Episode 49. Transforming schools and autism therapy: A conversation with Dr. Nancy Marshall

I had an amazing conversation with Dr. Nancy Marshall, a therapist and researcher, who previously worked as Child and Youth Counselor in Toronto public schools. We discussed her new, qualitative research on autistic people’s experiences with and perception of ABA. We also talked about the impact of the neurodiversity movement on autism services, and the evolution of new supports and educational practices that are neuro-affirming.

Listen to the podcast by playing the audio file below, or on streaming sites like  Spotify,   ApplePodcasts,  Pandora, etc


Bio
Nancy Marshall is a registered social worker and youth worker who holds a PhD in Education from York University, Toronto. She has close to 20 years experience as a Child and Youth Worker (CYW) supporting autistic children, youth, and families with neuro-affirming and relational approaches in a variety of settings, mainly in special education settings and one-on-one counselling settings. Currently, she works as a child therapist at Ripple Effect Children’s Services in Toronto, Ontario and as a Course Director at York University teaching Inclusion, Disabilities, and Education to preservice K to 12 teacher candidates. Her mixed methods doctoral research examined the impact of ABA on the wellbeing of autistic people using survey analyses and stories from lived experiences.

Episode 48. A journey to transform special education: Catching up with Guy Stephens at Alliance Against Seclusion & Restraint

Image courtesy of the Alliance Against Seclusion & Restraint

I was honoured to speak with the amazing Guy Stephens, founder of the Alliance Against Seclusion & Restraint about what’s new in human rights advocacy for autistic &  developmentally disabled students.

AASR has a groundbreaking new program, Reframing Behaviour, in partnership with the Crisis Prevention Institute, rolling out across America–neuroscience-based training for educators to eliminate seclusion & stop the traumatization of our special ed students. 

Listen to the podcast by playing the audio file below, or on streaming sites like  Spotify,   ApplePodcasts,  Pandora, etc

Read the podcast transcript below the audio file.


Transcript: NCP_Transcript_Guy Stephens

Bio
Guy Stephens is one of the best-known parent advocates in our community. Through his work at AASR, he has been helping to inform changes in policy and practice to reduce and eliminate the use of restraint and seclusion in schools and other settings. Guy promotes trauma-informed, neuroscience-aligned, collaborative approaches to working with kids–and in just a few years he’s led AASR to become a leader in the field, presenting their work across North America with groundbreaking education for educators, as well as toolkits for parents. Guy also currently serves on the board of directors for The Arc of Maryland and PDA North America.

Links
Reframing Behaviour: Neuroscience-based Training for Educators

More about the Reframing Behaviour program 

Alliance Against Seclusion & Restraint: Parent Guide

 

 

Episode 46. Dr. Jackie Ryan on inclusive research & service models for intellectually disabled Canadians

I was so excited to speak with Dr. Ryan, a trailblazer in Canadian autism research! Her work was the first participatory autism research in Canada and it has inspired more. We talk about inclusion, autonomy, research methods, our collaborative work and how to improve services for intellectually disabled people in Canada’s west and throughout the world.

Listen to the audio below or on streaming services like Spotify ApplePodcasts & Pandora.
Read the transcript below the audio file.

Transcript coming soon!

Bio
Jackie Ryan is an autistic autism researcher with a PhD in Rehabilitation Science from the University of Alberta. Her recent doctoral research was about understanding self-determination and autonomy from the perspective of autistic adults with intellectual disabilities, using a community-based participatory research approach. Included in her research was the preparation of the Research 101 open-access training to build capacity for autistic people to collaborate more in autism research.

Sources
Being able to be myself: Understanding autonomy and autonomy-support from the perspectives of autistic adults with intellectual disabilities. Ryan, et al. Autism. 2024.

 

 

Episode 44. Filmmakers Tony Spiridakis & Alex Plank on the new film “Ezra”, autism and representation

Tony Spiridakis, Bobby Cannavale & Alex Plank

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 SpotifyApplePodcasts, Pandora, etc 

Read the transcript, below the audio.


