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.
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.
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!
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.
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.
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).
Read the transcript by lcicking the file below the audio.
Transcript by Julie Ann Lee: Transcript_Melanie_Keiling_Noncompliant.
Melanie Keiling is an autistic mother of autistic children. She runs the blog Autistic Grandma, and campaigns for autistic human rights, and works with the autistic community directly to provide emotional support for individual self healing, self care, and personal development. Her goal is to create a stronger community by providing a platform for change in the way autism is viewed by the world, and to help gather autistics together to support one another.
In the first half, Melanie and I talk about the Autistic Grandma social media group and the supportive role of autistic communities.
In the second half we dive into the topic of health care—specifically cancer care, and the biases that still exist within it, especially towards women and nonbinary people—and come up with some pathways towards changing things for the better.
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.
I had a very interesting conversation with psychologist Simon Baron Cohen, whose new book The Pattern Seekers, discusses the history of invention, the importance of recognizing and valuing neurodiversity, and the challenges of bringing change to institutions such as schools and the workplace to create better working and learning environments for autistic people.
Simon Baron-Cohen is professor of psychology and psychiatry and director of the Autism Research Centre at Cambridge University. He is the author of six hundred scientific articles and four books, including The Science of Evil and The Essential Difference. On this podcast, we discussed his new book, The Pattern Seekers.
I had a very informative and thought-provoking conversation with Dr. Marc D. Feldman, an expert on medical child abuse and factitious disorder. We talked about medical child abuse, including Munchausen-by-proxy and the abuse of autistic children through autism pseudoscience. We also talked about interventions and supports, the need for education and what we all can do to stop the abuse.
Listen to the podcast right here by clicking the audio link below. Full transcript below the audio link. Listen to this episode on Stitcher here Listen to this episode on iTunes here
Bio Dr. Marc D. Feldman is Clinical Professor of Psychiatry and Adjunct Professor of Psychology at the University of Alabama in Tuscaloosa. A Distinguished Fellow of the American Psychiatric Association, he is the author of 5 books and more than 100 peer-reviewed articles in the professional literature. Dr. Feldman is an international expert in factitious disorder, Munchausen syndrome, Munchausen by proxy, and malingering.
Bio: Megan Linton is a disabled student earning her Masters of Public Policy and Administration at Carleton University, where she is currently working on thesis research surrounding sexual citizenship for institutionalized populations. Megan’s research interests include data gaps and disabled people, incarceration, and legacies of eugenics in Canada.
Megan and I talk about the largely unwritten history of residential institutions for autistic and neurodiverse youth in Canada—a history that she and other scholars are now documenting along with Canada’s eugenics practices, which operated hand in hand with the residential institution system. We also discuss shifting notions of eugenics in the postwar period, revolving around anxieties about “the creation of the conformed family.”
As Megan points out: “This was the goal of the moral reformers for decades leading up to that point. Every single part of constructing Canadian citizenship was about enforcing order and conformity, so when we saw the construction of the carceral settings throughout the mid 19th century then we too saw the building of ‘The Canadian Citizen’ [including] this construction of the deviant other who needs to be put away and those outside of the institution are those who are conforming.”
We also discuss how “reformed” institutions today maintain the same purposes as the older institutions, even as the Canadian government has promised de-institutionalization for decades. Megan discusses how, in Manitoba, provincial political parties bent to lobby pressure to keep the institutions open and how progressive politicians turned their back on human rights in favour of “jobs in the community” and pressure from labour.
One residential institution in Ontario, the CPRI, now a so-called therapy centre for neurodiverse youth, is housed in a former sanitarium and located at the end of a street named Sanitarium Road. Like the older residential institutions, which meted out class action human rights settlements in the hundreds of millions, the CPRI is now the subject of a class action by former residents as recent as 2011.
Megan and I focussed on both the large institutions (50 or more youth) and then on the small “i” institutions–such as group homes. Both Megan and I place these on a continuum of segregation, along with all-day programs such as sheltered workshops for adults and Intensive Behaviour Intervention centres for preschoolers.
Megan and I conclude by talking about alternatives – viable solutions such as independent-supported community living and the money-follows-the-person model in some parts of the US. In Canada, 80% of federal funds for housing for I/DD people go towards segregated housing or “congregate care” homes and only 20% goes towards independent living in the community. Yet there’s robust research that shows clear benefits of living in the community, for I/DD individuals and for the community. Canadian politicians
To change the policy landscape, we need to apply pressure on politicians as we also work for a broad societal understanding of the human rights of disabled people and the true options that are available outside of Canada’s residential institution model.
In this podcast, I interviewed Melissa Eaton, one of the first (and most effective) campaigners against autism pseudoscience. We talked about phony autism cures and what we can all do to stop the people selling them.
