Episode 50. Remembering Steve Silberman: A conversation with Shannon Rosa

Me and Steve

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.

Listen by pressing play below, or find it on streaming sites like  Spotify,   ApplePodcasts,  Pandora, etc.

Transcripts below audio file.


Transcript: Transcript- Noncompliant Podcast-Remembering Steve Silberman A conversation with Shannon Rosa (1).mp3(2)

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.

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 47. Challenging the ABA industry: Julie Roberts of Therapist Neurodiversity Collective

In this episode we spoke with Julie Roberts, the founder of the Therapist Neurodiversity Collective. We discussed her new book, The Gold Standard Fallacy, a critique of the ABA industry, as well as new and better approaches to autism services.

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

Read
 the transcript, below the audio.


Transcript by Julie-Ann Lee: JRoberts_Transcript_NoncompliantPodcast_

Bio
Julie Roberts, M.S., CCC-SLP, Julie Roberts, M.S., CCC-SLP, founded the Therapist Neurodiversity Collective in 2018. She is  the author of The Gold Standard Fallacy of ABA: A Reference Guide for Therapists, Educators, & Parents. She is a formally late-identified Autistic Speech-Language Pathologist (SLP) specializing in neurodiversity-paradigm-aligned approaches to therapy and education, particularly in autistic social communication.

Sources
The Shifting Landscape of Autism Services, 2023 interview with Julie Roberts on this podcast
Therapist Neurodiversity Collective
The Gold Standard Fallacy of ABA
Autism in Adulthood
Neurodiversity (Sage Journals)

 

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 45. Willowbrook, whistleblowers & human rights: Carl Elliott on his new book, The Occasional Human Sacrifice

Professor Carl Elliott’s new book The Occasional Human Sacrifice, is about whistleblowers in medicine. In this episode, we discuss the whistleblowers at Willowbrook, a residential institution for autistic and developmentally disabled people that was exposed for human rights abuses in 1972. We also talk about the experience of being a whistleblower and its impact on mental health, as well as strategies for reporters and whistleblowers.

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

Read the transcript, below the audio.

 

Cw for institution survivors: Abuses in residential institutions discussed at 5:30-11:05 and 32:45-37:03

Transcript: Transcript_Carl Elliott_Noncompliant Podcast

Bio
Carl Elliott is a professor in the Department of Philosophy at the University of Minnesota. He’s a native of Clover, South Carolina, where his father was a family doctor and his mother was a librarian. Before moving to Minnesota, he taught at McGill University in Montreal. Among the awards he has received for his work are a Guggenheim Fellowship, a National Endowment for the Humanities Public Scholar Award, and the Maguire Chair in Ethics and American History at the US Library of Congress.

Resources
The Occasional Human Sacrifice: Medical Experimentation and the Price of Saying No, by Carl Elliott (W W Norton)

Former residents of Willowbrook recall its horrors as fight for disability rights continues. Times Union. March 27, 2023.

Willowbrook State School. Wikipedia.

Stop the Shock at Judge Rotenberg Center: Action Alerts. Autistic Self Advocacy Network (US).

 

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 42. “How do we break down the barriers?” Anne Borden King, interviewed by Sean Pickard on Voices for Abilities

While the podcast is on a brief hiatus as I finish my book (yay!), I’m sharing this interview that Shawn Pickard hosted with me for Voices for Abilities radio. We discussed how Canadian autism policy needs to move from a charity perspective to a rights perspective and how the inclusion and neurodiversity movements are working for the changes that autistic people & families need.

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

 

Bio
Anne Borden King is a Toronto-based podcaster, writer and human rights advocate. Her work has appeared in the New York Times, Healthy Debate, FactKeepers and Thinking Person’s Guide to Autism, among other publications. She is the host of Noncompliant, a popular podcast about neurodiversity. A co-founder of Autistics for Autistics, the Canadian autistic self-advocacy organization, she has presented before the United Nations and the Canadian Senate among others, on autism policy.

Her upcoming book, The Children Do Not Consent: The search for autism’s “cure”—and the kids who pay the cost will be published in 2023.

 

 

 

 

Episode 41. The impact of pandemic-related school closures: A conversation with Molly Colvin & Tannahill Glen

 I spoke with Dr. Molly Colvin and Dr. Tannahill Glen about their new book, Altered Trajectories: How the COVID-19 Pandemic Impacted Children’s Education, Mental Health and Neurodevelopment, co-authored with Dr. Jennifer Linton Reesman. We discussed the educational impact of school closures, as well as the mental health impact on kids. A crucial topic as we look for solutions today, both within and outside education.

