This is part 2 of my interview withAmanda Seigler,a children’s rights advocate and autistic activist, about university studies on autism that have questionable ethics. We talk about Duke University’s experiments where autistic preschoolers are being restrained and injected with stem cells to see if it will change them. There are many risks involved and no benefit to this process, which is currently under fire for conflicts of interest.
The otherstudy, which also enigmatically passed an ethics review, involved putting Nicotine patches on autistic people with violent meltdowns to see if the nicotine would randomly stop them from being aggressive, even though there are already evidence-based approaches to de-escalation in these circumstances.
Amanda and I discussed how it is that research like this gets funded at universities and what can be done to protect vulnerable people by preventing this type of research from being approved.
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 wrote this after my recent surgery. Audio here, transcript below.
Half a Woman
You have to take off your wedding ring before surgery. I remembered that as we were rushing around at 6am, trying to get out of the house on time for me to check in at the hospital. There was a lot to remember that morning: what clothes to bring, my health card (but no wallet), the book, pen and paper, my glasses, a quick drink of juice in that last hour I could eat or drink anything. Then there were the big hugs, too many, it made me late, as the boys stood and watched me walk into the hospital. The line was short that time of day. The usual questions, the hand sanitizer, stand in the footprints at the elevators. Then I’m there on the second floor and it’s just like the last time, except it’s a new hospital, a brighter and friendlier place and throughout the morning during surgery prep we all get to know each other a bit.
Surgery then gets delayed due to someone else’s emergency taking over some rooms, but I have a bed to lie on and a book and the hope that mine won’t be canceled today. Today, I’m lucky. I’m rolling into the surgical theatre at 5pm as the nurse holds an oxygen mask and asks me to think of a place I like to go. And again, it isn’t heaven, I don’t know where it is but I wake up in the recovery room later, half a woman.
I have bilateral breast cancer. With 3 lumpectomies and an excision, there is a lot less of me there now. I didn’t realize when I first had surgery just what was going to be leaving me…all I could think of was the cancer is leaving me. I wasn’t offered plastic surgery at my first surgery but I was for the second. I wavered. It was never going to be the same and I didn’t want to get caught in a place of trying to make it be. My surgeon encouraged me though, to speak to the plastic surgeon, to be sure of my choice …so I sat in a robe in her office while she described what she would do in a series of surgeries. It was about matching their size, so they’d look more the same size.
I was a cultural studies major, I mean, grad school, I know, I understand the whole symmetry thing. That symmetry makes us more naturally attractive, they say, for mate selection, it’s evolution, we learn… an advantage. That it’s in our culture… I know. Some women fear not getting a husband, fear losing their own husband, just want to look in the mirror and feel good, see symmetry when clothed. When naked, too…some women have skin moved from their own belly, their baby bump, up to replace a part of breast, or a whole breast, there are silicon options and even 3-d nipple tattoos. One woman in my support group was told by her hospital that going flat after her mastectomy was not even an option, that’s how normative reconstruction is. She did it because she felt she had to.
So the plan the plastic surgeon was outlining, as I sat in my robe at the edge of the consult table, was to move things around, to lift, arrange, cut out a piece of muscle from my back and move it to my front, something about a spacer and if I did that one I couldn’t do some of my fitness things I love but there were other options too… and it all felt strange, alien to my body and I felt protective and a little defensive. My girls had been through some stuff lately …and the way they looked and felt? I wanted to accept them as they are. Make everyone accept them as they are. I wanted to stay whole just as I am.
At age 16, my mom enrolled us in a mother-daughter assertiveness self defense class, sponsored by the rape crisis centre in our town. In the first lesson, we all practiced saying no. Our teacher was a lovely, friendly, handsome woman whose nickname was Mike, and she coached us through. Louder! Say it Loud! We held up our fists as protection, we kicked, we shouted NO! As students, we tried not to laugh as we “attacked” each other in the drills, it felt funny to touch that way and at first we were apologizing for pushing at each other, lifting and flipping, going on the offense, the defense, but these were things we needed to do to each other to be ready for the world, by the end there were no apologies, no smiles. No came easily.
I used it, through high school, through college, at work, at parties, riding alone in the back of a cab or on line at a show, at conferences, at the library, at the pub, on the subway, in the park or in the myriad other places where men want to push women, I could push back. The word held power like, a force field around my body, a bodyguard for my girls, whom I loved. It worked in advocacy too…whether for a student or a colleague or for, myself, when the expected answer was yes but my mind said no, I thought of Ms. Mike guiding me as I kicked my leg. It’s not always a yell, sometimes it’s just nicely saying “This isn’t for me.” Both take strength.
So when my surgeon asked if I’d decided to add the plastic surgery, the word came out again. I knew that most women probably don’t say no to all that free beauty. I understand why they say yes and… I’d thought of saying yes too. But I want to keep my breasts as they are, maybe because I’m different too now. After walking through fire in chemo, radiation to come, having surgeries, going through it all…no. And I know I’ll get another ask, if I am sure or if my no isn’t just all the trauma of the past 6 months talking…that I’ll be told I can always change my mind like some do and go back for a revision later, after. After all this is…over.
