This was such an interesting interview! Benjamin Ryan has been covering infectious disease and LGBTQ health for two decades. We talk about the positive changes we can see in public health today as a result of grassroots work during the HIV/AIDS crisis, as well as the need to do more education about the monkeypox crisis, health disinformation and its impact in the LGBTQ communities.
Listen to the podcast at the audio link below or on streaming services such as Spotify, Stitcher or iTunes.
Benjamin Ryan is an independent science reporter who has been covering infectious disease and LGBTQ health for two decades. He has been covering the monkeypox outbreak for NBC News and has published opeds on the topic in the Washington Post. He also contributes to The New York Times, the Guardian and Thomson Reuters Foundation. You can check him out at @benryanwriter on Twitter or at benryan.net.
I had an amazing conversation with University of Washington virologist Dr Alex Greninger, whose team innovated one of the earliest Covid tests. We talked about how they developed the test; public health policy; the current monkeypox crisis; other viruses & “the 2022 effect”; and the virological and sociological implications of the pandemic since 2020.
Listen to the podcast on the audio link below. Also available on Spotify, Stitcher or iTunes.
Dr Greninger is the Larry Corey Assistant Professor in the Department of Laboratory Medicine and Pathology, Assistant Director of the clinical virology laboratories at the University of Washington Medical Center, and a board-certified clinical pathologist. He earned an MS in Biological Sciences/Immunology from Stanford, a Master’s in Epidemiology from Cambridge, an MD/PhD from University of California San Francisco, and completed his laboratory medicine residency at the University of Washington.
My guest this episode is Alicia Broderick, author of the new book The Autism Industrial Complex: How Branding, Marketing, and Capital Investment Turned Autism Into Big Business. Her book traces the cultural, political, and economic history of autism. We talk about the history of autism services, how industry greed often gets in the way of useful approaches that can help families and some advice for families of newly diagnosed kids on how to find the best approaches and sift through all the hype.
Listen to the podcast by pressing Play on the audio file below. Also available on Spotify, Stitcher or iTunes. Read the transcript at the link below the audio file
In this episode I speak with the amazing Lei Wiley Mydske, founder of the neurodiversity library movement and creator of the Neurodivergent Narwals. We talk about neurodiversity libraries (including how to start one!), community-building, disability justice, activism, hope and more.
Listen to the podcast at the link below. Also available on Spotify, Stitcher or iTunes.
Lei is a writer and artist, creator of the Neurodivergent Narwhals, co-director of neurodiversitylibrary.org, and founder of the neurodiversity library movement. They are the Community Outreach Coordinator at the Autistic Women & Nonbinary Network and a contributor to the group’s anthology “Sincerely, Your Autistic Child”. Lei has presented at a range of conferences and gatherings on autistic advocacy and neurodiversity libraries in the community. Lei is the co-owner of Stanwood Tattoo Company in Stanwood Washington, which also hosts a neurodiversity library.
There were a couple tech glitches in this episode, apologies!
Noncompliant is mostly on hiatus until 2023.
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.
The Noncompliant podcast came out of hiatus this week to talk with autistic advocate Ryan Hendry about Spectrum10K, a currently-proposed project by UK business interests to collect DNA data on autistic children and adults for a database to sell to companies for commercial ventures. Ryan and I discussed the ethical implications of the project and others like it. We also talked about activism being welcoming to new members of the community.
Ryan is a 27 year old Autistic and ADHD advocate from Carrick fergus, Northern Ireland. Whilst Ryan’s advocacy covers a wide range of topics relating to Autism and ADHD, he is particularly focused upon the issues that Autistic People face when finding employment, as well as issues that particularly affect young people between the ages of 16-21.
Anila D’Mello is a cognitive neuroscientist interested in social cognition and language. She is currently a postdoctoral researcher in the Department of Brain and Cognitive Sciences at the Massachusetts Institute of Technology where she uses neuro imaging to examine how the brain learns from previous experiences to inform future behavior. She also uses personalized study designs to promote strengths-based approaches to studying social cognition and language in autism.
Liron Rozenkrantz is a neuroscientist interested in the role of beliefs and expectations on cognition and well-being. She is a postdoctoral researcher at the Simons Center for the Social Brain and conducts her research at the MIT Brain and Cognitive Sciences Department. Liron has been studying perception and cognition in children and adults with autism for the past 7 years. Her current line of research looks at “enhanced rationality” in autism and how autistic individuals seem to be less susceptible to cognitive biases.
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 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 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.
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 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.”