and extensive reporting, is often the only thing they subsequently remember. The best example of this in the book is the British media coverage of Andrew Wakefield’s Lancet paper which was, to say the least, not exactly objective. It introduced the general public to the idea that the MMR vaccine caused autism, an idea which has proved to be extremely tenacious. Subsequent mentions of vaccines and autism, even if they are refuting any connection, can actually serve to reinforce a connection between the two in people’s minds. In thinking about this I was reminded of Dave Cullen’s book Columbine which was a detailed account of the shootings at Columbine high school. The one thing that people remember about that event is that the two shooters were class nerds who were bullied by jocks. It was the first explanation for the shooting provided by the media and most people still believe it to be true. Cullen’s book demonstrated not only that it wasn’t true but that subsequent reporting about the shootings had virtually no impact in correcting the record.
I haven’t even begun to touch on all the ideas explored in Mnookin’s book, just the ones I personally found most interesting and helpful in trying to understand peoples’ views towards vaccines. If you enjoy well-written non-fiction then I strongly encourage you to read this book for yourself. The best compliment I can pay Mnookin is to say that as a single, working mother of ASD twins, it was well worth me finding the time to read it.