Bio Dr. Whitehouse is the Angela Wright Bennett Professor of Autism Research and the Director of Clini-Kids at the Telethon Kids Institute. He is Professor of Autism Research at the University of Western Australia and Research Strategy Director of the Cooperative Research Centre for Living with Autism (Autism CRC). He has published over 300 peer-reviewed journal articles and is an advisor to State and Commonwealth Governments on policies relating to autistic children. He was awarded a Eureka Prize for his research and in 2023, he was a Western Australian of the Year award winner.
I spoke with vaccine researcher and expert Dr. Paul Offit, whose book Autism’s False Prophets explores false narratives about autism, including the myth that the MMR vaccine causes autism. We talked about that history, as well as the present challenge of the current anti-vaccine movement and the need to speak the truth, even when it’s complicated.
Listen to the podcast by playing the audio file below, or on streaming sites like Spotify, Stitcher or ApplePodcasts. Transcript below.
Bio Dr. Offit is the Director of the Vaccine Education Center and an attending physician in the Division of Infectious Diseases at Children’s Hospital of Philadelphia. He is an award-winning and internationally recognized expert in the fields of virology and immunology, and is a past member of the Advisory Committee on Immunization Practices to the CDC and currently a member of the Food and Drug Administration Vaccines and Related Biological Products Advisory Committee.
I talked with Dr. Lucy McBride about Covid anxiety, how it’s impacted us all and what we can do about it. We also talked about how family practitioners can make their practices more accessible for autistic patients–and all patients–by thinking outside the box. #AutisticHealthAccessProject
Listen to the podcast by playing the audio file below, or on streaming sites like Spotify, Stitcher or ApplePodcasts.
Bio Dr. Lucy McBride is a practicing internal medicine physician in Washington DC who has been seeing patients for over 20 years. During the pandemic, she came to prominence for talking openly about the importance of addressing mental and physical health together. She is the author of the newsletter, Are You Okay? and the podcast Beyond the Prescription. She is helping to redefine health as more than our cholesterol and weight but really about awareness, acceptance and agency for us as patients.
New! I’ve started a Substack with portions from my upcoming book about the problem of exploitative clinical trials on autistic children & the need to reform autism research and services. Check it out here.
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.
Bio Matthew Smith is a professor at the University of Strathclyde and the Centre for the Social History of Health and Healthcare (CSHHH) in Scotland. He is the author of The First Resort: The History of Social Psychiatry in the United States (Columbia UP, 2023). He has also authored many articles and several other books and monographs including: Hyperactive, The Controversial History of ADHD;Another Person’s Poison, A History of Food Allergy; An Alternative History of Hyperactivity; and Pathologies and Politics, Dietary Innovation and Disease from the Nineteenth Century(co-edited by David Gentilcore).
Guy Stephens is the founder and executive director of theAlliance Against Seclusion and Restraint(AASR), a non-profit organization he started in 2019. AASR is a community of over 20,000 parents, self-advocates, teachers, school administrators, paraprofessionals, attorneys, related service providers, and others working together to inform changes in policy and practice to reduce and eliminate the use of punitive discipline and outdated behavioral management approaches and end the school-to-prison pipeline. The vision of the Alliance Against Seclusion and Restraint is safer schools for students, teachers, and staff.
Chantelle Hyde is the lead Canadian Volunteer with the Alliance Against Restraint and Seclusion. With the support of her husband Sheldon, Chantelle became an active advocate in New Brunswick and now nationally against restraint and seclusion after learning that their daughter was being locked in a room at school. Chantelle has been getting the word out across Canada, most recently beingfeatured on W5, an investigative series on Canada’s CTV News, in their investigative report on seclusion and restraint. She is also co-founder of theCanadian Coalition Against Seclusion and Restraint in Schools.
Today I spoke with Julie Roberts, founder ofTherapist Neurodiversity Collective(TNDC). We talked about the ABA industry’s troubling attempts to dominate autism services and funding, as well as the culture shift needed to increase support for neurodiversity-affirming autism supports and services.
Listen to the podcast on the audio link below. Also available on Spotify, Stitcher or iTunes.
Bio Julie Roberts, a formally late-identified Autistic woman, is a Speech-Language Pathologist, neurodiversity educator and activist who foundedTherapist Neurodiversity Collectivein 2018 andPublic School Neurodiversity Collectivein 2022. Her professional experiences include private practice ownership for 7 years, and being a multi-state Clinical Director, and National Field Director of Corporate Compliance for one of the largest post-acute rehab companies in the U.S. She currently works in her favorite setting: the U.S. public school system. Julie’s articles and educational resources have reached over three-quarters of a million people.
I wrote this short spoken word about the experience of grief after all we’ve been through in the pandemic. It’s really just a story, without a message except: we need to talk about our feelings, perhaps now more than ever.
Listen to the podcast on the audio link below. Also available on Spotify,StitcheroriTunes.
Bio Alan Levinovitz is associate professor of religious studies at James Madison University. He specializes in classical Chinese thought, as well as the intersection between religion and science. His most recent book, Natural, explores how the mistake of worshipping nature can lead to pseudoscience and injustice. We’re going to talk about the book today, in the context of neurodiversity, and also about the ideas of “natural immunity” and “natural medicine” that arose in response to the pandemic.
“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.
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 ofPassages, 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.
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.
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 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.
My guest this episode is Alicia Broderick, author of the new book The Autism Industrial Complex: How Branding, Marketing, and Capital Investment Turned Autism Into Big Business. Her book traces the cultural, political, and economic history of autism. We talk about the history of autism services, how industry greed often gets in the way of useful approaches that can help families and some advice for families of newly diagnosed kids on how to find the best approaches and sift through all the hype.
Listen to the podcast by pressing Play on the audio file below. Also available on Spotify, Stitcher or iTunes. Read the transcript at the link below the audio file
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.
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 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.
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.
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.
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!
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.
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.
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.
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.
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.
“”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.
I 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.”
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.
. 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.
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.