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 below the audio link.

.
Transcript: 
Transcript_Noncompliant_Eaton_Nov22

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

 

Inclusive learning spaces for neurodivergent teens: Talking with Passages Centre founder Kristina House

Kristina House

I had such an inspiring conversation with Kristina House, who’s co-founded Passages, an experimental hybrid learning space for neurodivergent students and other students, in Toronto!

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

Read the transcript below audio link.

 

Transcript, by Julie Ann Lee: Transcript_Noncompliantpodcast_K_House

Bio
Kristina House has been as an active member of the Toronto homeschool community for more than a decade, including work through the Ontario Federation of Teaching Parents and as a co-founder of the Toronto Homeschool Symposium. She worked as an American Sign Language in English Interpreter for over 15 years and is now the executive director of Passages, a learning space founded in 2020. Passages offers in-person programming for kids between the ages of 11–18, learning at a pace that’s right for them.

Link
Passages Centre

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

Talking about Covid, monkeypox, health disinfo & “the 2022 effect” with virologist Alex Greninger

Portrait photo of a white man with shhort broanhair in a blue dress shirt, smiling
Alex Greninger

This is pt 1 of 2 special podcasts about monkeypox, Covid-19 and science communication.

I had an amazing conversation with University of Washington virologist Dr Alex Greninger, whose team innovated one of the earliest Covid tests. We talked about how they developed the test; public health policy; the current monkeypox crisis; other viruses & “the 2022 effect”; and the virological and sociological implications of the pandemic since 2020.

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

 

Bio
Dr Greninger is the Larry Corey Assistant Professor in the Department of Laboratory Medicine and Pathology, Assistant Director of the clinical virology laboratories at the University of Washington Medical Center, and a board-certified clinical pathologist. He earned an MS in Biological Sciences/Immunology from Stanford, a Master’s in Epidemiology from Cambridge, an MD/PhD from University of California San Francisco, and completed his laboratory medicine residency at the University of Washington.

Links
Info on the Monkeypox health crisis, from GMHC
News: Innovator of the Year awarded to directors of University of Washington virology lab 

Neurodiversity Libraries, activism & community-building: Interview with Lei Wiley Mydske

Lei Wiley Mydske

In this episode I speak with the amazing
Lei Wiley Mydske, founder of the neurodiversity library movement and creator of the Neurodivergent Narwals. We talk about neurodiversity libraries (including how to start one!), community-building, disability justice, activism, hope and more.

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

Read the transcript below the audio link.

.
Transcript, by Julie Ann Lee: Transcript_Lei_Wiley_Mydske_Noncompliant

Bio
Lei is a writer and artist, creator of the Neurodivergent Narwhals, co-director of neurodiversitylibrary.org, and founder of the neurodiversity library movement. They are the Community Outreach Coordinator at the Autistic Women & Nonbinary Network and a contributor to the group’s anthology “Sincerely, Your Autistic Child”. Lei has presented at a range of conferences and gatherings on autistic advocacy and neurodiversity libraries in the community. Lei is the co-owner of Stanwood Tattoo Company in Stanwood Washington, which also hosts a neurodiversity library.

Technical note
There were a couple tech glitches in this episode, apologies!

Podcast update
Noncompliant is mostly on hiatus until 2023.

Algorithms and Outrage: Talking social media with Charles Arthur, author of Social Warming

In this episode, I interview Charles Arthur, the author of Social Warming: the dangerous and polarising effects of social media. We discuss the history of social media and current problems with social media, particularly disinformation on a global scale, as well as what we can do to combat this crisis.

Listen to the podcast via the audio file below, or on Spotify, Stitcher or iTunes here.

Read the transcript in the link below the audio file.
.

.
Transcript by Julie-Ann Lee: Transcript_CharlesArthur_NCPodcast

Bio
Charles Arthur is a journalist who worked on daily national papers in the UK for twenty years, and has written three non-fiction books since 2011, including the one we’ll discuss, Social Warming. He met Bill Gates when Microsoft was small, Steve Jobs when Apple was smaller, and Larry Page (of Google) when Google was already pretty big. He’s visited the offices of Facebook and Twitter, but their CEOs remained elusive. He’s been freelance since 2014 and lives in southeast England.

