“Everyone Can Do Something to Stop Autism Pseudoscience”: Interview with Melissa Eaton

Melissa photoIn this podcast, I interviewed Melissa Eaton, one of the first (and most effective) campaigners against autism pseudoscience. We talked about phony autism cures and what we can all do to stop the people selling them.

Listen to the podcast right here by clicking the audio link below.
Listen to this episode on Stitcher here
Listen to this episode on iTunes here

Transcription, by Julie-Anne Lee: Transcript_Melissa_Eaton_Noncompliant

Bio: Melissa Eaton, a parent of an autistic child, became aware autistic children were being abused with harmful pseudoscientific and unregulated treatments in 2014, after her son was diagnosed. She joined other activists who were campaigning against it and she is one of the key figures in the movement to get phony MMS “bleach for autism” treatments banned, among others.

Her work has been featured on NBC and other media and she recently co-wrote an OpEd for the New York Times about the impact of MMS marketers on the Covid crisis. She has worked tirelessly, giving her time and energy for free to stop autism pseudoscience. Because of her efforts, the movement has made many strides in the uphill battle to get our regulators to recognize the human rights of autistic children and protect them. Melissa is a true hero and I was honoured to speak with her for this podcast!

The episode: We started with a summary of some of the major phony autism cures/ autism pseudoscience. We focused on chelation, MMS (bleach for autism) and GcMAF. We discussed why they are dangerous; how popular they are; how sellers market to parents via social media; and how much sellers profit from their scams. We then explored legal regulations… when they work (stories of success) and why it is often hard to get governments to stop the scammers from selling these products (the challenges we still face).

We also talked about the role of social media and journalism in exposing and de-platforming the scams. We discussed the broader societal biases against autistic people–and against children that allow parents to embrace these “cures” and thatalso  prevent regulators from using common sense and truly shutting them down.

This last point pivoted us to a discussion of autistic acceptance and how the rights of autistic children to health and safety is core to the neurodiversity movement. The first group to identify autism pseudoscience was the autistic-led UK-based group Autistic Inclusive Meets when it launched in 2016. In Canada, Autistics for Autistics launched in 2017 with stopping phony cures an integral part of its mandate. In the US, Fierce Autistics and Allies and In the Loop About Neurodiversity also immediately incorporated fighting pseudoscience into their platforms. The project Thinking Person’s Guide to Autism regularly covers the need to confront autism pseudoscience and to make reforms within the field of autism science.

But the campaign to end autism pseudoscience does not get any support from traditional, large, NT-led “autism” organizations such as Autism Speaks and Autism Canada (both of which have a long history of reinforcing autism pseudoscience). Melissa and I talked about that towards the end of the podcast:

Anne: What’s happening to these children is torture. Autistic children are being tortured. Where are the “autism organizations”? They are nowhere to be found. Because somewhere deep inside, they can’t make that leap towards autistic acceptance. And it shows that the “autism organizations” are really broken. The people who are going to bring about human rights protections are the autistic-led self-advocacy organizations, because they’re the only ones who are… even making a statement about autism pseudoscience.

These appear, to us, to be really basic concepts, so we really have to ask ourselves why. Why won’t the mainstream autism organizations take a stand on this?

Melissa: These [mainstream] organizations continue to collect money from communities. This money could be going to things that actually help autistics. And they’re not addressing the problems of autistics like autistic-led organizations are doing. Autistic-led groups definitely have the grasp of what needs to happen and the supports that are needed within their communities, yet they’re overshadowed by these bigger organizations who do not have autistic interests in mind.

Melissa and I talked then about how we keep hope, and the smaller victories that build towards the kind of major reform we are slowly achieving. Melissa pointed out the role that each individual can have in education and the importance of grassroots advocacy. “Everybody can do something,” whether it is signing petitions, reporting, flagging, complaints, letters, media awareness, or many other means of support. Conversations in parent groups also make a world of difference. After the interview was over, Melissa and I talked about a few groups online that are bringing these parent discussions to the fore, including Autism Inclusivity and Autistic Allies.

Thanks for listening!

“There is an inherent conflict of interest in professional self-regulation”: Interview with Bad Science Watch’s Ryan Armstrong

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This week I interviewed Ryan Armstrong of the pseudoscience watchdog group Bad Science Watch Canada.

Listen at the link below or on Stitcher here
or on iTunes here

Read the transcript below the audio file.

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Transcript by Julie Ann Lee: Transcript_Ryan_Armstrong_Noncompliant

Bio
Ryan Armstrong is the Executive Director of Bad Science Watch Canada, an independent non-profit consumer protection watchdog and science advocacy organization dedicated to improving the lives of Canadians by countering bad science.

Ryan has a PhD in biomedical engineering and an undergraduate degree in medical biophysics (BMSc). His research has spanned across multiple domains including bioethics, medical imaging, image processing, human-computer interaction and surgical simulation. He became interested in science-based activism after encountering false cancer treatment claims in his community. Learning that these practitioners were regulated health professionals, he found that the regulatory system was not adequately protecting the public.

The Episode
Ryan and I talked about several issues around “natural health products” (such as vitamin and herbal supplements) and off-label use of prescription drugs in Canada. These issues include:

  • lapses in inspection for integrity;
  • misleading labeling claims;
  • proxy consent for children and others who can’t give informed consent.

In addition to regulatory issues, Ryan and I discussed the predatory nature of false marketing claims and the future of regulation in Canada. I learned so much from this interview about the issues in Canada, as well as major projects in the works and up ahead for Bad Science Watch, an amazing organization. Ryan, thank you for this insightful interview!

Resources
Bad Science Watch website
Twitter: @badsciencewatch
On Facebook: Bad Science Watch

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

Screenshot_20190428-002122_GoogleListen to the podcast on the audio clip below, or on Stitcher here and iTunes here.

Read the transcript, below the audio file.

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Transcript by Julie Ann Lee: transcript_Dalmayne_Noncompliant_podcast

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: 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 an absence of regulation and enforcement has allowed providers and parents to give autistic children “treatments” that could kill them. As the UK government concluded in its report: “Health care fraud is big business and autism is one of its many targets.”

Eating in the 4th Dimension: Interview with Alan Levinovitz

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Listen to the episode by clicking the audio link below, on Stitcher here on iTunes here.
Read the transcript below the audio.

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Transcript by Julie Ann Lee: transcript_Noncompliant_Alan_Levinovitz

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.

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.”

Thank you, Alan!

Useful links
Interview with Alan Levinovitz

The Gluten Lie