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


Bios

Dr. Molly Colvin is director of the Learning and Emotional Assessment Program (LEAP) at Massachusetts General Hospital and an Assistant Professor of Psychology at Harvard Medical School. She is also Co-Director of the Child Psychology Internship program at MGH.

Dr. Tannahill Glen is a clinical neuropsychologist at the MD Anderson Cancer Center. She specializes in diagnosis and treatment planning for neurologic conditions with impact on thinking, mood and behavior.  Most recently her publications have centered on the neuropsychological consequences of prolonged pandemic related educational disruption.

Resources

My interview with Jennifer Reesman: Middle-school minds in teenage bodies: The post-pandemic crisis in our high schools. Healthy Debate. November 2023.

 

 

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 35. What happened to social psychiatry? A conversation with Professor Matthew Smith

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In this episode, I spoke with health historian Matthew Smith from the University of Strathclyde. We discussed his new book, The First Resort: The History of Social Psychiatry in the United States, as well as neurodiversity, the promise of Universal Basic Income and more.

 

Listen to the podcast on the audio link below or on streaming sites like Spotify, Stitcher or iTunes.

Read the transcript below the audio link.

 

Transcript by Julie-Ann Lee: Transcript_NoncompliantPodcast_Matthew Smith_2023

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).

Episode 34. “Compliance is the wrong goal…we need connection and compassion”: Guy Stephens & Chantelle Hyde from the Alliance Against Seclusion and Restraint

I spoke with Guy Stephens, executive director of the Alliance Against Seclusion and Restraint (AASR) and Chantelle Hyde, lead Canadian Volunteer with The Alliance Against Restraint and Seclusion and co-founder of the Canadian Coalition Against Seclusion and Restraint in Schools, founded early in 2023. We discussed the high prevalence of the use of seclusion rooms (isolation rooms) and restraints on students with disabilities and the need for policy action to protect their human rights.

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 by Julie-Ann Lee: Transcript_Noncompliant_Podcast_GuyStephens_ChantelleHyde

A man with a brown and gray beard and short hair, in a black shirt, smiling, with a blue sky and clouds in the background.
Guy Stephens is the founder and executive director of the Alliance 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.

A woman with long brown hair and bangs in a denim coat, seated, looking at the camera and smiling, hugging her preschool-aged daughter, with long brown hair in a denim coat, who's looking at her mom and smiling.

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 being featured on W5, an investigative series on Canada’s CTV News, in their investigative report on seclusion and restraint. She is also co-founder of the Canadian Coalition Against Seclusion and Restraint in Schools.

Links cited:

Needed Change: Moving away from restraint and seclusion

 

Episode 33. The shifting landscape of autism services: Therapist Neurodiversity Collective’s Julie Roberts

A woman with long blond hair, smiling, against a white backdrop Today I spoke with Julie Roberts, founder of Therapist 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.

Read the transcript below the audio link.

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Transcript by Julie-Ann Lee: Transcript_NoncompliantPodcast_JulieRoberts

Bio
Julie Roberts, a formally late-identified Autistic woman, is a Speech-Language Pathologist, neurodiversity educator and activist who founded Therapist Neurodiversity Collective in 2018 and Public School Neurodiversity Collective in 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.

Episode 31. Talking with professor Alan Levinovitz about pseudoscience and the myth of “natural”

Today I spoke with Professor Alan Levinovitz, author of Natural: How Faith in Nature’s Goodness Leads to Harmful Fads, Unjust Laws, and Flawed Science. We talked about the myth of the natural, pseudoscience, neurodiversity and post-pandemic life.

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

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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.  

Link
Natural: How Faith in Nature’s Goodness Leads to Harmful Fads, Unjust Laws, and Flawed Science.

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 29. 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

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 

Episode 27. 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.

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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.

Episode 24. “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.
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Transcript by Julie-Ann Lee: Transcript_Haley_Moss_NC_Podcast_0821
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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.)

Episode 23. 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.

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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

Episode 22. “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.
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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
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Listen to CripChat UK on Podbean here. Great guests and discussions every week!

 

 

Episode 15. “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.

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 11. “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.

 

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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.

Episode 4. “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.

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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.

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