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

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. Links to iTunes and Stitcher at the end of this post.


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 bilingual families, 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.

“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.”

In Ontario’s education system, autistic and intellectually disabled (ID) students are disproportionately targeted for special education and the school-to-prison pipeline, too often underestimated and discarded from the opportunities that their white, nondisabled peers have access to. Students of Colour are still targeted disproportionately for disciplinary actions and overtly or tacitly streamed out of the path to higher education.

Rather than make the systemic changes we need for true inclusion and equity, too often policymakers focus on band-aid solutions. For example, Ontario’s current government is focused on funding “more therapy interventions” for anxiety in autistic students rather than addressing the sources of the anxiety, (which is the stigma and trauma inflicted by the existing segregated education system.) The government has rejected recommendations to reform school and service models. Currently, the system is mostly working against the needs of the community: especially for those most marginalized, such as newcomers, people of Colour, non-verbal autistics and economically disadvantaged families.

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

damian“The best practitioners are humble when they meet a new person. A poor practitioner is someone who thinks they know it all and can just apply a model and intervention and…tick a box,” says Dr. Damian Milton. In this broad-ranging interview, we 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. Links to iTunes and Stitcher at the end. Transcripts to be published here soon, too!


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.

The Interview
Dr. Milton’s writing about the double empathy problem, which neatly problematizes the Theory of Mind hypothesis about autism and frames empathy as it is actually defined – a reciprocal state, and the misunderstandings between autistic and non-autistic people likewise as reciprocal—is seminal, and has since borne itself out in the research of current scholars such as Noah Sasson, Brett Heasman, Elizabeth Fletcher and Catherine Crompton.

In short: relationships are a two-way street. It isn’t that “autistic people can’t imagine other peoples’ perspectives” (as theory of mind suggests) but rather, that autistic people and neurotypicals lack a reciprocity for understanding one another’s communication, movement and experience of the sensory world. And that what we all want –neurotypical or autistic—is really at its core the same: relationships and connections with others. Generally, we are all social beings, needing love and warmth, wanting to give and care for others, but this sociability (and even the desire and expression for connection) gets mistranslated between neurotypes. We understand our in-group; we struggle beyond it.

But, you may be asking: “well, duh. Why did researchers before Milton et al., not understand that empathy is reciprocal and that autistic people are…well, people?” We can find some of the answers in the older, medical model of disability—an approach under which any problem a disabled person faced was conceived as a reflection of their own deficits, and where social factors (barriers, exclusion) were not considered (as they are under the newer, social model of disability). Under the medical model, the individual is pathologized by professionals ergo objectified; even actually broken down into parts within some behaviourist-influenced disciplines such as ABA.

And while the medical model of disability has widely been discarded in much other disability praxis/public policy, it is still very present, at least outside of the research world, in the application of Applied Behaviour Analysis (ABA) and its impact on the current autism therapy world.

Just look at this section from an article (in another galaxy far away from Milton’s work)–a 2017 ABA text: “Until a child is mainly controlled by a desire to fit in with peers and please the people they love in the verbal/social world, ABA treatment should be the priority.” That article, which debates whether parents should allow their autistic child to attend school instead of an ABA centre (!!!!), views the goal of autism therapy as “to move a child from reacting to the world though their senses (feeling, tasting, touching etc. – sensory motor world) to reacting in the world because they are trying to please others and live up to their parents and society’s expectations.”

Sorry … but isn’t it normal to react to the world through one’s senses? The ABA perspective, in penalizing sensory responses, really deeply pathologizes being human. It is weird. Milton and I talk about this, as well as how medical-model based approaches determine goals, objectives and even need. When these are defined by ABA practitioners, they look very different than when defined by the very people that autism services are designed to serve—autistic children and adults.

Why, for so long, has autism services been defining “need” based on its own quirky rubrics, rather than communicating with its subjects to find out what their needs were? Perhaps because they were never allowed to be subjects—only objects–in that model.

“Without taking autistic sensibilities into account,” says Dr. Milton, “you’re quite possibly going to harm people or do damage. And that’s a problem of practitioners working with autistic people everywhere, because trying not to harm people should be the number one priority ethically.” Milton argues that we need more participation of autistic people in understanding the best support strategies: “what they’re for and how people are treated, and much better standards of research in autism intervention.” As well, he suggests that we need a rethinking of the goals, for practitioners to be reflective and approach their practice with humility.

To grant subjectivity to autistic people in research and practice is a paradigm shift from segregation towards inclusion. Indeed, we can’t get to inclusion as a society without it. This is why autistic self-advocates are pushing back so much on ABA, because its counter–the social model of disability–is essential towards acknowledging our humanity.

And it’s why discussions about our rights must include an unpacking of the philosophy of difference. We need to do some big-time deconstruction in order to build a new ethos of inclusion! Milton and the new generation of autistic (and affirming) researchers are bringing great promise to fulfilling the highest goals and objectives for autism research—human rights, quality of life and dignity for all autistic people.

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

Stopping Chelation-Autism Therapy in Canada: An FAQ and Action Plan

A quick break from podcasts to announce that on December 16th, the Globe and Mail reported that Ontario regulators declined to take action on my complaint about an Ontario doctor administering chelation drugs to children as an autism treatment (a practice that is banned in both the US and the UK).

I’ve written an FAQ about the case, including global context and next steps. You can read  it here: Stop Chelation-Autism Therapy

You can also get case updates on Twitter: @againstcures

 

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

Kohn photo  This is a fascinating interview with Alfie Kohn, who has been researching and writing about education, parenting, authority and co-operative learning for years, driving home a simple fact: rewards and punishment are two sides of the same coin –and they’re not helping us to raise the kind of children we say we want to raise.

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

shannon  I 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