Transcript:
Transcript_NCPodcast_Tony Spiridakis & Alex Plank

Bios

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.

 

Episode 43. “If it feels like too much for you, then it’s probably too much for your kid” Talking about parenting with Stephane Hartl

I had such a great conversation with artist and teacher Stephane Hartl about parenting autistic children in a world that wasn’t built for them. How do parents manage a new diagnosis, advocate at school and navigate the transition to adulthood? What needs to shift in our society—and how can we help to shift it?

Listen by playing the audio file below, or on streaming sites like Spotify, Stitcher or ApplePodcasts.

Read the transcript, below the audio.

Transcript coming soon!

Episode 40. Keenan Wellar from LiveWorkPlay: Transforming Canada’s housing & programs for intellectually disabled Canadians

Portrait photo of a woman and man standing together, smiling, against a white wall with the shadows of a tropical plant projected on the wall. The woman has short, light brown hair and a black boatneck shirt with a patch of burgundy on it. The man has salt-and-pepper hair, cut short and is wearing a dress shirt with a small blue and white check pattern.
Julie Kingstone & Keenan Wellar, co-leaders of LiveWorkPlay

I had the honour of speaking with Keenan Wellar, founder of LiveWorkPlay about the organization’s work helping the community welcome and include people with intellectual disabilities, autistic persons, and those with a dual diagnosis in housing, work and leisure.  LiveWorkPlay is a model for the paradigm shift that is needed in developmental services!

Listen to the podcast by playing the audio file below, or on streaming sites like Spotify, Stitcher or ApplePodcasts.


Transcript: Transcript_KeenanWellar_NCP_Podcast

Bio
Keenan Wellar has served as Co-Leader and Director of Communications for charitable organization LiveWorkPlay since 1997. LiveWorkPlay helps the community welcome and include people with intellectual disabilities and autistic persons to live, work, and play as valued citizens. The organization has earned numerous accolades, including Ottawa Board of Trade’s Best Non-Profit of 2019. Keenan serves as LiveWorkPlay event host as well as media spokesperson. He currently appears monthly on the Weekly Roundup show on 580 CFRA talk radio .

Episode 39. “What outcomes are we looking at?” Talking with Dr. Andrew Whitehouse about the shifting course of autism research & services

Portrait photo of a man, light-skinned with short brown hair and rectangular black eyeglasses, in a white dress shirt, smiling, standing in front of bright green bushes dotted with flowers of pink and muted orange. 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.


Transcript:
NoncompliantPodcast_trscrt_Whitehouse

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.

Links
Will Mozart Make My Baby Smart?

Autism-related dietary preferences mediate autism-gut microbiome associations

Cooperative Research Centre for Living with Autism (Autism CRC)

Episode 38. “It’s hard to un-ring the bell”: Talking about the vaccine-autism myth (& more) with Dr. Paul Offit

Portrait photo of a man, light-skinned with grayish hair and wire rimmed, oval glasses, in a blue dress shirt, gazing forward pensivelyI 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.

 

Transcript: Transcript_P_Offit_NCPodcast_11_23

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.

 

Episode 30. 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.

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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

 

Episode 25. “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.
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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.

Episode 21. “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.
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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:

 

Episode 20. 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.

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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).

 

 

Episode 17. “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.

 

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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.

 

Episode 14. “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.

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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/

Episode 12. “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.

 

Episode 10. 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.

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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

Episode 8. 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.


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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

Episode 2: “People have the right to communicate in the method that is best for them, period.” An Interview with D. Burrow

For this episode, I interviewed D. 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).

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Transcribed by Julie Ann Lee: Transcript_Noncompliant_Burrow
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Bio
D. Burrow is an Ottawa-based librarian and freelance writer who is also deeply passionate about tabletop roleplaying games, with 25 years in the hobby. D. 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. D. wrote the latest support documentation for Proloquo2Go and Proloquo4Text. D. 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. D. 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 D. 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