Listen to the podcast right here by clicking the audio link below. Listen to this episode on Stitcher here Listen to this episode oniTunes here
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 beenfeatured on NBCand 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. Melissa is a true hero and I was honoured to speak with her for this podcast!
The episode: We started with a summary of some of the major phony autism cures/ autism pseudoscience. We focused on chelation, MMS (bleach for autism) and GcMAF. We discussed why they are dangerous; how popular they are; how sellers market to parents via social media; and how much sellers profit from their scams. We then explored legal regulations… when they work (stories of success) and why it is often hard to get governments to stop the scammers from selling these products (the challenges we still face).
We also talked about the role of social media and journalism in exposing and de-platforming the scams. We discussed the broader societal biases against autistic people–and against children that allow parents to embrace these “cures” and thatalso prevent regulators from using common sense and truly shutting them down.
But the campaign to end autism pseudoscience does not get any support from traditional, large, NT-led “autism” organizations such as Autism Speaks and Autism Canada (both of which have a long history of reinforcing autism pseudoscience). Melissa and I talked about that towards the end of the podcast:
Anne: What’s happening to these children is torture. Autistic children are being tortured. Where are the “autism organizations”? They are nowhere to be found. Because somewhere deep inside, they can’t make that leap towards autistic acceptance. And it shows that the “autism organizations” are really broken. The people who are going to bring about human rights protections are the autistic-led self-advocacy organizations, because they’re the only ones who are… even making a statement about autism pseudoscience.
These appear, to us, to be really basic concepts, so we really have to ask ourselves why. Why won’t the mainstream autism organizations take a stand on this?
Melissa: These [mainstream] organizations continue to collect money from communities. This money could be going to things that actually help autistics. And they’re not addressing the problems of autistics like autistic-led organizations are doing. Autistic-led groups definitely have the grasp of what needs to happen and the supports that are needed within their communities, yet they’re overshadowed by these bigger organizations who do not have autistic interests in mind.
Melissa and I talked then about how we keep hope, and the smaller victories that build towards the kind of major reform we are slowly achieving. Melissa pointed out the role that each individual can have in education and the importance of grassroots advocacy. “Everybody can do something,” whether it is signing petitions, reporting, flagging, complaints, letters, media awareness, or many other means of support. Conversations in parent groups also make a world of difference. After the interview was over, Melissa and I talked about a few groups online that are bringing these parent discussions to the fore, including Autism Inclusivity and Autistic Allies.
In this episode, I talk with Matt Brignall, ND, about how the natural health movement has been co-opted over the past 3 decades by capitalist interests, as well as what we can all do to counter Covid pseudoscience and antivax.
Listen to the podcast here by clicking the audio link below. Listen to this episode onStitcher here
Listen to this episode on iTunes here
Bio: Matt Brignall, ND is a naturopathic doctor in Tacoma, Washington. He currently works in a community-based primary care practice. For nearly 20 years, he was a professor in the naturopathic training program at Bastyr University. He left because he felt that the alternative medicine community was losing its ethical bearings, and becoming a threat to individual and public health. In addition to his practice, he is currently working as part of the Medical Reserve Corps COVID-19 response team. Matt is the parent of a 20-year-old daughter with Rett syndrome, and is active in disability advocacy.
The Episode: I was really glad to talk to Matt because we come from similar backgrounds and we have both witnessed the natural foods/health movement, which was once mostly about supporting workers and farmers, now being co-opted by corporate interests who’ve morphed it around a model of personal “wellness,” complete with gurus telling people which snake oil products to buy (and earning billions from it). We also addressed how, in Covid times, predatory right wing interests are leveraging people’s fears to build momentum for political and white- supremacist movements.
Persuasion across differences: Matt and I talked about science communication; namely, how do we really convince people, within our own families and communities, to steer clear of the toxicity of the Mercola/Natural News empire, to detect pseudoscience and to understand the importance of vaccinating? There is a clear need for more compassion and compromise, for the sake of persuasion and also for preventing radicalization. We need to stop the divisiveness between science and anti-science because this divisiveness only serves to make things worse.
Matt’s website, NDs for Vaccines, offers a wealth of information for naturopaths as well as consumers on the safety and the need for vaccines. It’s really about creating an environment to find common ground and solutions– that might not always be the solutions we want in a perfect world, but which are realistic and bring us closer to public health goals.
In my own family and community (homeschool community), I follow these guidelines: choose wisely who I want to spend energy discussing this with (not trolls!); focus on common perspectives; mainly lead by example (talk about what my own family is doing and why, rather than “should-ing” on people); never call names or make fun of a person; focus on conversing with people I know personally; and show flexibility (e.g., be open to solutions that aren’t my perfect solution).
