When I was studying vaccine safety communication in grad school, I didn’t really think about autism as being a part of the conversation. That correlation had been disproved so thoroughly time and time again, I thought about autism only in a statistical sense. I thought of it in terms of t-tests and chi-squares.

Yes, I had loved ones that were on the autism spectrum or had children that were to varying degrees and I appreciated the challenges they faced, but vaccines were never part of our conversation, and why would they be?  Hundreds of studies with hundreds of thousands of data points both retrospective and prospective, and the correlation had been disproven.

At times when we’re faced with a parent or a friend that has a concern about something, we try to allay their concerns instead of addressing whether those concerns were valid to begin with.  In a clinical setting providers have a short period of time to address parents’ concerns and having a larger conversation about risk and what it means to have a child with autism really means just isn’t feasible.  The conversation gets shortened to simply “vaccines don’t cause autism.”  I cringe to admit it now, but I was once part of that problem.

As Julia and I say over and over again on this site, language matters, and I didn’t realize how much my comments could have hurt some people. But as Julia and I also say, it’s OK and important to change your mind with new information. This is the story of how I came to change how I think about vaccines and autism.

Answering the same questions from parents time and time again can be exhausting.  It can become difficult to find a new way to say the same thing a different way.  When a parent would express fear about vaccinating because of the perceived risk of autism, I would use phrases like, “parents don’t need to be afraid that vaccines cause autism,” and “the fear that vaccines cause autism.” I was hearing that a parent was afraid and I was addressing that fear. In my mind the message was cut and dry: vaccines don’t cause autism. Often in the science community we can tend to view language as factual instead of contextual. Vaccines don’t cause autism, that’s true, but what’s the underlying concern about autism. Why is it something to be afraid of?

It wasn’t until I was driving home from class one day and was listening to C-SPAN radio. I was in my mid-20s and living in Washington, DC. This would seem weird anywhere else in America, but in DC it’s perfectly normal. The panel discussion being broadcast was teens and adults with autism and how federal funding could better support them. As the show closed, the moderator asked if anyone on the panel felt a vaccine had caused their autism.

Silence.

One teen panelist spoke up, “no, but it hurts that you would ask that question.”

The moderator’s tone softened, he apologized and asked why. I’m going to paraphrase the boy’s response because it has been several years and for the life of me I have not been able to find a transcript of this event anywhere, which has driven me to madness. If anyone from C-SPAN reads this and knows the talk I’m referring to, please send me a transcript! The panelist’s response was incredibly moving and I wish I could give him credit for it and do his response justice.

As I recall his response was, “because it makes me feel like I’m damaged or broken, when I’m not. I was born this way. My brain just works differently than most other people’s. When people talk about vaccines and autism it makes me feel like I’m not a person but a ‘bad result.’ It reminds me that no one wants a kid like me and parents will risk their kid’s lives and everyone else’s just to make sure their kid doesn’t turn out like me.”

There was silence on the radio. By this time I’d pulled into our parking spot at home and sat in the car in silence as well. It was a moment of epiphany.

Oh bleep, I thought. I’ve never thought of it like that.

The panelist’s words were so loaded and unfiltered. He was speaking from the heart and I could imagine the pain he felt when he described that some parents would rather have their children die than turn out like him. That is an incredible and completely unnecessary burden for any child to carry around, yet any time vaccines were discussed, those assumptions were coded in language.

The boy’s response was so moving and reframed the vaccines and autism debate in my mind so completely, I felt incredible shame for even joking about vaccines and autism and rightfully so. Embedded in my comments was the same coded language the panelist spoke of. The implications of my language were that autism was so terrible it was to be feared, it was something to be avoided at all costs and most of all it made someone different in a way that wasn’t positive.

I changed my language after that. I’m very, very aware of how I talk about vaccines and autism affects those who have autism. I see people in the science-based community make these statements or jokes sometimes about vaccines and autism and I cringe. Around October I start seeing the jokes, “just got my flu shot, so far no signs of autism!” I know there’s no malicious intent towards people with autism, but the outcome is the same.  They make them with the best of intentions, unaware of how their language may make those with autism feel.

I now speak up whenever I feel the person would be receptive to hearing how their language could be interpreted. Most of the time I see the light bulb go off in their head and they say they’d never thought of it like that before and will be aware of it going forward. Sometimes the person pushes back and says it’s just a joke and they’re talking about how people perceive autism, not people with autism themselves.

One thing is for certain, I’m careful about how I talk about vaccines and autism now. I may still get the language wrong from time-to-time, but I’m doing my best to make sure my language is respectful.

 

Tags: , , ,
Categories: Disability + Disability Advocacy, Infectious Disease + Vaccines