“It’s scamming parents–and through that the children are suffering”: Interview with Emma Dalmayne

Screenshot_20190428-002122_GooglePodcast: Listen to the podcast here on the audio clip below. (Links to Stitcher and iTunes at the end of this post).


Bio:
  Emma Dalmayne is a mom of six, a home educator and co-founder of Autistic Inclusive Meets, which organizes meetups for autistics of all ages, as well as activist actions on issues that impact the community and advocacy at the governmental level.

Emma leads a UK-based campaign against autism pseudoscience and is the one who raised the alarm about MMS, an underground movement of parents who claim to “cure” their autistic children by making them drink bleach or putting it in enemas–uncovering dozens of MMS sellers in the UK.

In fact, her work on autism pseudoscience established the groundwork for the UK Parliament to begin working towards regulation and enforcement against phony autism cures. Autism pseudoscience is a human rights issue; right now, lax proxy consent laws and a dearth of regulation and enforcement has allowed providers and parents to give children “treatments” with no evidence of benefit and clear evidence of harm. As the UK government concluded in its report:

“Health care fraud is big business and autism is one of its many targets.”

At the core of Emma’s work is a robust honesty about the impact of autism pseudoscience on the children. Too many discussions of autism pseudoscience focus on relative abstracts such as “marketing claims,” “antivax underpinnings” or “parent desperation” at the expense of the most base and crucial matter: children’s health and safety. Emma and other activists are not distracted by debates: autism pseudoscience is damaging and potentially deadly for children. That is why we must act now to get regulations passed.

Autism, Truth and Pseudoscience
Many of the leading voices against autism pseudoscience–and against pseudoscience in general–are autistic and neurodivergent people, whether it is against the corporate greenwashing of the climate crisis; the social media echo chamber of the antivax movement; or the morass of bullshit that is autism pseudoscience. It appears that calling out bullshit is our MO.

I wonder: what is it about being autistic that fosters almost a necessity to resist doublethink, to identify bugs in a system or elephants in a room, to speak bluntly regardless of social consequences and to have such a knack for systems thinking– whether it may be machine logic, engineering or -in a sociological context- just simply understanding when an institution has it all wrong and how systems could run better? I think that at the heart of it dwells a unique kind of free spiritedness, connected to a pure focus on working to remedy injustice, even if it comes at great expense to ourselves at times.

When the website Real Social Skills coined the phrase “Noncompliance is a social skill” it struck a chord in our community. Regardless of our diversity in communication platforms, level of support needs or any other factor, we tend to learn and adapt best with intrinsic rewards and don’t generally want to operate with the currency of tokens and treats. It’s why autistics perform better in job interviews when asked to show the skill set rather than make disingenuous chit chat about “your biggest strengths and weaknesses”. It’s also why compliance training doesn’t work on autistic people like it does on neurotypicals (a subject we will address in depth in my upcoming interview with Alfie Kohn!)

I recently read a compelling essay in The Atlantic by Conor Friedersdorf, who focuses on Greta Thunberg as well as Soviet and other dissident culture to see connections between autistic ways of thinking and a seeming necessity to resist. He quotes Russian American journalist Masha Gessen, who states:

“If you simply can’t do doublethink, if your brain explodes, then it is less discomfiting for you to become a dissident than to exist within a society. For most people, it’s more comfortable to do whatever you’re required to do. If it requires doublethink, it requires doublethink. But if you just can’t do doublethink, then you become a dissident.”

Emma does not engage in doublethink. She intuitively places autism pseudoscience within the broader system and is able to look at each of the broken parts to give the kind of nuanced analysis we need to take on the problem. She says:

“It starts at diagnosis. It starts with the attitude at diagnosis when they say: ‘I’m so sorry to tell you, your child has autism.’ The [parents] immediately think, ‘Oh God I’ve got to help my child,’ They go on the internet and Google treatments for autism. And one of the first results they’ll find there is heavy metal poisoning.”

Remove the cultural panic about autism and you will remove most of the market for autism pseudoscience. This is very simple systems thinking about the problem. Find ways for multiple players within the system to promote acceptance, the social model of disability and meaningful accommodations, to make a better life for autistic kids and adults. In doing this, we tamp down the panic and the market for cure products.

Emma is doing that through her meetup group, by fostering accepting, fun environments for children and parents to get together with other families and have the kind of normal experiences they deserve: connections with peers, play without stigma, acceptance, love and respect in the public sphere. This kind of project shows the best practice from a systems point of view. Don’t just talk about labeling claims, don’t just work for regulation…also build a broader change in the culture around you.

Emma has given me much to think about. Thanks, Emma, for being on the show!

Links from this conversation:
Report from the Manchester Commission on Autism: A Spectrum of Harmful Interventions for Autism

Esssay: Can Neurodiversity Defeat Doublethink?

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Eating in the 4th Dimension: Interview with Alan Levinovitz

alan photo

cw: eating disorders

Podcast
Listen to the episode here at the audio link below (Link to Stitcher and iTunes at the end of this post).

Bio
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.

The episode
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!

Useful links
Interview with Alan Levinovitz

The Gluten Lie

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