I had an amazing conversation with Fergus Murray, a Scottish science educator, writer, autistic advocate and author of the Monotropism.org website.
We talked about the concept of monotropism, which was co-founded by Murray’s late mother, Dr. Dinah Murray, as well as Fergus’s experiences growing up in a neurodivergent household and the joys of Autscape! We also discussed the problems of the Spectrum 10k project and aspie supremacy, the future of neurodiversity and the importance of being weird.
Listen to the podcast by playing the audio file below, or on streaming sites like Spotify, Stitcher or iTunes.
Bio Fergus Murrayis an autistic science teacher, writer and community organiser–a co-founder, and the current chair, of AMASE (Autistic Mutual Aid Society Edinburgh). Fergus’s mom, Dinah Murray, was a pioneering autistic researcher and activist as well as co-creator of the theory of Monotropism. Fergus has authored the websitemonotropism.organd is the founder ofweirdpride.day.They also createslow-motion videos of water, andgiant puppets.
I had a fascinating conversation with Finn Gardiner, Director of Policy & Advocacy for theAutistic People of Color Fundabout the incredible work of the Fund’s mutual aid project that positively impacts so many individuals’ lives. We also discussed institutional ableism, racism and “nice white lady syndrome”, as well as the troubling problems with racism in autistic self-advocacy organizations and how the Fund’s advocacy work is challenging this and making radical change in the neurodiversity movement.
Listen to the podcast by playing the audio file below, or on streaming sites like Spotify, Stitcher or iTunes.
Bio Finn Gardiner is Director of Policy & Advocacy for the Autistic People of Color Fund. He is a Boston-based queer, Black, and disabled writer, designer, community organizer, speaker, editor, researcher, advocate, activist, and artist. Finn has a Master of Public Policy degree from the Heller School for Social Policy and Management at Brandeis University and a bachelor’s degree in sociology from Tufts University. He’s spoken at the White House’s 2016 LGBTQ Disability Day, the United Nations’ World Autism Day event in 2019, and other venues. Before joining the Fund, he worked as a communications specialist for the Lurie Institute for Disability Policy, and before that, he was a policy fellow at the Autistic Self Advocacy Network.
“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.
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 beenfeatured on NBCand other media and she recently co-wrote anOpEd for the New York Timesabout 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.
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.
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.
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.
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.
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.
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.
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.
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 Tourismand 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:
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.
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).
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.
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.
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.”
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.
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.
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.
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.
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.
Today’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!
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.
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.
. 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 (specificallyProloquo4TextandProloquo2Go) 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.