Signal Boosting: Vaccines Don’t Cause Autism, But That’s Not the Point

I just read this post on Caffeinated Autistic‘s blog, about an article in The Scientific Parent called “Vaccines Don’t Cause Autism, But That’s Not the Point“. It was a very moving post, and led me to read the article. Like Caffeinated Autistic, I’m going to quote some of the article here, because I really do think that this deserves to be signal boosted.

The author starts out by giving her story around vaccines and autism.

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.

….

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.

….

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?

—Leslie Waghorn, “Vaccines Don’t Cause Autism, But That’s Not the Point”

She then goes to explain what exactly it was that changed her thoughts on the dialogue about vaccines and autism. This is the really moving part of the story.

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.

—Leslie Waghorn, “Vaccines Don’t Cause Autism, But That’s Not the Point”

This. This, what’s written above, is so important, and gets overlooked so often. We know the obvious issues around the vaccine and autism debate: The fact that the whole issue was faked, the fact that it results in children not getting what are now basic immunizations and can result in the possibility of epidemics and death from diseases that we have had under control for decades, etc.

But we don’t necessarily ask how we, as autistics, feel when this issue is brought up. How it not only implies to us that we’re “bad” or “wrong” or “defective”, etc – all those nasty words that can hurt so badly; but also how it affects the way other people view autistics.

Please, think about that.

And read the article itself. It’s a good one.

😐 tagÂûght

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