Category: Podcast

“Punishments and rewards can get one thing, under certain conditions – temporary compliance” Interview with Alfie Kohn

~ a4aontario

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/

“Neurodivergent individuals challenge society to question exactly what normalcy is, if it even exists to begin with” –Interview with Gaby from A4A

~ a4aontario

In this podcast, Gaby and I discussed racism in the education system, the disability hierarchy, media bias and representations of the self-advocacy movement, eye contact and cultural norms, the power of social media, the situation in Ontario and more!

Listen to the podcast at the audio link below. Listen to this episode on Stitcher here
& on iTunes here.


Transcript, by Julie Ann Lee: Transcript_Gaby_Noncompliant

Bio: Gaby received her BA in Biological Anthropology from the University of Toronto. In addition to contributing to the critically-acclaimed anthology “All The Weight of our Dreams: On Living Racialized Autism,” Gaby is one of the founding members of Autistics for Autistics Ontario, the first provincial autistic self-advocacy group in Ontario and an international affiliate of the Autistic Self Advocacy Network.

Her work includes programs to educate health providers on autistic patient experiences and needs, employment accessibility outreach and communications with the governments of Ontario and Canada to reform autism policy. In addition to being diagnosed autistic in early adulthood, she also holds other identities such as being multiply neurodivergent and the first in her family to attend university in Canada.

The Episode: In this podcast, Gaby and I talk about racism, ableism and the overlapping oppressions faced by her family as newcomers to Canada in dealing with schools, the autism services system and higher education. Despite the Government of Canada’s official rhetoric about diversity, Canadian schools and service organizations continue to marginalize newcomers, failing at effective outreach for services, discouraging children from speaking their language of origin and operating community services without meaningful inclusion of people of Colour. Students of Colour are still targeted disproportionately for disciplinary actions and overtly or tacitly streamed out of the path to higher education.

“The social workers, the City workers, anyone behind the front desk did not look like me—or like any other resident in the community they were supposed to be serving.”

While positive models exist in other jurisdictions (supported decision-making, the money-follows-the-person model, independent supported living, school inclusion) somehow Ontario’s system isn’t yet being reformed in any meaningful way. This episode is very connected to what’s happening here—and also part a much longer, on-going discussion within disability rights and autistic self-advocacy towards addressing bias within our own organizations. We have a lot of work ahead of us.

Resources
All the Weight of Our Dreams explores intersectional oppression and realities for autistics of Colour, and it is a must-read, in a world that is too often white-washed and centred on an imagined norm (neurotypicality). Ordering info below:

All The Weight of Our Dreams: On Living Racialized Autism
Autism and Safety, a report by ASAN on police bias against racialized and autistic Americans
The Autism Wars, blog by Kerima Cevik
Autistic Hoya, Webpage by Lydia X.Z. Brown
The Autistic Self Advocacy Network (US)
Autistic, Trans and Latinx: My Survival is our Community’s Survival Against Gentrification by Ruby Herida Eterna De Amor
Black, Female and Autistic: Hiding in Plain Sight, Interview with Moreniki GIwa Onaiwu by Matthew Rozsa
What Does a Black Autistic Man Look Like? A personal essay by N.I. NIcholson
What it Feels like to be an Autistic Person of Colour in the eyes of the Police, by Eric Garcia

“We need much better standards of research in autism intervention”: An interview with Dr. Damian Milton

~ a4aontario

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.

 

“Creating a home environment that works for everybody”: Interview with Shannon Rosa

~ a4aontario

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.

Trauma-informed Mindfulness, Teaching & Care: Interview with Dr Sam Himelstein

~ a4aontario

sam photo

I recently talked with Sam Himelstein, the president of the Center for Adolescent Studies , about the pitfalls of pop-culture “mindfulness” and the importance of trauma-informed care. We also talked about the problems with behaviourist approaches that focus only on measuring outcomes for compliance rather than quality of life.

Listen to the podcast on audio link below, or  on Stitcher here or on iTunes here.

Read the transcript, below the audio file.

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Transcript, by Julie Ann Lee: Himelstein_transcript-Noncompliant

Bio
Sam Himelstein, Ph.D., is a Licensed Psychologist specializing in working with juvenile justice-involved youth, addiction, and trauma. He travels the country speaking at conferences and conducting professional trainings and is the president of the Center for Adolescent Studies.  His mission is to help young people become aware of the power of self-awareness and transformation, and train professionals with similar interests.

Links
The Centre for Adolescent Studies

“Why don’t we work autistic people into inherently fantastic scenarios like a space opera or a globetrotting adventure story?” Interview with comedian Michael McCreary

~ a4aontario

McCreary picI interviewed 23-year-old comedian Michael McCreary about media portrayals, comedy & so much more!

Listen to the audio link below or on Stitcher here
or on iTunes here.

Read the transcript,  below the audio file.

