I take the decision not to vaccinate personally. I’ve tried to have empathy for the other side, I’ve tried to tell myself that it’s none of my business, but I can’t and it is. Someone who refuses to vaccinate their children because they’re afraid of autism has made the decision that people like me are the worst possible thing that can happen to their family, and they’re putting everyone at risk because of it. I’ve been told by some anti-vaxxers that they don’t mean my brand of autism; they mean non-verbal autism, or as they are so fond of calling it, “profound autism.” I’m not about to take any solace in the idea that they’re willing to make exceptions for autistic people who can perform as neurotypical, or at least pose as little annoyance to neurotypicals as possible. That just means that I will cease to be of any value to these people if I am no longer able to pass as one of them, and that they see no value and no humanity in anyone who communicates or behaves differently from them. Tell me again who has the empathy problem?

The best that I can muster in the anti-vaxxers’ defense is that they’re not 100 per cent responsible for the anti-autism sentiment fueling their movement. The idea that autism is an unparalleled tragedy didn’t happen in a vacuum. It came from the very people who claim to support us.

Take Autism Speaks, for example. The world’s most prominent autism-related charity has a pretty cuddly exterior. Celebrities toss money at it. People wear blue things to help it raise awareness. It claims to help autistic people and their families. Why would anyone question its intentions? It would be absolutely absurd to run a charity for people you hate, after all. Right?

But Autism Speaks isn’t really a charity for autistic people. It’s a charity for neurotypical people who have been afflicted with the horror of having autistic people in their lives. Since its inception in 2005, Autism Speaks has perpetuated the idea that people with autism are a burden and somehow “lost,” and they’ve refused to listen to any actual autistic people who disagree with their party line. It’s supported a number of dangerous and dubious treatments, like electroshock therapy and chelation, a lead poisoning treatment that has many risks and no proven benefit as an ASD cure, all in the name of making autistic people appear more neurotypical. Its official statements consistently refuse to acknowledge any humanity in autistic people, or recognize that their families experience anything other than abject misery. In its 2013 Call For Action, founder Suzanne Wright, who has an autistic grandson, wrote that families with an autistic member “are not living. They are existing. Breathing — yes. Eating — yes. Sleeping — maybe. Working — most definitely — 24/7. This is autism. Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future. This is autism.” And honestly, that’s one of the less offensive things she’s said about us.

This is far from true for the countless families who have spoken out against Autism Speaks. It’s certainly not the case for mine. We are all, last I checked, living. We work together to bridge our differences in communication, sensitivities, attributes, and detriments to go about our lives in a way that expands far beyond the moment-to-moment. We’re no more or less imperfect or tragic than the average family. We don’t even have measles. I have good days where my strange and intense interests give me a unique perspective in my writing and my focus helps me get it down on paper. I have bad days where I can’t ride public transit without having a panic attack and I have to leave the room when my husband chews food because I find the sound of it unbearable and overwhelming. I have stimmed to my heart’s content and I have hit myself. Throughout all but the worst of it — depression is a common comorbidity of autism, likely because living in the neurotypical world is often trying — I’ve been pretty sure that I am “living,” and better for it. Throughout all of it, my loved ones have preferred my autism to my possible illness or death, or the deaths of others. I’d say I was grateful, but really, this should be a given.

Autism Speaks is currently urging parents to vaccinate their children, though it was funding and supporting vaccine-related research as recently as 2009. But it continues to spout the kind of anti-autism rhetoric that made people who aren’t so great with critical thinking so scared in the first place.