“If you look at how much has changed in the last 5 years, we’ve definitely made progress”: A conversation with autistic lawyer Haley Moss

Haley Moss

I had such a great conversation with autistic lawyer Haley Moss about her book Great Minds Think Differently.

In this episode, we discuss neurodiversity in law and the workplace, autistic hyperfocus and Haley’s upcoming book, The Young Autistic Adult’s Independence Handbook (launching November 2021 & available by preorder)!

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

Read the transcript below the audio link.
.

.
Transcript by Julie-Ann Lee: Transcript_Haley_Moss_NC_Podcast_0821
.
Bio
Haley Moss is an openly autistic lawyer practicing in Florida. She was appointed to the Florida Bar Young Lawyers Division Board of Governors and the Florida Bar Journal Editorial Board. In addition to being a lawyer, Haley is a neurodiversity advocate and author. Her work has been published in The Washington Post, Huffington Post, Teen Vogue, Fast Company, and other media. She is the author of Great Minds Think Differently: Neurodiversity for Lawyers and Other Professionals and an upcoming book, The Young Autistic Adult’s Independence Handbook.

Links
Great Minds Think Differently: Neurodiversity for Lawyers and Other Professionals
The Young Autistic Adult’s Independence Handbook
Note: The Florida Bar Foundation’s “Developmental Disabilities & the Criminal Justice System,” referenced in the podcast, is not currently online: please contact the podcast if you want a pdf.)

On conflicts of interest in autism research: Interview with Kristen Bottema-Beutel and Micheal Sandbank

In this episode, I talk with Professors Kristen Bottema-Beutel and Micheal Sandbank, who have done a systematic review and meta-analysis of 151 group design studies of interventions for young autistic children. For this work, Dr. Sandbank was awarded the Young Investigator Award in 2021 from the International Society of Autism Research. Drs Bottema-Beutel and Sandbank have also done further studies into conflicts of interest (COIs) in autism research. Among their findings are that COIs are prevalent in several areas of autism research. They also found that ABA researchers, who frequently had conflicts of interest, reported these conflicts as rarely as 2 percent of the time.

We discuss what conflicts of interest are, the teams’ findings and some of the implications for autism research going forward.

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

.
Transcribed by Julie-Ann Lee: Transcript_Noncompliant_Bottema-Beutel and Sandbank

Bios

Photographed for Boston College by Caitlin Cunningham

Kristen Bottema-Beutel is an Associate Professor in the Lynch School of Education and Human Development at Boston College. Her research focuses on social and language development, and social interaction dynamics in autistic children and youth. She is interested in pairing qualitative and quantitative methods to better characterize autistic communication and sociality, and in developing community-based strategies to support meaningful engagement of autistic students. More recently, she has explored metascience topics such as researcher ethics and research quality in intervention research for autistic children. Dr. Bottema-Beutel is the director of the autism specialization at LSEHD, a program that prepares future special educators to support autistic students.

Micheal Sandbank is an Assistant Professor of Early Childhood Special Education at The University of Texas at Austin. She researches social communication and language interventions for young children with disabilities. Dr. Sandbank is the lead researcher on Project AIM , a scoping systematic review and meta-analysis of group design studies of interventions for young children on the autism spectrum. She was awarded the Young Investigator Award in 2021 for this work, from the International Society of Autism Research.

Links

Journal of Child Psychology and Psychiatry. Sandbank, et al. Research Review: Conflicts of Interest (COIs) in autism early intervention research – a meta‐analysis of COI influences on intervention effects

Journal of Child Psychology and Psychiatry. Bottema-Beutel, et al. Adverse event reporting in intervention research for young autistic children.

Journal of American Medical Association-Pediatrics. Sandbank, et al. IBI Intervention Recommendations for Children With Autism in Light of a Changing Evidence Base

“Co-Regulation is Key”: A Conversation with Occupational Therapist Greg Santucci

In this episode, I talk with Occupational Therapist Greg Santucci about the problems with ABA from his perspective as a practitioner, as well as new and better approaches in schools and the challenges of the post-pandemic period in education. An interesting and inspiring conversation!