 

Transcript by Julie Ann Lee: Transcript_McCreary_Noncompliant

Bio
Michael began stand-up comedy at the age of 13. He has performed stand-up shows, keynote addresses and panel presentations across Canada and the US. He just published the book entitled “Funny, You Don’t Look Autistic” and recently delivered a TEDx Talk on the topic of autism acceptance. He has also consulted on the television show “Ransom” to ensure authenticity of an autistic character and has appeared on CBC television and radio.

Links mentioned in the podcast
Michael’s book: Funny, You Don’t Look Autistic
Canadian Down Syndrome Society: “Anything But Sorry” video
Pablo show: Pablo-Official YouTube channel
Michael’s Facebook page

 

 

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

~ a4aontario

Oswin Latimer-1Today’s guest is Oswin Latimer, co-founder of Foundations for Divergent Minds, a framework designed by autistic and neurodivergent people for use by families and professionals. FDM works on the principle that when a child struggles it is because their surroundings need to be adjusted–and assessment should find what is missing from their environment. FDM is a portable, affordable approach that is based on equity and access –and in the short time since its launch, it has disrupted the autism services market in a brilliant way, as we discuss in the podcast!

Listen to the full podcast at the audio link below or on Stitcher here or on iTunes here

Read the transcript, below the audio link.


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Transcript by Julie Ann Lee: Transcribed_Noncompliant_Oswin_Latimer

Bio
Oswin Latimer is an indigenous, non-binary, Autistic adult, parent to 3 neurodivergent children and a disability advocate. Oswin is a founder of Foundations For Divergent Minds, which we will focus on in this episode. Prior to founding Foundations for Divergent Minds, Oswin was Director of Community Engagement with the Autistic Self Advocacy Network (ASAN) and in addition to activist and education projects there, they represented the autistic community to policymakers in the US Departments of Labor,  Education, Personnel Management and others.

After leaving ASAN, Oswin spent several years as a disability consultant, advising parents on ways to set up their homes and create individualized education plans that better met their child’s needs. They also compiled and edited Navigating College: A Handbook on Self Advocacy Written for Autistic Students from Autistic Adults, among other projects.

Link:
Foundations for Divergent Minds

“We don’t even need to reinvent the wheel: the wheel’s there”: Interview with Cal Montgomery

~ a4aontario

Cal photo

I spoke with human rights activist Cal Montgomery, a survivor of residential institutions and, after institutionalization. Cal describes how the institutional model is replicated in group home settings, even when they have a veneer of independent living. As he observes: “It’s really not that hard to take a program that looks like it supports self-determination and make it all about control. And we see it done every day.”

We talked about the Judge Rotenberg Centre (JRC), a residential institution that has been using shock torture on autistic and IDD residents. Despite some of the difficult subject matter of this podcast, I walked away with a feeling of hope, the kind of hope that is given by shedding a light on truth–one of the many gifts that Cal brings to the movement.

Listen to the podcast at the audio link below or on Stitcher here
or on iTunes here

Read the transcript, below the audio file.

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EPISODE TRANSCRIPT: Cal_Montgomery_Noncompliant_transcript

Bio
Cal Montgomery is a trans, queer, autistic, physically disabled activist and writer in the United States and a survivor of long-term institutionalization. He is a Director of the Board at the Autistic Self Advocacy Network, engages in direct actions and civil disobedience around disability rights issues and is a former member of ADAPT, the US direct-action organization.

Cal is at the forefront of action against the electric shock aversives used at the Judge Rotenberg Center in Massachusetts, which we talk about in the podcast. Cal is probably best known in the neurodiversity community for his essay “Critic of the Dawn”. In it, he writes: “Disability is injustice, not tragedy; unequal treatment, not inherent inequality.” I highly recommend you check out that essay as well as following Cal’s blog, Watch Well: A Blog about Disability.

Links and Sources:
Critic of the Dawn, an essay by Cal Montgomery
Cal’s Blog, Watch Well: A Blog About Disability
Missing Pieces, by Irving Kinsola

“It models how to relate, in a way that’s not overwhelming and respects autonomy” Interview with autistic mentor Raya Shields

~ a4aontario

Podcast
Listen to the podcast at the audio link below or on Stitcher here or on iTunes here

Read the transcript, below the audio file.

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Transcribed by Julie Ann Lee:  Transcript_Noncompliant_Shields

Bio
Raya Shields just received her Master’s Degree from York University (Toronto) in the school of Critical Disability Studies. Her master’s thesis focuses on human rights abuses at the Judge Rotenberg Centre. She is autistic, multiply neurodivergent, and queer. For the last 12 years she has been mentoring autistic children and youth. She is currently working on a series of children’s books.

The episode
Raya and I talked mainly about her experiences as an autistic mentor. She described what the time spent with her mentees looks like: what they do, how they plan and what comes out of the experience for the youth and for their families. I hope you enjoy this podcast as much as I did. Lots of great ideas and inspiration as we move towards inclusion in our society.

