The Genesis 2 “bleach cult,” past and present : A conversation with pseudoscience de-bunker Melissa Eaton

“Basically they’re slowly being poisoned with a corrosive agent.” It is difficult to hear about what happens to children who are trapped by the so-called bleach cult, a multi-level marketing scheme that has spread across the continents, promising “cures” for everything from broken bones and cancer to Covid-19 and autism.

The 4 leaders of a major MMS business are now in jail, awaiting trial on federal charges. What is next for their trial—and for the children, as the MMS continues to proliferate and regulators begin to act to stop their crimes?

Listen to the podcast on the audio link below. Also available on Spotify, Stitcher or iTunes.

Read the transcript (available soon) below audio link

 

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.

Links
NBC feature on MMS
Bloomberg feature on Operation Quack Hack
OpEd, NYT by Melissa Eaton
US Dept of Justice update on the case, July 2022

 

The power of international neurodivergent collaborations: Interview with AutCollab’s Jorn Bettin

Jorn Bettin

I had a fascinating conversation with AutCollab co-founder Jorn Bettin about new approaches to autism; namely, thinking outside the box of the pathologizing approach of the DSM and moving towards a collaborative, de-colonizing, grassroots approach to autistic liberation—one that also helps to heal our broken world. (Just some light, chatty conversation amongst autists!)

Listen to the podcast on the audio link below. Also available on Spotify, Stitcher or iTunes.

Read the transcript below audio link.


Transcript: Noncompliant_podcast_transcript_Jorn_Bettin

Bio
Jorn Bettin is an Autistic anthropologist by birth and a knowledge archaeologist by autodidactic training. He has a background in mathematics, and enjoys working closely with domain experts in transdisciplinary contexts. His current work focuses on the co-design of new community-oriented and patient centric models of care. Jorn has co-authored several books on creative collaboration and model driven product line engineering. He is a trustee of the Autistic Collaboration Trust – a global mutual support hub for neurodivergent individuals and ventures. He is also part of the Design Justice Network, regularly working with those who are most adversely affected by design decisions — about healthcare service delivery, new technologies, and the planning of communities.

Links
Autcollab website

Design Justice website

Book: The Beauty of Collaboration at Human Scale by Jorn Bettin

Evolutionary design

Autcollab projects

Neurodiventures

Understanding Human Collective Behaviour

“There are a lot of areas autism researchers have viewed as deficits that can actually confer advantages”: Talking with MIT researchers Anila D’Mello and Liron Rozenkrantz

I had an amazing conversation with Drs Anila D’Mello and Liron Rozenkrantz from MIT about their research review and other work about autism, rationality and cognition!

Listen to the episode by clicking the audio file below or on Spotify, Stitcher or iTunes here.

 Read the transcript below the audio file.
.

.
Transcript by Julie-Ann Lee: Transcript_Noncompliant_Podcast_DMello_Rozenkrantz

Bios

February 3, 2020 — McGovern Institute for Brain Research at MIT. Photo by Caitlin Cunningham Photography.

Anila D’Mello is a cognitive neuroscientist interested in social cognition and language. She is currently a postdoctoral researcher in the Department of Brain and Cognitive Sciences at the Massachusetts Institute of Technology where she uses neuro imaging to examine how the brain learns from previous experiences to inform future behavior. She also uses personalized study designs to promote strengths-based approaches to studying social cognition and language in autism.

Liron Rozenkrantz

Liron Rozenkrantz is a neuroscientist interested in the role of beliefs and expectations on cognition and well-being. She is a postdoctoral researcher at the Simons Center for the Social Brain and conducts her research at the MIT Brain and Cognitive Sciences Department. Liron has been studying perception and cognition in children and adults with autism for the past 7 years. Her current line of research looks at “enhanced rationality” in autism and how autistic individuals seem to be less susceptible to cognitive biases.

Link
Rozenkrantz, D’Mello & Gabrieli: Enhanced Rationality in Autism Spectrum Disorder. Trends in Cognitive Science. July 2021.

Note
The Noncompliant podcast is taking a break from new episodes. To access previous episodes and other content, as well as updates on the podcast and the book, please visit this website.

“I worry FDA Expanded Access will become a new way of bringing products to market”: Talking with Jeremy Snyder and Leigh Turner about “stem cells for autism”

In this episode, we discuss the basics of stem cells, medical tourism, false claims about stem cells as an autism treatment, bioethical issues within the field of stem cells and methodological issues in autism research—with discussion of Duke University’s Marcus Center for Autism and The Stem Cell Institute of Panama among others.