And this time I don’t say no to my sisters who tell me to keep my options open, who seem worried about my symmetry, or worried that I will worry over it. I know it comes from a place of caring but I also wish there was more space for a caring validation that we’re all worthy of love even without perfect symmetry and that those of us who’ve walked through the fire need most of all to know we are still whole, even after loss. In the booklet from the hospital this comes in one single line, like poetry, at the very end of the very long section on breast reconstruction options. And here’s what it says:
“It is also ok to decide that you don’t want any of these options.”
I couldn’t remember where I’d left my ring. In the early-morning rush, it had slipped into the flow of our household, amidst pens and meeting notes, drawings, coffee mugs, rocks and sea glass, charger cords and stacks of books. It was somewhere special, I just knew it, but where? I went to sleep that night in a post-hospital haze, to wake up in the afternoon and reach over on the bedside table. The ring was there. Our house was quiet, the guys were out. I slid my ring onto my finger and sat in the silence contemplating my hands and then my whole body in itself, in my home and in the world. A body that grew into itself, that said the nos and also the yeses and married and moved and changed, that held closely another life, and another… a body that will grow older too, if I’m lucky.
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 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!
Cal Montgomery is a trans, queer, autistic, physically disabled activist and writer in the United States and a survivor of long-term institutionalization. He is a Director of the Board at the Autistic Self Advocacy Network, engages in direct actions and civil disobedience around disability rights issues and is a former member of ADAPT, the US direct-action organization.
Cal is at the forefront of action against the electric shock aversives used at the Judge Rotenberg Center in Massachusetts, which we talk about in the podcast. Cal is probably best known in the neurodiversity community for his essay “Critic of the Dawn”. In it, he writes: “Disability is injustice, not tragedy; unequal treatment, not inherent inequality.” I highly recommend you check out that essay as well as following Cal’s blog, Watch Well: A Blog about Disability.
Cal’s activism and analysis is informed in part by his own experiences as a survivor of residential institutions and, after institutionalization, working for some time in group homes. Cal describes how the institutional model is replicated in group home settings, even when they have a veneer of independent living. As he observes: “It’s really not that hard to take a program that looks like it supports self-determination and make it all about control. And we see it done every day.” The goal of disability rights is to dismantle the relics of the residential institution approach and to support self-determination–independent supported living–instead. “We need to make it so that people are running their own lives and staff are not running their lives.”
We talked about the Judge Rotenberg Centre (JRC), a residential institution that has been using shock torture on autistic and IDD residents, with a device that has now been banned by the FDA. The JRC has continued to use it against the FDA ban and the international professional association of ABA providers has endorsed its use. Both ADAPT and the Autistic Self Advocacy Network have a campaign to get the FDA to enforce the ban and #StopTheShock.
We also talked about the present day situation of institutions, the fight for fair housing and more. Despite some of the difficult subject matter of this podcast, I walked away with a feeling of hope, the kind of hope that is given by shedding a light on truth–one of the many, many gifts that Cal brings to the movement. Thank you, Cal.
Bio: Bruce Uditsky, M.Ed., is the CEO Emeritus of Inclusion Alberta and its former CEO for over 25 years. He is internationally recognized for his leadership and advocacy in social justice and inclusion for individuals with intellectual disabilities and their families. Bruce is the founder of Inclusive Post-Secondary Education and co-founder of the Rotary Employment Partnerships, both of which have been formally recognized as world-leading innovations. He has consulted and taught in many countries and is the author and co-author of books, chapters and articles on inclusion. He is the parent of two adult sons, one of whom has Fetal Alcohol Spectrum Disorder and intellectual disabilities.
Bruce is a recipient of the Alberta Centennial Medal, Queen Elizabeth II Diamond Jubilee Medal, and the Premier’s Council on the Status of Persons with Disabilities Gary McPherson Leadership Award.
“There are far too few schools who operate on the basis of what the research and knowledge have said for decades, actually,” says Bruce–and this is perhaps one of the most frustrating parts about doing work on human rights and inclusion in schools in Canada.
In this interview, Bruce talked about the use of restraint and isolation on special education students and the need for tracking, regulation, enforcement and appropriate training in positive strategies, trauma-enforced care, de-escalation and alternatives to teacher violence. He also talked about the core biases that have prevented real change, and some amazing initiatives that counter those biases. We also talked about his work through Rotary Employment Partnerships to provide fair opportunities at competitive wages for disabled Albertans. An incredibly informative, and thought-provoking interview!
Thank you again, Bruce, and everyone, for all your hard work on this. Inclusion Alberta and its partners have made school a safer place for Alberta kids. Although there is more work to be done, the seclusion ban in Alberta schools has set a valuable precedent for all provinces and territories.
Raya Shields just received her Master’s Degree from York University (Toronto) in the school of Critical Disability Studies. Her master’s thesis focuses on human rights abuses at the Judge Rotenberg Centre. She is autistic, multiply neurodivergent, and queer. For the last 12 years she has been mentoring autistic children and youth. She is currently working on a series of children’s books.
The episode Raya and I talked mainly about her experiences as an autistic mentor. She described what the time spent with her mentees looks like: what they do, how they plan and what comes out of the experience for the youth and for their families. I hope you enjoy this podcast as much as I did. Lots of great ideas and inspiration as we move towards inclusion in our society.