It’s not just dangerous. It’s insulting to autistic people like me.
Like many autistic people, I don’t handle background noise well. My senses and brain can’t separate it from any other sounds. It’s often just as loud as, if not louder than, what I’m trying to listen to. And the effort it takes to try to handle that issue while focusing often leaves me frustrated and drained.
I’ve been experiencing this a lot lately in regards to information, specifically around news stories that feature some terrible combination of anti-science or pseudoscience and autism panic. Whenever I see a story about a measles outbreak, or a headline like “Fake science led a mom to feed bleach to her autistic sons — and police did nothing to stop her,” I get that same overwhelmed and panicked feeling — and I’m just as incapable of tuning it out.
While there are many reasons parents choose not to vaccinate their children, the American anti-vax movement is fueled in part by privileged white people who have bought into conspiracy theories about the risks of vaccines, one of the most pervasive of which is that vaccines cause autism. Meanwhile, we are currently experiencing a measles outbreak — 971 reported cases as of May 30, to be exact — that is the worst the country has seen in almost three decades. It’s a worldwide trend, too, prompting the World Health Organization to declare vaccine resistance a top 10 health threat this year.
Then there’s another type of story I keep seeing: the largely underground phenomenon of parents using everything from turpentine to urine in an effort to “cure” their children’s autism. NBC News recently published an exposé on the dangerous and all-too-common practice of orally and anally administering bleach-based treatments to autistic children. In March, a UK ad watchdog organization ordered 150 homeopaths to stop claiming that they could cure autism through treatments such as giving children up to 200 times the maximum recommended vitamin C dose. Amazon recently stopped selling books that promote bleach as an autism treatment or cure.
None of this news comes as a surprise to me. I’ve been aware of autism-related vaccine conspiracy theories for as long as I’ve been officially aware that I am autistic.
Anti-vax myths start and spread online
Many of these myths have flourished during the social media age. Emma Dalmayne, an autistic advocate with autistic children, discovered online groups dedicated to fake autism cures in 2014 and has been working to expose them ever since. These groups have operated under the radar for years, so it’s hard to track their origin or how they’ve spread. But the treatment that most of them push — a sodium chlorite formula known as “Miracle Mineral Solution” that produces chlorine dioxide when used as instructed — can be traced back to The Miracle Mineral Solution of the 21st Century, a book self-published by former Scientologist Jim Humble in 2006.
Humble and his followers have pushed MMS as a cure for everything from HIV to the common cold. Now a subset of desperate parents who have convinced themselves that autism is caused by toxins or parasites believe they can cleanse their autistic children by giving them MMS enemas, forcing the solution down their throats, or putting it in their baby bottles.
This news isn’t all dire. The anti-vax situation has become dishearteningly worse since I first wrote about the movement’s impact on autistic people four years ago. But so has the public’s awareness of anti-vax narratives and fake autism cures.
Still, all of this adds up and contributes to the constant buzzing reminder that people continue to be ignorant and fearful about autism. It’s hurtful on a personal level. To be constantly reminded that a chunk of the world would rather risk public health crises or funnel bleach into their terrified child’s orifices than have or love anyone like you can’t help but weigh a person down. But what really bothers me is that innocent people are being endangered and abused based on what amounts to little more than overly simplistic and alarmist fiction. The autism that terrifies these parents and guardians is as divorced from the realities of autistic life as their methods are from actual science.
Autism is not some monstrous fate
When it isn’t being caricatured in shows largely produced by and for non-autistic people, like The Good Doctor and The Big Bang Theory, autism is often characterized as a horrible way to live. We cost too much to raise. We destroy marriages, even though the statistics around our supposed home-wrecking powers were made up. A 2009 commercial for Autism Speaks directed by Oscar winner Alfonso Cuarón claimed that autism makes it “virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.” That particular ad has since been pulled, but the sentiment remains.
If I didn’t have a lifetime of experience with autism, I might be scared by these constant messages of doom too. How can we expect people to react to the possibility of loving and caring for an autistic person in a rational manner when the stories this world tells about us are, themselves, irrational? Our society isn’t going to make any meaningful progress against the anti-vax or snake oil cure movements unless we change the way we talk about autism.
I’m not saying we should give it a shiny PR campaign. Autistic people can face significant challenges as a result of both our neurology and a lack of understanding and acceptance. We — and our care partners, for those who need them — are desperate for better services and more financial and emotional support to help us exist in a world that wasn’t built for people like us. Even the most privileged among us face a suicide rate nine times higher than the general population.
Just because autistic life can be difficult doesn’t mean it’s worse than a death sentence, though. We have bad days, but we good ones and neutral ones too. We are human beings, and our lives have value. We don’t need to prevented or eradicated at all costs; we need better services and better public education than what we have now.
We are people, with all of the complexity of the human experience that entails, not a looming boogeyman. Treating us as such could be a far more powerful weapon against anti-science conspiracy theories than any statistic.
Sarah Kurchak is an autistic writer from Toronto. Her first book, I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder, comes out in April 2020.