This is such an informative podcast for anyone who wants to understand what’s going on with stem cell marketing and the autism industry. Thanks to Professors Snyder and Turner for their time.

Listen to the podcast at the link below or or on Stitcher or  iTunes here.

Read the transcript below audio.
.

.
Transcribed by Julie-Ann Lee: Turner_Snyder_Transcribed_Noncompliant

Bios and Links

Professor Jeremy Snyder

Jeremy Snyder is a Professor in the Faculty of Health Sciences at Simon Fraser University. His background is in Philosophy and his research focuses on public health ethics.

His most recent book is Exploiting Hope: How the Promise of New Medical Interventions Sustains Us–and Makes Us Vulnerable.

 

Professor Leigh Turner

Leigh Turner is an Associate Professor at the University of Minnesota Center for Bioethics, School of Public Health, and College of Pharmacy. Turner’s current research addresses ethical, legal, and social issues related to stem cells and regenerative medicine products. He is a co-editor of Risks and Challenges in Medical Tourism and The View from Here: Bioethics and the Social Sciences.

Professors Turner and Synder have collaborated on research and writing about stem cell tourism, including direct to consumer stem cell clinics that claim to treat autism, including the following:

 

The role of private equity and lobbying in ABA funding: Talking with investigative journalist John Summers

A portrait photo of a white male with short brown hair, blue shirt and brown coat
John Summers

John Summers’ recent expose in The Nation looks at the relationship between private equity companies and the autism service Applied Behaviour Analytics (or ABA) in Massachusetts, where he lives.

In this episode, John and I talk about the business of ABA and the problematic industries built around autism. His analysis is incredibly key to understanding this industry. Don’t miss it!

Listen to the episode at the audio link below or on Stitcher or  iTunes here.

Read the transcript below the audio file.

.
Transcript by Julie Ann Lee: Transcript_Noncompliant_John_Summers

Biography: John Summers is Founder and President of Lingua Franca Media, Inc. He has a Ph.D. in intellectual history and has written, taught and presented extensively on topics in culture and history. His recent expose in The Nation looks at relationships between private equity companies and a form of autism service: Applied Behaviour Analytics (or ABA).

 

 

“Letting people know that it’s ok to be your original self”: Talking about breast cancer & autistic community with Melanie Keiling

I had such a heartfelt and illuminating conversation with Melanie, founder of the  Autistic Grandma online community first about autistic online communities, then about combating sexism in the world of breast cancer care.

Listen to the audio by clicking the audio link below or on Stitcher here or  iTunes here

Read the transcript by clicking the file below the audio.
.

.
Transcript by Julie Ann Lee: Transcript_Melanie_Keiling_Noncompliant
.
.
Bio

Melanie Keiling is an autistic mother of autistic children. She runs the blog Autistic Grandma, and campaigns for autistic human rights, and works with the autistic community directly to provide emotional support for individual self healing, self care, and personal development. Her goal is to create a stronger community by providing a platform for change in the way autism is viewed by the world, and to help gather autistics together to support one another.

Links
Autistic Grandma page on Facebook

“Going Flat” After Mastectomy: Patient-Reported Outcomes by Online Survey. Dr. Jennifer Baker, et al. Annals of Surgical Oncology (2021)

Women Who ‘Go Flat’ After Mastectomy Report Being Generally OK With It. Kate Kneisel. Medpage Today. February 5, 2021. Study Authors: Jennifer L. Baker, Don S. Dizon, et al.

Flat closure after mastectomy: Are your patients satisfied with the results? Kimberly B Bowles. San Antonio Breast Cancer Symposium, Published February 2020.

“Most of the victims have to move on from these pathological relations”: Interview with Dr. Marc D. Feldman about medical child abuse

I had a very informative and thought-provoking conversation with Dr. Marc D. Feldman, an expert on medical child abuse and factitious disorder. We talked about medical child abuse, including “Munchausen-by-proxy” and the abuse of autistic children through autism pseudoscience. We also talked about supports for survivors and what we all can do to stop the abuse.

Listen to the podcast by clicking the audio link below or on Stitcher here or iTunes here
Read the transcript below the audio link.

 

.
Transcript by Julie Ann Lee: Feldman_Transcript_Noncompliant_The_Podcast

Bio
Dr. Marc D. Feldman is Clinical Professor of Psychiatry and Adjunct Professor of Psychology at the University of Alabama in Tuscaloosa. A Distinguished Fellow of the American Psychiatric Association, he is the author of 5 books and more than 100 peer-reviewed articles in the professional literature. Dr. Feldman is an international expert in factitious disorder, Munchausen syndrome, Munchausen by proxy, and malingering.