Monsanto & the problem of orthodoxies: Monsanto “millennial engagement” campaign (which I reference in the podcast) is an example of how corporate influence on our community really diluted a central message about vaccine safety. Much like Mercola & Company co-opted the natural health movement, so did players like Monsanto attempt to infiltrate issue/interest-based social media groups (environmental, pro-vax, STEM) to develop an association between their product and a range of science-based movements—seeming to want to create a “science orthodoxy” in which supporting their corporate brand was central to being a good scientific comrade.
Journalist Kavin Senapathy observed the following dynamic from Vance Crowe, Monsanto’s Director of the initiative: “Crowe preached a scientific gospel of GMOs that went something like this: If you’re pro-science, you must be pro-GMO. If you’re anti-Monsanto, then you’re anti-GMO. Therefore, if you’re anti-Monsanto, you’re anti-science. His objective, it seemed, was to render opposition to GMOs as ridiculous as belief in Bigfoot, and to amass a movement that could be counted on to shout that message from the rooftops.”
Monsanto’s intrusion into specific science-related groups created credibility problems for the groups, especially vaccine-focused groups. At the height of it, vaccines and Monsanto had become mixed in some dialogues, as if one couldn’t support vaccines without uncritically supporting Monsanto. We now know much of the GMO rhetoric had been planted in science groups by the company itself and that a few of high-profile “pro-science” voices were actively promoting the Monsanto brand. Going forward, we should all take care to stay on topic if we want to be persuasive (e.g., climate change, vaccines) rather than demanding adherence to completely unrelated belief systems, especially when these focus around a brand.
Re-open protests and the radical right
Much like Monsanto’s approach, pseudoscience purveyors like Mercola/Natural News and Del Bigtree’s enterprise infiltrated counter-cultures on social media (including the home ed community) in an attempt to institute a sort of orthodoxy that conveniently includes supporting their brand. Within that belief system, if you have a nuanced perspective on nearly anything, you’re just a sheeple.
Ironically, Mercola, Bigtree and other leaders require a fairly sheep-like adherence to their belief system. This is deeply disturbing, especially as antivaccine and vaccine-hesitant groups have been drifting further to the right wing politically, particularly since their views are currently being validated by the current US administration (see links, below.) Followers are not just being told how to buy anymore. They are also being told how to vote.
Political groups like the Tea Party have been promoting and leveraging the re-open protests for their own agendas and sometimes for a corporate agenda (see links, below). And we are now dealing with the US President normalizing what were formerly seen as fringe, pseudoscience views. Examples include Trump’s supportive comments about antivax, and his seeming to recommend products like MMS bleach for Covid which “wellness guru” Mercola also endorses. (See my OpEd about this in the links below.)
In many ways, corporate interests and the radical right have been working together to radicalize antivax, home ed and other traditionally non-partisan groups towards the far right (see links at end). Beyond the grassroots communities, right wing lawmakers in the US–and at least one far-right political party and the Yellow Vests movement in Canada are also leveraging the alienation within antivax communities to recruit new members (see links below).
Social media is a key pathway for this. It seems like good news this week that Natural News was removed from the Facebook platform… but these groups can also move to new, even less-regulated platforms, and of course they even have a bigger platform now within some powerful political movements. Those of us working against pseudoscience and/or in antifascism really have our work cut out for us.
As Matt states: “We’re really only in chapter 2 or 3 of a very long book.”
I always enjoy talking to Christopher and this was a wonderful and educational conversation. Chris and I talked about our rural upbringings and autistic relationships with natural world; what’s happening in neurodiversity communities in Alberta; school inclusion and the importance of class size; housing supports and neurodivergence; outreach to remote communities and so much more!
Link to the audio below. Link to the podcast on Stitcher and iTunes at the end.
Bio: Christopher Whelan is an autistic self-advocate and a Housing First social worker operating in his community of Fort McMurray, Alberta. He is the founder of Neurodiversity YMM: a grassroots sharing circle for neurodivergent and disabled people in the Regional Municipality of Wood Buffalo, as well as the director for his local chapter of Autistics United Canada. His new publication, the 95 Theses of Neurodiversity, offers 95 principles to guide communities in promoting Love, Self-Determination, and Inclusion of neurodivergent people in society.
I read Albert Camus’ The Plague for the first time in university. My prof told the class that the book was a metaphor for the rise of fascism in Europe, but her interpretation didn’t ring true to me. The main point of my term paper: “actually, it’s just a story about a plague” earned me a big old C grade. Turns out I was right, though.
Camus was a writer of extraordinary imagination, and it is a sublimely comforting experience to read this book again for what it is: a story about a plague–and how we respond culturally to plagues. Somehow in his brilliance, Camus managed to time-travel through this work, capturing the last few weeks of our lives in our cities in 2020 as he describes the beginning of the plague in the City of Oran in the 1940s.
