“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.

“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:

 

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).

 

 

Disrupting the Autism Services Market: Interview with Foundations for Divergent Minds founder Oswin Latimer

Oswin Latimer-1
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.

About This Episode
The Foundations for Divergent Minds model, which Oswin co-founded, is a framework designed by autistic and neurodivergent people for use by families and professionals working with autistic and neurodivergent children. Based on Neurodiversity, 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. It focuses on areas including: Sensory Integration; Executive Function; Communication; Social Interaction; and Emotional Regulation.

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!

Thanks again, Oswin, for an inspiring interview.

Link:
Foundations for Divergent Minds

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

For this episode, I interviewed Derek 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
Derek Burrow is an Ottawa-based librarian and freelance writer who is also deeply passionate about tabletop roleplaying games, with 25 years in the hobby. Derek uses augmentative communication, also known as AAC (specifically Proloquo4Text and Proloquo2Go) to communicate, and is  exploring how augmentative communication can be normalized within society and also incorporated into tabletop gaming. Derek wrote the latest support documentation for Proloquo2Go and Proloquo4Text. He is also involved in Autistics for Autistics, the Canadian autistic self-advocacy organization and as a consultant on accessible materials and services in Ontario.

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. Derek and I talked about various aspects of AAC and his experiences before and after getting access to AAC, as well as AAC in tabletop roleplaying (RPGs).

We also talked about the social applications of the RPG model. As Derek said: “Everyone has strengths and weaknesses and in any group of people, someone is going to have a skill that no one else possesses. In gaming, we design characters around their strengths and the world is set forth in such a way as to let them succeed through them. That’s a far better model than real life where we are often put in places that attack our weaknesses and are expected to excel.” The best aspects of the RPG community are a model for our broader culture in creatively cultivating co-operation, valuing diversity and ensuring accessibility.

Because this was one of my first interviews, I was a bit nervous on the mic! But it was a great way to start off the podcast. I hope you enjoy it as much as I did.

Links from the conversation:
Deej, the movie

AAC right-to-access, legal cases

More about AAC