Saturday, 22 March 2014

Vaccination Safety and Autism: An Irritating Debate

Measles outbreaks in both Canada and the United States are bringing the debate about vaccination safety and autism out in force again. And, as I often do when I see a Facebook debate among my friends on vaccination safety and the decision not to vaccinate children, particularly when it involves fears about autism, I jumped right into the one that I came across the other night.

The vaccination safety debate just irritates me. Not just because, as the The Daily Beast said so succinctly the other day, "The original study that started us down this insane path by linking the MMR vaccine to autism has been retracted outright", but because of what it says about where we are in how we view autism even if there was a link.

Let me be clear before I proceed along this line of thinking that I don't believe that there's any evidence currently out there that's strong enough to substantiate the claim that there's a vaccination safety issue with respect to autism. But, as a hypothetical, even if there was a link, and say, 1 in 1000 vaccinated children ended up being diagnosed with autism spectrum disorder, what's worse? Taking the risk that your children might contract one of the diseases that are making a comeback after being almost eradicated because fears of fears about autism and vaccination safety (mumps, whooping cough, and the highly contagious measles), and that can potentially have serious health complications, or taking the risk that your child might develop autism?

When I hear someone say, "I won't vaccinate my child because of autism," I think, "Is the idea that your child might develop autism *that* scary?"

There seem a be a large group of parents out there who are scared to death of having an autistic child. That's puzzling and sad to me. And irritating.

The Vaccination Safety Debate: The Disability Issues

I don't think that when people say, "I'm not going to vaccinate my child because I've heard that vaccinations cause autism" that they're picturing autistic people like internationally known scientist Temple Grandin, Pulitzer Prize winner Tim Page, jazz prodigy Matt Savage, or actor Dan Ackroyd. Or figures suspected to be autistic that changed the course of history with their contributions to the world: Mozart, Einstein, and Andy Warhol.

I doubt that they're thinking of how (shocker!) an autistic person could change the world.

I get the sense that they're thinking of a highly stereotyped view of an autistic child: not capable of communicating verbally, unresponsive, continually melting down with no way to prevent it or address it once it's started to happen, and needing constant care. While there are certainly some autistic children whose disability does manifest in this way, it's not by any means what every autistic person experiences. As was said in the vaccination safety debate in which I was involved the other night, and as I've heard said many, many times before (and said myself): If you've met one autistic person, well, you've met one autistic person.

But society still tends to make an extremely problematic (and irritating) assumption that there are few prospects for a satisfying life, or a life that contributes anything to society, for any disabled person that needs a high level of support. And that's simply not true. Judith Snow fundamentally changed how disabled Canadians receive support (and continues to do so) from her wheelchair, and Martyn Sibley is one of the most prolific disability advocates that I know. And so many more! I need to write a blog post just on this subject.

As for not being able to communicate verbally using words, we only need to look at Helen Keller to see that this is a barrier gotten around, or look to the more recent advocacy work of autism advocates Henry Frost and Amy Sequenzia. Henry uses augmentative and alternative communication (AAC)  methods to communicate, and Amy communicates through typing. Communication tools and techniques for autistic people have come a long way, and Henry and Amy (among others) use them to speak compellingly and eloquently about their experience of being autistic and the importance of respect for all people.

Vaccination Safety And The Culture of Fear Around Autism

Related to the above point, the idea that having an autistic child in particular would be catastrophic, both for the child and for the the people that love the child, comes from the way that society has been encouraged to view autism. It's part of why I don't support organizations (like Autism Speaks) that paint having an autistic child as something that will devastate a family. See here and here.

Along this line, analyze the language used in this article about anti-vaccination activist Jenny McCarthy  - autism diagnosis as "tragedy", speaking about how children "slip away" to autism, as if they've died. Rich Lowry, understand that in your own way you're contributing to what keeps parents clinging to this vaccination safety nonsense - their fear - and that irritates me, too, but I'll give you a bit of leeway because your points about why childhood vaccinations are so important are spot on.
These are dangerous illnesses, and the victims of an outbreak are often infants too small to have yet received vaccinations. Jenny McCarthy styles herself a “mother warrior.” If so, the kids sickened in the fallout from reduced vaccinations are the victims of friendly fire. Nothing good can come from undoing one of the miracles of medical progress.

Yes, Rick. I think he's irritated about this vaccination safety debate too!

Some children can't be vaccinated for legitimate reasons. We rely on herd immunity to keep them safe. When large numbers of people don't vaccinate, herd immunity becomes less effective. Not vaccinating a child puts more people in danger than that child.

A Focus on Vaccination Safety Because We All Want Answers

Of course we all want to know what's causing autism and why the rates of autism diagnosis continue to rise. Could it be as simple as (as a participant in the debate suggested the other night) that we're continually getting better at recognizing and diagnosing autism, when in the past it's been called other things? Or because the definition of autism has been somewhat fluid and continues to be so, with the most recent changes in the DSM-V?

I'm not sure that accounts for all of it, but I think it must be some of it.

I just wish that we, as a society, would get it through our collective heads that:

1) Disability isn't the end of the world, even though we've been taught it is

2) Autism (by all definitions, for as long as I've been in this field) is a spectrum disorder, not something that looks the same in everybody.

3) There's no proof that vaccines cause autism.

Until then...see you in the next Facebook debate about vaccination safety. I can't seem to stay quiet when I see one.

Image credit: arsgera / 123RF Stock Photo


  1. Great, great discussion about this "issue" which seems to get people especially discombobulated. I think that often there is another factor at work here which is independent both of evidence about vaccines and of how people view autism. Let's call it the "Wake up sheeple!" factor. It is the reflexive anti-expert, anti-authority, don't listen to The Man, conspiracy enthusiasm that has become a branch of hipsterdom these days. The more evidence people quote, the more it's proof to them of a concerted campaign to discredit rebel truth-tellers. The fact that that original researcher was "struck off" is just proof that "Big Pharma" is protecting it's market for vaccines. It is one of the ways that a certain brand of hippie leftist culture has curdled into total irrationality.

    As for why autism is so intensely feared and loathed, that's a real puzzle to me, too. I think it's because people sense that there are hidden truths inside every autistic person that are either trapped "in there", or that on some level the people are keeping to themselves. Then there is the sadly common idea that there's NOBODY "in there" at all ... the famous lack of empathy autistic people are reputed to have. Mostly I think it is a primal fear of parents to think of having a child they can't "reach", and which doesn't reach out to them in familiar ways. Since you have worked in the field, I'd be interested in hearing more about how you view what autism is. Is there a big, major conceptual breakthrough that people need to make to understand autism differently? If so, what is it?

  2. You are absolutely on target. Yes, people fear autism as well as down syndrome, cp, spina bifida, etc. Are these conditions disabling? Well, it depends. Every disability is not singular, it exists on a continuum. That continuum range for unnoticeable and mild to extremely severe. Each disability ranges from functionality to a total absence of functionality. What people fear the extreme end of each continuum; when you hear about a certain disabling condition, people, in general, see the worst. For example, as a result of genetic testing for Down Syndrome, 90% of fetuses are aborted. Testing can indicate DS, but cannot determine severity, so parents assume the far end of the spectrum....same with autism Too often parents seek to have the perfect child for their self-esteem.
    You are right about the research concerning a correlation between autism and certain joined vaccinations is very mixed and when a correlation exists, it is a wide range of those vaccinated and those who develop autism....the cause of which is speculated but not really known. Environment, genetics, leaky guts, vaccines, all are theories. A measles pandemic, on the other hand, would kill kids. It's ok not to vaccinate if you keep them in a bubble away from other kids till they are adults.