Charles Arthur is a journalist who worked on daily national papers in the UK for twenty years, and has written three non-fiction books since 2011, including the one we’ll discuss, Social Warming. He met Bill Gates when Microsoft was small, Steve Jobs when Apple was smaller, and Larry Page (of Google) when Google was already pretty big. He’s visited the offices of Facebook and Twitter, but their CEOs remained elusive. He’s been freelance since 2014 and lives in southeast England.
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.
Listen to the audio at the link below or on Stitcher or iTunes here. Read the transcript, below audio file.
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 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.
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 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.
. Transcribed by Julie Ann Lee: Transcript_Noncompliant_Burrow
. 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 (specificallyProloquo4TextandProloquo2Go) 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.
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.