In his recent book, Dying to be Ill: True Stories of Medical Deception, Dr. Feldman, with Gregory Yates, has chronicled people’s acts and motivations in fabricating or inducing illness or injury in themselves or their dependents.

Links:
American Professional Society on the Abuse of Children (registration required for some resources but the content is free.

 

“Punishments and rewards can get one thing, under certain conditions – temporary compliance” Interview with Alfie Kohn

Kohn photo This is a fascinating interview with Alfie Kohn, who has been researching and writing about education, parenting, authority and co-operative learning for years, driving home a simple fact: rewards and punishment are two sides of the same coin –and they’re not helping us to raise the kind of children we say we want to raise.

“The problem with ABA,” says Kohn, “is not just with the method, but with the goal. It shouldn’t surprise anyone that when these kids grow up they are struggling to try to figure out how to make decisions, be assertive and advocate for themselves …because the whole precondition for the temporarily effective use of rewards is the opposite of independence—it’s dependence.”

Listen to the podcast at the link below or on Stitcher here and on iTunes here

Read the transcripts below the audio file.

.

Transcription by Julie-Ann Lee: Alfie Kohn transcript_Noncompliant podcast_2020

Bio: Alfie Kohn is an expert on the problem of compliance-training and reward-based systems in the schools, the work world and in the family. His many books include the classics PUNISHED BY REWARDS (1993) and BEYOND DISCIPLINE: From Compliance to Community in which he explores alternatives to our merit-based approach at work and school. He has also critically examined the influence of behaviorism on our education system and the power of cooperative learning, altruism and empathy.

Links from the conversation:
Alfie Kohn’s website: https://www.alfiekohn.org/

“We need much better standards of research in autism intervention”: An interview with Dr. Damian Milton

damian In this broad-ranging interview, Dr. Damian Milton & I discuss the theory of the “double empathy problem”; hyperfocus/flow state; autistic parenting; the medical versus social model of disability; the subjectivity of outcome measures; and the diverse ways in which autism itself is framed and defined.

Listen to the interview at the audio link below or on Stitcher here or  iTunes here
Read the transcript below the audio file.

Transcribed by Julie Ann Lee: Transcript_Milton_Noncompliant

Bio
Dr. Damian Milton is a sociologist and lecturer at the University of Kent, on Intellectual and Developmental Disabilities through the Tizard Centre. He is also a consultant for the National Autistic Society in the UK, a Director at the National Autism Task Force, Chair of the Participatory Autism Research Collective (PARC Network) and involved in many other research and practice related projects. His most recent book is A Mismatch of Salience: Explorations in Autism Theory and Practice. His scholarship is central to a paradigm shift to understandings of autism in the field.

 

Trauma-informed Mindfulness, Teaching & Care: Interview with Dr Sam Himelstein

sam photo

I recently talked with Sam Himelstein, the president of the Center for Adolescent Studies , about the pitfalls of pop-culture “mindfulness” and the importance of trauma-informed care. We also talked about the problems with behaviourist approaches that focus only on measuring outcomes for compliance rather than quality of life.

Listen to the podcast on audio link below, or  on Stitcher here or on iTunes here.

Read the transcript, below the audio file.

.

Transcript, by Julie Ann Lee: Himelstein_transcript-Noncompliant

Bio
Sam Himelstein, Ph.D., is a Licensed Psychologist specializing in working with juvenile justice-involved youth, addiction, and trauma. He travels the country speaking at conferences and conducting professional trainings and is the president of the Center for Adolescent Studies.  His mission is to help young people become aware of the power of self-awareness and transformation, and train professionals with similar interests.

Links
The Centre for Adolescent Studies

“Regulatory bodies should not be hiding behind CAM policies” Interview with Dr. Philippe Chouinard

Philippe
It was an honour to speak with Dr. Philippe Chouinard. Dr. Chouinard has worked to stop big online retailers from listing products such as MMS (autism “bleach cure”) and challenged the normalization of marketing pseudoscience within the professional organizations to which he belongs.

We talked about Canada’s need for regulatory reform on complementary/alternative medicine (CAM). As Dr. Chouinard put it: “Regulatory bodies should be adhering to evidence-based standards, not hiding behind CAM policies.” This episode was cut a bit short, so it ends with some of my own thoughts about proxy consent and CAM.

