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

Kohn photoThis 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.

Listen to the podcast at the link below. Links to the podcast on iTunes and Stitcher at the end of this post.


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.

The episode: Alfie and I had a fascinating conversation about social control and children’s rights. We also spoke at length about behaviourism/ABA. “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.”

So much more insight, as well as interesting discussions of research and the path forward, in this podcast. Definitely listen to the end!

Links from the conversation:
Alfie Kohn’s website: https://www.alfiekohn.org/

Listen to this episode on Stitcher here
Listen to this episode on iTunes here

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

shannonI had a fascinating conversation with Shannon Rosa about parenting, autism pseudoscience and autistic acceptance. Wow! Have a listen to the podcast below.  iTunes and Stitcher links are at the end of this post.

NOTE: Transcripts of this interview will be available by Dec 20th 🙂


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.

The episode: Shannon and I talked about the impact of class and consumerism on parenting, AAC, shifting autism research priorities, the ideologies behind antivax and cure culture, the “epidemic” myth, inclusion and universal design–and so much more. Our conversation, which wandered between the personal and the political, circled back to the core message of the Thinking Person’s Guide to Autism book and blog. As Shannon put it: “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.”

Listen to this episode on Stitcher here
Listen to this episode on iTunes here

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

sam photo

For this episide, I interviewed Sam Himelstein, the president of the Center for Adolescent Studieabout mindfulness, the pitfalls of pop-culture “mindfulness” and the importance of trauma-informed care in his work with youth.

Listen to the podcast below. (iTunes and Stitcher links are at the end of this post.)


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.

The episode
It was inspiring to hear Sam talk about working with at-risk and incarcerated youth, about “rolling with resistance” rather than top-down authority; building trust; trauma-informed care; mindful walking and the importance of bilateral stimulation (what we call stimming); individual strategies for fostering interpersonal safety; and also about the “mindfulness” fad and how to change the problematic dynamics around it.

Sam’s compassion and understanding about how kids feel comes in part from having been through the system himself. He knows that for anyone working with kids, especially at-risk kids, the first priority is building an authentic relationship with them to truly help improve their life outcomes and get them out of the school-to-prison pipeline. He is breaking new ground in his approach, especially around empowerment and rethinking some long-held beliefs about authority.

“Most of young people’s lives are getting told what to do and what not to do as adults,” Sam points out. We discussed ways that kids can be put into the driver’s seat, to feel empowered, safe and respected.

We also talked about the problems with behaviourist approaches that focus on measuring outcomes—which is the core of Applied Behaviour Analytics and is also a trend in many mainstream classrooms (thanks in no small part to Common Core). Sam says: “The present day paradigm in therapy, the post-positivist view in the field of education really focuses on outcomes, a small slice of outcomes, which is behavioural outcomes. …You see a lot of wanting to reduce behavioural symptoms but not as much wanting to increase other subjective outcomes that lead to greater life success.”

This type of measurement also links in with pop-culture mindfulness, especially when it is viewed as a magic-button for classroom control. Mindfulness, Sam reminds us, isn’t a disciplinary tool. It isn’t a quick-fix and shouldn’t be co-opted as a tool of social control. When used in that way, it can actually harm; as in the case when mindfulness is  not trauma-informed. Our podcast ended with talking about what it means to have trauma-informed practice, a topic of Sam’s most recent book, which just came out this month!

A lingering question, which I don’t think anyone has yet answered, is what an autistic-informed-and-led mindfulness could look like. Another very crucial question: what is the impact of existing forms of mindfulness training on autistic youth? How does mindfulness manifest differently, depending on neurotype? In seeking some answers, we can look towards the work of Damian Milton about “flow state,” which we will be discussing in the next episode.

Links:
The Centre for Adolescent Studies

Listen to this episode on Stitcher here
Listen to this episode on iTunes here

“Regulatory bodies should not be hiding behind CAM policies” Interview with Dr. Philippe Chouinard

Philippe
It was an honour to speak with Dr. Philippe Chouinard. Dr. Chouinard is a leader in the global movement against autism pseudoscience and a fierce protector of children’s rights to health and safety.

Listen to the podcast below. iTunes and Stitcher links are at the end of this post.


Bio

Dr. Philippe Chouinard is a family physician based out of Moncton New Brunswick. He has been involved in a developmental paediatrics practice with a specialization in ADHD & autistic populations since 2010. His work has led him to take a strong stance against pseudoscience marketing to physicians and health misinformation on social media.

The Podcast
Dr. Chouinard has worked to stop big online retailers from listing products such as MMS (autism “bleach cure”) and challenged the normalization of marketing pseudoscience within the professional organizations to which he belongs. Big Herba markets to physicians as much as… the other guys, and without the same product regulation on claims or product quality.