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

Read the transcripts, attached below the audio link.
.

.
Transcribed by Julie-Ann Lee: Transcript_Noncompliant_Santucci

Bio
Greg Santucci
is a Pediatric Occupational Therapist and the Founding Director of Power Play Pediatric Therapy. He has been an OT for over 20 years, and currently is a Supervisor of Occupational Therapy at Children’s Specialized Hospital in New Jersey. Greg is the creator of the Model of Child Engagement and has been lecturing nationally for over a decade on topics related to sensory processing, child development, behavior and best practices in the public schools. He has dedicated his career to promoting neurodevelopmentally-informed, relationship-based interventions to help parents and teachers support children of all abilities and learning styles.

Links
Learn more about Greg’s work at https://gregsantucci.com/
Greg’s Facebook page: https://www.facebook.com/gregsantucciOT

“The things we don’t talk about”: A Cross-Interview with CripChat UK!


I had the great pleasure and honour of talking with Shabaaz and Pete from CripChat UK, on their podcast. We discussed autism pseudoscience, the Sia film controversy and much more.

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

Transcript: Transcript_CripChatUK_1
.

.
Listen to CripChat UK on Podbean here. Great guests and discussions every week!

 

 

“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.

How “crunchy” got crushed: An interview with naturopathic doctor Matt Brignall

Matt photoIn this episode, I talk with Matt Brignall, ND, about how the natural health movement has been co-opted over the past 3 decades by capitalist interests, as well as what we can all do to counter Covid pseudoscience and antivax.

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


Transcription by Julie-Ann Lee: Transcription_Matt_Brignall_Noncompliant

Bio: Matt Brignall, ND is a naturopathic doctor in Tacoma, Washington. He currently works in a community-based primary care practice. For nearly 20 years, he was a professor in the naturopathic training program at Bastyr University. He left because he felt that the alternative medicine community was losing its ethical bearings, and becoming a threat to individual and public health. In addition to his practice, he is currently working as part of the Medical Reserve Corps COVID-19 response team. Matt is the parent of a 20-year-old daughter with Rett syndrome, and is active in disability advocacy.

Links from the podcast:
Inside Monsanto’s Millennial Outreach GMO campaign

Steve Silberman’s TED Talk about antivax and the power of storytelling

New York Times: Donald Trump and Covid Pseudoscience  (I co-wrote this OpEd!)

Washington Post: The Empire of Joseph Mercola

Washington Post: The powerful right wing networks behind the re-open protests in the US

NYT: Corporate interests behind the re-open rallies

DeVos -funded group organized re-open rallies in Michigan

Canada: Free North Patriots recruit from antivax groups for re-open rallies

SPLC: Right-wing militias and antivax converge at re-open rallies

Media Matters: FB said they wold remove re-open protest events. It didn’t

Canada, Press Progress: Who is behind the Free North Patriots?

NBC News: Natural News Pages Removed from Facebook

“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.

 

“Creating a home environment that works for everybody”: Interview with Shannon Rosa

shannon “”There’s a lot of people out there who are going to try and tell you what your kid needs, but really, autistic people are the ones who actually do know.”

I had a fascinating conversation with Shannon Rosa, co-founder and editor of The Thinking Person’s Guide to Autism,  about parenting, autism pseudoscience and autistic acceptance. Our conversation, which wandered between the personal and the political, circled back to the core messages of equity, compassion and inclusion.

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

Read the transcript. See link below the audio file.

 

.
EPISODE TRANSCRIPT Shannon_Rosa_transcription

Bio:
Shannon Des Roches Rosa’s writing and interviews are featured at Huffington Post Parents, The New York Times, The Wall Street Journal, MacWorld, Parents Magazine and more. Shannon is a co-founder and editor of The Thinking Person’s Guide to Autism. She has edited several anthologies and contributed stories to numerous books and the newly edited version of the classic she co-edited, The Thinking Person’s Guide to Autism is soon to be published. She lives with her family near San Francisco.

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

Screenshot_20190428-002122_GoogleI was so honoured to have Emma as a guest on the podcast. She 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.”

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

Read the transcript, below the audio file.

.
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.

“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