“Everybody knows that pestilences have a way of recurring in the world; yet somehow we find it hard to believe in ones that crash down on our heads from a blue sky. …A pestilence isn’t a thing made to man’s measure; therefore we tell ourselves that pestilence is a mere bogy of the mind, a bad dream that will pass away. But it doesn’t always pass away and, from one bad dream to another, it is men who pass away. …
“Our townsfolk were not more to blame than the others; they forgot to be modest, that was all, and thought that everything was still possible for them; which presumed the pestilences were impossible. They went on doing business, arranged for journeys and formed views. How should they have given a thought to anything like plague, which rules out any future, cancels journeys, silences the exchange of views. They fancied themselves free, and no one will ever be free so long as there are pestilences.” (1)
Camus is describing a timeless idea: that the kind of freedom that we enjoy in urban spaces exists because we believe in it, because we have dreamed it. The moment that we stop believing in it (as we are doing now, out of necessity), it ceases. And then when it is resurrected it’s joined by a new companion, the soft shadow of our grief.
Remember after 9/11, the saying “If we have [x restriction], we’re just letting the terrorists win”? We were all grappling with how to keep the dream alive so our cities didn’t die. The new tower was a talisman; it kept our dream aloft and our very life as urbanites viable. But it was a changed life. There was a clearly delineated before and after.
In the years after 9/11 I felt a new sense of peril, imagining how terrorism threats and fears would change the things we take for granted in the city. As days and years rolled by, I watched and waited for that freedom to disappear, feeling a punch in my gut every time a new metal detector was installed, a gate erected, a guard posted. At the same time I also felt a sense of gratitude for the parts of the before that did remain. In Toronto, I was still able to jog down the subway steps and hop on Line 1, to take a ride every day and nothing happened. I’d look around and revel in the aliveness of the dream we had made real, even as I worried that it could be fleeting.
I realize more now that we’ve always had limited control over keeping our lives free in the city, no matter how tall the tower or how big the dream. Our freedom is currently tethered by that thing that just came crashing down, right out of the blue sky (although for anyone looking up, it had been in clear plain sight). And despite the marketing jive of our modern snake oil “Covid cure” hawkers, the current threat to our freedom (the pandemic) is at its core natural—and what saves us is the unnatural, our response and vigilance to control and cure people of it. As Camus writes “What’s natural is the microbe. All the rest – health, integrity, purity,– is a product of the human will.”
The failure of so many people to be vigilant in this time is heartbreaking, as it mostly always has been during times of plague. But how many of us would have predicted that it wasn’t small acts of enemies of the state, but rather the ignorance of the crowd that has brought us to this place without freedom? Even as the pandemic was fully bearing down on our cities, people continued to walk freely on the air of a dream; as Camus put it, “think[ing] that everything was still possible,” so fearful of waking from the dream that they imperiled our freedoms and endangered so many lives.
The state responded rationally, with restrictions to save us all–from the crowd. And here we are, alone in our apartments trying to make peace with what just happened and fearing for the future. Urban life is now restricted in some places to a kitchen and a bedroom, and a view out the window at the vicissitudes of weather. As Camus wrote about Oran: “Thus each of us had to be content to live only for the day, alone under the vast indifference of the sky.”
We now wait through the horrors of this moment for the end–and at the end, for our cities to come back to life. I don’t want to give spoilers for Camus’ story, about how the city of Oran responded during and after the epidemic, but suffice to say we can learn a lot from the story itself, and from the history of pandemics in our world, about the kind of shift in our consciousness we need to be making. We need, frankly, to make a move away from regressive notions of the organic and intuitive and more towards the rational and scientific in order to steel ourselves against the next threat, to protect our cities and the wonder of urban life through practical measures and not just dreams. We will need all our scientists, our artists and advocates to make that a reality. For now, we try to stay safe, living for the day.
1. Camus, Albert. The Plague. 1991 Vintage edition. 37
2. A reference to the chapbook by Lawrence Ferlinghetti. 1955. Pocket Poets Series Number 1. City Lights Press.
Note: For another analysis of The Plague in contemporary context, please see “Albert Camus’ The Plague and our own Great Reset” by Stephen Metcalf, March 23, 2020, Los Angeles Times. It is really, really interesting!!
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 or read transcripts (also 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!
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!
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:
In this broad-ranging interview, Dr. 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 find the transcript below that! Links to iTunes and Stitcher at the end of this post.
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.
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. 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.”
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.
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 Autismbookand 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.”
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.
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.
We also talked about the problems with behaviourist approaches that focus on measuring outcomes—which is the core of Applied Behaviour Analyticsand 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.”
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 an upcoming episode.
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.
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.
We also talked 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.”
This episode was cut a bit short, so it ends with some of my own thoughts about proxy consent and CAM.
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.
.. Transcript by Julie Ann Lee: Transcript_Ryan_Armstrong_Noncompliant
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.
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 addition to regulatory issues, Ryan and I discussed 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!
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!