When pseudoscience insinuates itself in professional medical conferences, as Dr. Chouinard discusses, it quickly blurs the line between science-based medicine and snake oil– and that’s a big part of the public health problems we face today around such issues as lowering vaccination rates, autism pseudoscience and more.

Supplements & complementary medicine are a multi-billion dollar industry that thrives in part off of cultural anxieties. Perpetuating the anxieties (or even manufacturing them) is part of the marketing for many pseudoscience products. Dr. Chouinard and I discuss the first-line role that physicians can play in addressing these anxieties; for example, among parents of newly-diagnosed children. Physicians have a key role as intervenors to prevent the harms associated with pseudoscience, to provide information and guidance to patients, and parents of patients, in informed decision-making.

We also talk about Canada’s need for regulatory reform on complementary/alternative medicine (CAM). As Dr. Chouinard put it: “Regulatory bodies should be adhering to evidence-based standards, not hiding behind CAM policies. The public should be warned about physician members who are utilizing treatments that are not evidence-based and steps should be taken so that they are not endangering patient health.”

This episode was cut a bit short, so it ends with some of my own thoughts about proxy consent and CAM.

Thank you again, Dr. Chouinard for this insightful interview.

Links from the conversation
Health Canada’s Health Product Complaint Form
Physicians’ Guide to Autism Pseudoscience, by A4A

Listen to this episode on Stitcher here
Listen to this episode on iTunes here

 

 

“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

McCreary picFor this episode, I interviewed 23-year-old comedian Michael McCreary. Listen to the audio link below
(for iTunes and Stitcher links, see the bottom of this post)


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.

The Episode
It was so much fun to talk to Michael!! His thoughts on comedy, writing, neurodiversity and autistic representation are very interesting. I’m going to dispense with all my analysis here and just say: have a listen.

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

Listen to this episode on Stitcher here
Listen to this episode on iTunes here

 

“There is an inherent conflict of interest in professional self-regulation”: Interview with Bad Science Watch’s Ryan Armstrong

ryan pic

This week I interviewed Ryan Armstrong of the pseudoscience watchdog group Bad Science Watch Canada.

Listen to the interview at the link below or via the iTunes and Stitcher links at the end of this post.

Bio
Ryan Armstrong is the Executive Director of Bad Science Watch Canada, an independent non-profit consumer protection watchdog and science advocacy organization dedicated to improving the lives of Canadians by countering bad science.

Ryan has a PhD in biomedical engineering and an undergraduate degree in medical biophysics (BMSc). His research has spanned across multiple domains including bioethics, medical imaging, image processing, human-computer interaction and surgical simulation. He became interested in science-based activism after encountering false cancer treatment claims in his community. Learning that these practitioners were regulated health professionals, he found that the regulatory system was not adequately protecting the public.

The Episode
Ryan and I talked about several issues around “natural health products” (such as vitamin and herbal supplements) and off-label use of prescription drugs in Canada. These issues include:

  • lapses in inspection for integrity;
  • misleading labeling claims;
  • proxy consent for children and others who can’t give informed consent.

In the US, the Health Fraud and Consumer Outreach Branch of the Food and Drug Administration (FDA) has engaged in regulatory action on matters including products tainted with active drug ingredients such as anabolic steroids; metals like lead and mercury; and common allergens. In a recent case, the use of Hyland’s Teething Tablets was found to be associated with belladonna toxicity in infants. Between 2007 and 2016, the FDA issued warnings about unapproved pharmaceutical ingredients in 776 dietary supplements; however, one report notes that less than half of these led to voluntary recalls.

In addition to supplements, the FDA has also cracked down on off-label use of prescription drugs, such as the off-label use and sale of chelating agents to “cure” autism. Like the FDA, the National Health Services in the UK has created a list of “Do Not Do Recommendations,” includingDo not use chelation for the management of core symptoms of autism in adults”.

There is no similar Do Not Do list in Canada. Other than issuing warnings against the sale of MMS (here, at least one case has been prosecuted by the Crown), we don’t hear very much about Health Canada engaging in regulatory actions against supplement makers for integrity issues. Neither do we hear about Health Canada taking action on off-label use, a matter that is generally “handled” by self-regulating colleges.

I think Health Canada needs to take a page from US and UK regulators, for two reasons.

1. Contamination of natural health products is a serious health and safety issue.

When University of Guelph researchers tested 44 bottles of popular supplements sold by 12 companies, they found that many were mixed–or replaced entirely–by cheap fillers like soybean, wheat and rice, which were not listed on the label. Still others contained walnut, a common allergen, also not listed on the label. Bottles labeled “echinacea” were found to contain a ground up bitter weed, Parthenium hysterophorus, an invasive plant found in India and Australia that has been linked to rashes and stomach illness. Two bottles labeled as St. John’s wort were entirely comprised of fillers, with no St John’s Wort in the capsules at all. All in all, one-third showed “outright substitution, meaning there was no trace of the plant advertised on the bottle.”