 

“Window-watching Wendy” and the history of ADHD: An Interview with Matthew Smith

~ a4aontario ~ 1 Comment

17-103_Matthew Smith_6904 copy

I had an amazing conversation with University of Strathclyde professor Matthew Smithabout the trajectory of the ADHD diagnosis in the last half of the 20th century and shifts in child psychology as well as Ritalin marketing and sales.

We discussed the impact of society’s responses to ADHD in kids, as well as the problem of teaching to the test and the current use of ADHD drugs for performance-enhancement or as an “easy fix” replacement for meaningful inclusion. I also asked Matt about an innovative new pilot approach to schooling in Musselburgh, Scotland, where many children had been receiving the ADHD diagnosis. 

Listen to the podcast here at the audio file below or on Stitcher here,  on iTunes here

Read the transcript at the link below the audio file.

 

 

 

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Transcript by Julie Ann Lee: Transcript_Matthew_Smith_Noncompliant

Bio
Matthew Smith is Professor of Health History within the Centre for the Social History of Healthcare. He is Vice Dean Research for the Faculty of Humanities and Social Sciences at the University of Strathclyde. He has written many books about the history of medicine, including two about ADHD and Another Person’s Poison: A History of Food Allergy –as well as co-editing the 2016 collection: Deinstitutionalisation and After: Post-War Psychiatry in the Western World (2016).

Links
Professor Smith’s blog on Psychology Today

Professor Smith’s book, Hyperactive, The Controversial History of ADHD

Hyperactive Child, song and lyrics

New York Times series about ADHD drugs in America

 

 

 

 

“It’s scamming parents–and through that the children are suffering”: Interview with Emma Dalmayne

~ a4aontario

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.

Eating in the 4th Dimension: Interview with Alan Levinovitz

~ a4aontario

alan photo
I had a great conversation with Alan Levinovitz about how the desire for empowering rituals around food can be twisted by marketers to sell a product or a plan, such as the GAPS, DAN or MAPS diets. We talked about the negative impact of restrictive diets on individuals, the problem with proxy consent and more. Alan also discussed food restrictions within the framework of world religions and the commodification of rituals: incredibly interesting!

Listen to the episode by clicking the audio link below, on Stitcher here on iTunes here.
Read the transcript below the audio.

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Transcript by Julie Ann Lee: transcript_Noncompliant_Alan_Levinovitz

Bio
Professor Alan Levinovitz is an associate professor of religious studies at James Madison University. He specializes in classical Chinese philosophy and the relationship between religion and science. In addition to scholarly articles, he is the author of The Gluten Lie: And Other Myths about What You Eat –and The Limits of Religious Tolerance. He has also appeared on the Netflix series A User’s Guide to Cheating Death.

Links
Interview with Alan Levinovitz

The Gluten Lie

 

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

~ a4aontario ~ 1 Comment

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

“Neurodiversity is not an opinion. It’s a living fact” : Interview with Steve Silberman

~ a4aontario
stevesilberman-005-1
Steve Silberman

 
I was thrilled to speak with Steve Silberman, author of the seminal history of the autism diagnosis and the neurodiversity movement, Neurotribes!

Listen to the episode by clicking the audio link below or on Stitcher here,  iTunes here

Read the transcript below the audio file.


Transcribed by Julie Ann Lee: Transcript_ SteveSilberman-Noncompliant
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Bio
Steve Silberman is an award-winning science writer whose articles have appeared in Wired, The New York Times, The New Yorker, and many other publications. His book NeuroTribes became a widely-praised bestseller, winning the 2015 Samuel Johnson prize for non-fiction and was chosen as one of the Best Books of 2015 by The New York Times, The Economist, The Independent and many others. His TED talk, “The Forgotten History of Autism,” has been viewed more than a million times and translated into 35 languages. He lives with his husband Keith in San Francisco, where he is working on a new book, The Taste of Salt (discussed in this podcast).

The impact of Neurotribes
Neurotribes really changed the public conversation about autism in some radical ways. It meticulously traces the history of the autism diagnosis, synthesizing a forgotten history of the residential institution era, while also giving detail and context to competing notions of the diagnosis in the medical literature across time (and the impact of that competition). The book traces shifting understandings of autism in society, explaining how medicine, culture and grassroots activism came together for both a rise in diagnosis and new understandings about autism and neurodiversity.  Neurotribes creates a context for what we see today: how our social institutions and media interpret, respond and portray autism. 

Since writing Neurotribes, Steve continues to speak and write about autism, but always with a mind to refer to “the real experts”: autistic people. We talked about this, as well as his new book project; neurodiversity; autistic history; platforms of communication; states of being; the rise of false news and our need for honesty; inspiring new youth movements; and the power of continuing the work of social justice when we have no choice but to carry on.

Links from the podcast:
Greta Thunberg: Profile

Dara McAnulty’s blog

Interview with Steve Silberman: The Sun Magazine

Steve Silberman’s TED Talk: The Forgotten History of Autism

Steve Silberman’s webpage