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

~ a4aontario

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)

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

~ a4aontario

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.

 

Coping with Covid anxiety in a post-pandemic world: A conversation with Dr. Lucy McBride

~ a4aontario

A smiling, light- skinned woman with dark hair pulled back in a ponytail, sitting on a bench in a park with green trees and sunlit grass, wearing an orange shirt and a white doctor's coat with a blue stethoscope slung over her shoulder. 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.

Talking about neurodiversity, monotropism & more with Scottish activist Fergus Murray

~ a4aontario

I had an amazing conversation with Fergus Murray, a Scottish science educator, writer, autistic advocate and author of the Monotropism.org website.

We talked about the concept of monotropism, which was co-founded by Murray’s late mother, Dr. Dinah Murray, as well as Fergus’s experiences growing up in a neurodivergent household and the joys of Autscape! We also discussed the problems of the Spectrum 10k project and aspie supremacy, the future of neurodiversity and the importance of being weird.

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

Read the transcript below the audio file.

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Transcript by Julie-Ann Lee: Noncompliant_transcript_Fergus Murray

Bio
Fergus Murray is an autistic science teacher, writer and community organiser–a co-founder, and the current chair, of AMASE (Autistic Mutual Aid Society Edinburgh). Fergus’s mom, Dinah Murray, was a pioneering autistic researcher and activist as well as co-creator of the theory of Monotropism. Fergus has authored the website monotropism.org and  is the founder of weirdpride.day. They also create slow-motion videos of water, and giant puppets.

Links
http://oolong.co.uk
monotropism.org
weirdpride.day
Autscape
We need to talk about aspie supremacists

 

 

 

“A Catalyst for Activism”: Talking with Finn Gardiner from the Autistic People of Color Fund

~ a4aontario

 I had a fascinating conversation with Finn Gardiner, Director of Policy & Advocacy for the Autistic People of Color Fund about 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.

Read the transcript below the audio file

 

Transcript by Julie-Ann Lee:  Transcript_Noncompliant_podcast_Finn_Gardiner

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.

Links
Autistic People of Color Fund
Donate to the Autistic People of Color Fund

 

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

~ a4aontario

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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).

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

~ a4aontario

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

 

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

~ a4aontario

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.

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

~ a4aontario ~ 1 Comment

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.

The Genesis 2 “bleach cult,” past and present : A conversation with pseudoscience de-bunker Melissa Eaton

~ a4aontario

“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

 

Inclusive learning spaces for neurodivergent teens: Passages Centre founder Kristina House

~ a4aontario
Kristina House

I had such an inspiring conversation with Kristina House, who’s co-founded Passages, an experimental hybrid learning space for neurodivergent students and other students, in Toronto!

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

Read the transcript below audio link.

 

Transcript, by Julie Ann Lee: Transcript_Noncompliantpodcast_K_House

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 of Passages, 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.

Link
Passages Centre

The power of international neurodivergent collaborations: AutCollab’s Jorn Bettin

~ a4aontario
Jorn Bettin

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.

Read the transcript below audio link.


Transcript: Noncompliant_podcast_transcript_Jorn_Bettin

Bio
Jorn Bettin is an Autistic anthropologist by birth and a knowledge archaeologist by autodidactic training. He has a background in mathematics, and enjoys working closely with domain experts in transdisciplinary contexts. His current work focuses on the co-design of new community-oriented and patient centric models of care. Jorn has co-authored several books on creative collaboration and model driven product line engineering. He is a trustee of the Autistic Collaboration Trust – a global mutual support hub for neurodivergent individuals and ventures. He is also part of the Design Justice Network, regularly working with those who are most adversely affected by design decisions — about healthcare service delivery, new technologies, and the planning of communities.

Links
Autcollab website

Design Justice website

Book: The Beauty of Collaboration at Human Scale by Jorn Bettin

Evolutionary design

Autcollab projects

Neurodiventures

Understanding Human Collective Behaviour

Talking about Covid, monkeypox, health disinfo & “the 2022 effect” with virologist Alex Greninger

~ a4aontario ~ 1 Comment
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 

Is there an Autism Industrial Complex? Interview with Professor Alicia Broderick

~ a4aontario

front cover of a book. Dark blue cover with words "THE AUTISM INDUSTRIAL COMPLEX: HOW BRANDING, MARKETING & CAPITAL INVESTMENT TURNED AUTISM INTO BIG BUSINESS  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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Transcript by Julie-Ann Lee: Podcast_Transcript_0722_Broderick_Borden

Bio
Alicia Broderick is a Professor of Education at Montclair State University in New Jersey.

Links mentioned in the podcast

The Autism Industrial Complex:  How Branding, Marketing, and Capital Investment Turned Autism Into Big Business, by Alicia Broderick

Screams, Slaps and Love (Lovaas interviewed in Life Magazine).

