In this, the final episode of Noncompliant, I spoke with Shannon Rosa, editor of Thinking Person’s Guide to Autism. She shared her memories of her good friend Steve Silberman, author of the groundbreaking history of autism & the neurodiversity movement, Neurotribes, which featured Shannon and her family. We talked about Steve and his legacy for our community.
This episode features clips from the first episode of Noncompliant, where Steve talks about autism and his work, and includes a closing note of thanks to Noncompliant listeners as the podcast ends.
Bio Shannon Rosa is senior editor of Thinking Person’s Guide to Autism, an autism information and advocacy nexus. Her writing can be found in The Washington Post and the anthology Autistic Community and the Neurodiversity Movement, among other places. She lives near San Francisco, California, with her husband and adult autistic son.
I was thrilled to talk with Tony Spiridakis and Alex Plank about the new film Ezra, which Tony wrote and produced alongside director Tony Goldwyn, and which Alex associate produced, acted and consulted on. (Read my review of Ezra here.) We take a look behind the scenes at how the film was developed and produced on set, and how the film is aspirational for new films with autistic characters.
Listen to the podcast by playing the audio file below, or on streaming sites like Spotify, ApplePodcasts, Pandora, etc
Tony Spiridakis is an award-winning screenwriter, director, producer, and actor with nearly four decades in the film and television industry. He is a father of two and a strong advocate for autism awareness. He supports a variety of autism-related schools and organizations, including The Help Group, The Center School, Birch Family Services, Exceptional Minds, and We’ve Got Friends.
Alex Plank is a producer and actor, known for Ezra, The Good Doctor, The Bridge and other works. He is also well known in our community as the founder of Wrong Planet, an online community for autistic people and a place where a lot of autistic people found each other and found out more about themselves. Alex is an associate producer of Ezra and consulted on the film from a neurodiversity perspective.
I spoke with Dr. Andrew Whitehouse from the University of Western Australia about autistic life, gut hype, same-foods, the problem of pseudoscience and the shifting nature of autism research.
Listen to the podcast by playing the audio file below, or on streaming sites like Spotify, Stitcher or ApplePodcasts.
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.
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).
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
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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.
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.
Bio
Michael began stand-up comedy at the age of 13. He has performed stand-up shows, keynote addresses and panel presentations across Canada and the US. He just published the book entitled “Funny, You Don’t Look Autistic” and recently delivered a TEDx Talk on the topic of autism acceptance. He has also consulted on the television show “Ransom” to ensure authenticity of an autistic character and has appeared on CBC television and radio.
Links mentioned in the podcast
Michael’s book: Funny, You Don’t Look Autistic
Canadian Down Syndrome Society: “Anything But Sorry” video
Pablo show: Pablo-Official YouTube channel
Michael’sFacebook page
I had an amazing conversation with University of Strathclyde professor Matthew Smithabout the trajectory of the ADHD diagnosis in the last half of the 20th century and shifts in child psychology as well as Ritalin marketing and sales.
We discussed the impact of society’s responses to ADHD in kids, as well as the problem of teaching to the test and the current use of ADHD drugs for performance-enhancement or as an “easy fix” replacement for meaningful inclusion. I also asked Matt about an innovative new pilot approach to schooling in Musselburgh, Scotland, where many children had been receiving the ADHD diagnosis.
Bio
Matthew Smith is Professor of Health History within the Centre for the Social History of Healthcare. He is Vice Dean Research for the Faculty of Humanities and Social Sciences at the University of Strathclyde. He has written many books about the history of medicine, including two about ADHD and Another Person’s Poison: A History of Food Allergy –as well as co-editing the 2016 collection: Deinstitutionalisation and After: Post-War Psychiatry in the Western World (2016).
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.”
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.
I had a great conversation with Alan Levinovitz about 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 talked about the negative impact of restrictive diets on individuals, the problem with proxy consent and more. Alan also discussed food restrictions within the framework of world religions and the commodification of rituals: incredibly interesting!
Listen to the episode by clicking the audio link below, onStitcher here on iTunes here. Read the transcript below the audio.
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 seriesA User’s Guide to Cheating Death.
Transcribed by Julie Ann Lee: Transcript_ SteveSilberman-Noncompliant . Bio Steve Silberman is an award-winning science writer whose articles have appeared in Wired, The New York Times, The New Yorker, and many other publications. His book NeuroTribes became a widely-praised bestseller, winning the 2015 Samuel Johnson prize for non-fiction and was chosen as one of the Best Books of 2015 by The New York Times, The Economist, The Independent and many others. His TED talk, “The Forgotten History of Autism,” has been viewed more than a million times and translated into 35 languages. He lives with his husband Keith in San Francisco, where he is working on a new book, The Taste of Salt (discussed in this podcast).
The impact of Neurotribes Neurotribes really changed the public conversation about autism in some radical ways. It meticulously traces the history of the autism diagnosis, synthesizing a forgotten history of the residential institution era, while also giving detail and context to competing notions of the diagnosis in the medical literature across time (and the impact of that competition). The book traces shifting understandings of autism in society, explaining how medicine, culture and grassroots activism came together for both a rise in diagnosis and new understandings about autism and neurodiversity. Neurotribes creates a context for what we see today: how our social institutions and media interpret, respond and portray autism.
Since writing Neurotribes, Steve continues to speak and write about autism, but always with a mind to refer to “the real experts”: autistic people. We talked about this, as well as his new book project; neurodiversity; autistic history; platforms of communication; states of being; the rise of false news and our need for honesty; inspiring new youth movements; and the power of continuing the work of social justice when we have no choice but to carry on.