As David Schardt, a senior nutritionist at the Center for Science in the Public Interest, an advocacy group. “Given these results, it’s hard to recommend any herbal supplements to consumers.” It’s not just lack of efficacy that’s the concern, but risk of illness or allergic reaction, or other reaction (as in the case of supplements tainted by steroids or Viagra). As Chris MacDonald of the Ted Rogers School of Management writes: “Unlike homeopathic remedies, which (unless adulterated) generally contain no active ingredients at all, herbal remedies can have actual biological effects.”

When products sold at GNC (US) were tested by an expert in DNA barcoding technology, just 21 percent of the test results had DNA from the plants listed on the labels.  “In many cases, unlisted contaminants were the only plant material found in the product samples.” Based on DNA testing, the New York State Attorney General’s office accused four major retailers of “selling fraudulent and potentially dangerous herbal supplements and demanded that they remove the products from their shelves.” Other actions have followed this one.

And last year, a report in the Journal of the American Medical Association concluded that: “Active pharmaceuticals continue to be identified in dietary supplements… even after FDA warnings. The drug ingredients in these dietary supplements have the potential to cause serious adverse health effects.”

2. Self-regulating bodies in Canada do not appear to be adequately regulating off-label use of pharmaceuticals such as chelating drugs. A Do Not Do/Use list would help provide guidance as we seek a regulatory framework that enforces the use of these products.

The system of professional self-regulation–where members of a given profession comprise the complaint body when members of the public have a grievance about a medical practitioner–is flawed. In some cases, self-regulating colleges are not taking enforcement action when legitimate complaints arise about the practices of their members. A self-regulating review board may be made up of two professionals (peers who often know the respondent professionally) and one member of the public. Rarely if ever are ethicists or other adjudicators involved. Judgements often come out in favour of the professional without due diligence or drag out for years, even decades.

As Ryan notes: “The current system has been constructed largely on the assumption that the majority of a given profession is well-meaning and ethical and that their organization into a regulatory body would help weed out the outliers and bad actors. … [W]hat has not been taken into account is the existence of cultural delusions that can possess large communities within a profession or even the entirety of a profession.

“We need an independent entity that is science-based and ideally can make judgements on diagnostic and therapeutic procedures.”

In addition to regulatory issues, Ryan and I discussed the nuances of informed consent, as well as the predatory nature of false marketing claims and the future of regulation in Canada. I learned so much from this interview about the issues in Canada, as well as major projects in the works and up ahead for Bad Science Watch, an amazing organization. Ryan, thank you for this insightful interview!!

Resources
Bad Science Watch website
Twitter: @badsciencewatch
On Facebook: Bad Science Watch

Listen to this episode on Stitcher here
Listen to this episode on iTunes here

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 (Stitcher and iTunes links at the end of this post.):

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!

The basic premise that “kids can progress and be happy without having to change who they are fundamentally,” should be intuitive. But this idea runs counter to most prevailing public-funded models of autism services. FDM is a service informed by the population it serves, scalable to a spectrum of needs and environments, on an accessible and portable platform, at a much lower cost than standard services, with satisfied users – and it’s effective. It also contains a crucial element of DIY, so that families and educators can integrate the strategies into their environments without a lot of overhead, handlers, case workers, supervisors, etc.

Oswin and I talk about AAC (including the importance of introducing it early) and FDM’s methods for introducing AAC, both to the user and to their parents. We also talk about communication in general, compliance versus connection and other concepts that represent the really seismic shift on the horizon for autism services (dust off your resumes, BCBAs, you’re going to need a new gig soon…)

Oswin came to the idea of FDM organically, based on her experiences as a parent. “As I look at everything that I’ve ever been given for my own kids, I always see this ‘how are we going to make them look a certain way,’ [approach] but never does it come out that people are looking for happiness.” And that is a key element of FDM: a fulfilled life for autistic/neurodivergent people. It offers easy-to-understand, concrete ways to set up a home or school for communication access and sensory-friendly spaces that also destigmatize access needs.  It replaces the old idea of hand over hand learning to make it about hand under hand learning, assuming competence both in the children and in the families as they connect towards a common goal.

Oswin says: “[parents] feel good about what they’ve done and I’m blown away by how many teachers, SLPs and OTs are coming away saying ‘you have fundamentally changed the way I do therapy.’ And that is so amazing for me, because that’s the whole point. To recognize that [autistic/ND people] have our own needs and our own development and none of this means that we can’t learn, or that we need to be changed.”

Thanks again, Oswin, for an inspiring interview!!

Link:
Foundations for Divergent Minds

Listen to this episode on Stitcher here
Listen to this episode on iTunes here