cw: eating disorders
Listen to the episode here at the audio link below (Link to Stitcher and iTunes at the end of this post).
Professor Alan Levinovitz is an associate professor of religious studies at James Madison University. He specializes in classical Chinese philosophy and the relationship between religion and science. In addition to scholarly articles, he is the author of The Gluten Lie: And Other Myths about What You Eat –and The Limits of Religious Tolerance. He has also appeared on the Netflix series A User’s Guide to Cheating Death. His next book is about how nature gets treated like God.
Pseudoscience in Autism Parent Culture
When Bax was 5, we were at a playgroup with some other autistic kids. The kids were running around when suddenly one little girl stopped, bent over and threw up into the bushes.
Sorry we left early! her mom texted me later, Sienna’s on a new dose of B12 that’s been bothering her tummy.
I didn’t exactly want to ask, but I did: Why? Sienna’s mom explained that she and her husband inject Sienna with B12 vitamins in their kitchen every morning before school (per their naturopath’s instructions) to prevent “autistic methylation”. They also give Sienna six herbal supplements to swallow each morning and have her on restrictive diet (no sugar, no wheat, no dairy) – all supposedly to “detoxify” her brain and cure her autism.
Aside from the disturbing nature of the rituals themselves–all based in pseudoscience–there was something else that upset me on a very deep level. It was the way that Sienna’s mom talked about these treatments as though they were the most ordinary thing in the world, like giving a child a Flintstones vitamin. Making a child endure daily injections and fake pills to cure an imagined disease is aberrant behaviour, yet it is normalized within the autism parent community and the broader culture –and even shared on some mainstream autism “advocacy” websites.
Too often, when parents talk about these phony cures, everyone just quietly defers to the parents or may even question themselves, thinking “well, maybe I don’t really understand autism…” Even worse, bystanders may assume that it’s okay to do things to an autistic child that they would never accept doing to a neurotypical child, just because the child is disabled.
But it’s not okay. These phony treatments come at a high cost that includes physical risks and emotional harm. I started the Campaign Against Phony Autism Cures in 2018 to try to combat some of this, building off the tradition of other activist mothers such as Melissa Eaton, Amanda Seigler, Fiona O’Leary, Emma Dalmayne and Shannon Des Roches Rosa, (some of whom I interview in upcoming episodes). We have the support of the broader #actuallyautistic community, as well as allies across a range of disciplines, such as Alan.
While we need to fight for regulation and enforcement to protect children today, we also need to educate for tomorrow–to change the very mindset that leads parents to choose autism pseudoscience. One powerful step is to challenge the myth of autism as a disease (it is not, according to the APA, the DSM and other scientific bodies) and to understand it instead as a disability to accommodate and–most importantly–to accept. It is through this acceptance, which we all want, that children and parents can connect and stay connected. Without autism acceptance, we will just continue to have the chaos and pseudoscience we see today.
Alan and I discussed how the desire for empowering rituals around food can be twisted by marketers to sell a product or a plan, such as the GAPS, DAN or MAPS diets. We also talked about the negative impact of restrictive diets on individuals; the problem with proxy consent; the idea of battle in the language around autism parenting; the inaccessibility of medical jargon; the need for #actuallyautistic voices in autism organizations– and so much more. Alan also discussed food restrictions within traditional explanatory framework/context of world religions and talked about the commodification of rituals: incredibly interesting!
As Alan said: “We need to reframe the whole narrative of how we understand autism and need to make sure there are more and different resources in place for parents. …A part of the solution to these problems will be changing the context in which parents and children are receiving autism diagnoses and changing the framing narrative that people use to understand those diagnoses. If we can do that we would really go a long way towards improving things for everyone.”
I really loved this podcast too because it has an uplifting ending, something I needed to hear that day. Thank you, Alan!
Interview with Alan Levinovitz