Listen at the audio link below –or on Stitcher here , or iTunes here

Read the transcript (below audio file)


Transcript, by Julie Ann Lee: Transcript_Chouinard_Noncompliant

Bio
Dr. Philippe Chouinard is a family physician based out of Moncton New Brunswick. He has been involved in a developmental paediatrics practice with a specialization in ADHD & autistic populations since 2010. His work has led him to take a strong stance against pseudoscience marketing to physicians and health misinformation on social media.

Links
Health Canada’s Health Product Complaint Form
Physicians’ Guide to Autism Pseudoscience, by A4A

Disrupting the Autism Services Market: Interview with Foundations for Divergent Minds founder Oswin Latimer

Oswin Latimer-1Today’s guest is Oswin Latimer, co-founder of Foundations for Divergent Minds, a framework designed by autistic and neurodivergent people for use by families and professionals. FDM works on the principle that when a child struggles it is because their surroundings need to be adjusted–and assessment should find what is missing from their environment. FDM is a portable, affordable approach that is based on equity and access –and in the short time since its launch, it has disrupted the autism services market in a brilliant way, as we discuss in the podcast!

Listen to the full podcast at the audio link below or on Stitcher here or on iTunes here

Read the transcript, below the audio link.


.
Transcript by Julie Ann Lee: Transcribed_Noncompliant_Oswin_Latimer

Bio
Oswin Latimer is an indigenous, non-binary, Autistic adult, parent to 3 neurodivergent children and a disability advocate. Oswin is a founder of Foundations For Divergent Minds, which we will focus on in this episode. Prior to founding Foundations for Divergent Minds, Oswin was Director of Community Engagement with the Autistic Self Advocacy Network (ASAN) and in addition to activist and education projects there, they represented the autistic community to policymakers in the US Departments of Labor,  Education, Personnel Management and others.

After leaving ASAN, Oswin spent several years as a disability consultant, advising parents on ways to set up their homes and create individualized education plans that better met their child’s needs. They also compiled and edited Navigating College: A Handbook on Self Advocacy Written for Autistic Students from Autistic Adults, among other projects.

Link:
Foundations for Divergent Minds

“People have the right to communicate in the method that is best for them, period.” An Interview with Derek Burrow

For this episode, I interviewed Derek Burrow, an Ottawa-based librarian, writer and tabletop RPG player who is part of a movement to normalize AAC and increase accessibility to it.

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

Read the transcript (link below audio file).

.
Transcribed by Julie Ann Lee: Transcript_Noncompliant_Burrow
.
Bio
Derek Burrow is an Ottawa-based librarian and freelance writer who is also deeply passionate about tabletop roleplaying games, with 25 years in the hobby. Derek uses augmentative communication, also known as AAC (specifically Proloquo4Text and Proloquo2Go) to communicate, and is  exploring how augmentative communication can be normalized within society and also incorporated into tabletop gaming. Derek wrote the latest support documentation for Proloquo2Go and Proloquo4Text. He is also involved in Autistics for Autistics, the Canadian autistic self-advocacy organization and as a consultant on accessible materials and services in Ontario.

About AAC
Augmentative and Alternative Communication (AAC) is any tool, system or strategy for communicating rather than verbal speech. AAC can include pictures; gestures; sign language; visual aids; speech-output devices like phones or iPads; and more. Augmentative and alternative communication (AAC) is an essential aspect of life for non-verbal and semi-verbal autistic people and communication access is a right. Unfortunately, many are still denied access to AAC, a topic we discuss in the podcast.

The episode
This interview is so informative, broad-reaching and thought-provoking. Derek and I talked about various aspects of AAC and his experiences before and after getting access to AAC, as well as AAC in tabletop roleplaying (RPGs).

We also talked about the social applications of the RPG model. As Derek said: “Everyone has strengths and weaknesses and in any group of people, someone is going to have a skill that no one else possesses. In gaming, we design characters around their strengths and the world is set forth in such a way as to let them succeed through them. That’s a far better model than real life where we are often put in places that attack our weaknesses and are expected to excel.” The best aspects of the RPG community are a model for our broader culture in creatively cultivating co-operation, valuing diversity and ensuring accessibility.

Because this was one of my first interviews, I was a bit nervous on the mic! But it was a great way to start off the podcast. I hope you enjoy it as much as I did.

Links from the conversation:
Deej, the movie

AAC right-to-access, legal cases

More about AAC