Affirming resources for families

Start Here: A Guide for Parents of Autistic Kids, by the Autistic Self Advocacy Network (book & e-book)

Thinking Person’s Guide to Autism (website)

Uniquely Human, by Barry Prizant (book)

Neurotribes, by Steve Silberman (book

Neurodiversity Libraries, activism & community-building: Interview with Lei Wiley Mydske

~ a4aontario
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.

Algorithms and Outrage: Talking social media with Charles Arthur, author of Social Warming

~ a4aontario

In this episode, I interview Charles Arthur, the author of Social Warming: the dangerous and polarising effects of social media. We discuss the history of social media and current problems with social media, particularly disinformation on a global scale, as well as what we can do to combat this crisis.

Listen to the podcast via the audio file below, or on Spotify, Stitcher or iTunes here.

Read the transcript in the link below the audio file.
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Transcript by Julie-Ann Lee: Transcript_CharlesArthur_NCPodcast

Bio
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.

“The most effective way to stop it is public pressure”: Talking about Spectrum10K with Irish autistic activist Ryan Hendry

~ a4aontario
Ryan Hendry

The Noncompliant podcast came out of hiatus this week to talk with autistic advocate Ryan Hendry about Spectrum10K, a currently-proposed project by UK business interests to collect DNA data on autistic children and adults for a database to sell to companies for commercial ventures. Ryan and I discussed the ethical implications of the project and others like it. We also talked about activism being welcoming to new members of the community.

Listen to the podcast via the audio file below, or on Spotify, Stitcher or iTunes here.

Read the transcript at the link below the audio file.
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Transcript by Julie-Ann Lee: Ryan Hendry Transcript_Noncompliant Podcast

Bio
Ryan is a 27 year old Autistic and ADHD advocate from Carrick fergus, Northern Ireland. Whilst Ryan’s advocacy covers a wide range of topics relating to Autism and ADHD, he is particularly focused upon the issues that Autistic People face when finding employment, as well as issues that particularly affect young people between the ages of 16-21.

Reference
Liam O’Dell’s coverage of the Spectrum 10K papers

“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

~ a4aontario

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.

“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

~ a4aontario
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.)

On conflicts of interest in autism research: Interview with Kristen Bottema-Beutel and Micheal Sandbank

~ a4aontario ~ 1 Comment

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

“Co-Regulation is Key”: A Conversation with Occupational Therapist Greg Santucci

~ a4aontario

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

“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”

~ a4aontario

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:

 

The role of private equity and lobbying in ABA funding: Talking with investigative journalist John Summers

~ a4aontario
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).

 

 

“Often, autistic people are seen as inspiring for overcoming ‘autism,’ not for overcoming the obstacles that the world puts around them”: Interview with journalist Eric Garcia

~ a4aontario
photo of a Latino man with black hair and brown eyes, wearing a white shirt, red tie and black suitjacket, seated at a brown wood table with his arms folded in front of him and colourful photos on the wall behind him.
Eric Garcia

I had a really interesting conversation with journalist Eric Garcia about his upcoming book, We’re Not Broken, which focuses on the social and policy gaps that exist in supporting autistic people.

We talked about the current policy landscape, media bias and the challenges and recent triumphs of the autistic rights movement.

Listen to the podcast here by clicking the audio link below –or on Stitcher here or on iTunes here  (Transcript below audio)

Transcription by Julie Ann Lee: Transcript_Noncompliant_Eric_Garcia
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Bio
Eric Garcia is a journalist based in Washington, D.C. His first book We’re Not Broken: Changing the Autism Conversation is coming out in August 2021. Eric previously worked at The Washington Post, The Hill, Roll Call, National Journal and MarketWatch. His new book uses his life as a springboard to discuss the social and policy gaps that exist in supporting autistic people. It looks at politics; education; employment; independent living; relationships/sexuality; gender; race and the future of the neurodiversity movement.

My published work/interviews, 2020

~ a4aontario

If you’re interested in what I’ve been writing outside of this podcast, check out the links below! Also selected interviews.

Articles

Thinking Person’s Guide to Autism. March, 2020. The power of autistic mentorship.

New York Times, April 2020: Trump Suggested ‘Injecting’ Disinfectant to Cure Coronavirus? We’re Not Surprised

Autistics for Autistics, April 2020 (co-authored with Raya Shields): We are heroes: A plain-language guide about Covid

New York Times, July 2020: I have cancer: Now my Facebook feed is full of “alternative care” ads

Thinking Person’s Guide to Autism, July 2020: Autistic with Cancer: Six Tips for Navigating the Medical System

Healthy Debate, September 2020: It took moms to hack the Covid quacks

Healthy Debate, October 2020: I’ve got cancer. Will I get the health care I need during a pandemic

Healthy Debate, November 2020: Autism case highlights urgent need to reform Ontario’s regulatory colleges

Autistics for Autistics, December 2020: 2020 has not been a good year for ABA: A research review

Interviewed on podcasts

Body of Evidence (o/p October 2019, w/Melissa Eaton & Amanda Seigler): Campaign Against Phony Autism Cures

The Avalanche, April, 2020: Autism, Disability and Access in the Times of Covid