Podcast: 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