For this episode, I interviewed 23-year-old comedian Michael McCreary. Listen to the audio link below
(for iTunes and Stitcher links, see the bottom of this post)
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.
This week I interviewed Ryan Armstrong of the pseudoscience watchdog group Bad Science Watch Canada.
Listen to the interview at the link below or via the iTunes and Stitcher links at the end of this post.
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 the US, the Health Fraud and Consumer Outreach Branch of the Food and Drug Administration (FDA) has engaged in regulatory action on matters including products tainted with active drug ingredients such as anabolic steroids; metals like lead and mercury; and common allergens. In a recent case, the use of Hyland’s Teething Tablets was found to be associated with belladonna toxicity in infants. Between 2007 and 2016, the FDA issued warnings about unapproved pharmaceutical ingredients in 776 dietary supplements; however, onereportnotes that less than half of these led to voluntary recalls.
In addition to supplements, the FDA has also cracked down on off-label use of prescription drugs, such as the off-label use and sale ofchelating agentsto “cure” autism. Like the FDA, the National Health Services in the UK has created a list of “Do Not Do Recommendations,” including “Do not use chelation for the management of core symptoms of autism in adults”.
There is no similar Do Not Do list in Canada. Other than issuingwarningsagainst the sale of MMS (here, at least one case has been prosecuted by the Crown), we don’t hear very much about Health Canada engaging in regulatory actions against supplement makers for integrity issues. Neither do we hear about Health Canada taking action on off-label use, a matter that is generally “handled” by self-regulating colleges.
I think Health Canada needs to take a page from US and UK regulators, for two reasons.
1. Contamination of natural health products is a serious health and safety issue.
When University of Guelph researchers tested44 bottles of popular supplements sold by 12 companies, they found that many were mixed–or replaced entirely–by cheap fillers like soybean, wheat and rice, which were not listed on the label. Still others contained walnut, a common allergen, also not listed on the label. Bottles labeled “echinacea” were found to contain a ground up bitter weed, Parthenium hysterophorus, an invasive plant found in India and Australia that has been linked to rashes and stomach illness. Two bottles labeled as St. John’s wort were entirely comprised of fillers, with no St John’s Wort in the capsules at all. All in all, one-thirdshowed “outright substitution, meaning there was no trace of the plant advertised on the bottle.”
As David Schardt, a senior nutritionist at the Center for Science in the Public Interest, an advocacy group. “Given these results, it’s hard to recommend any herbal supplements to consumers.” It’s not just lack of efficacy that’s the concern, but risk of illness or allergic reaction, or other reaction (as in the case of supplements tainted by steroids orViagra). As Chris MacDonald of the Ted Rogers School of Management writes: “Unlike homeopathic remedies, which (unless adulterated) generally contain no active ingredients at all, herbal remedies can have actual biological effects.”
When products sold at GNC (US) were tested by an expert in DNA barcoding technology, just 21 percent of the test results had DNA from the plants listed on the labels. “In many cases, unlisted contaminants were the only plant material found in the product samples.” Based on DNA testing, the New York State Attorney General’s office accused four major retailers of “selling fraudulent and potentially dangerous herbal supplements and demanded that they remove the products from their shelves.” Other actions have followed this one.
And last year, a report in the Journal of the American Medical Association concluded that: “Active pharmaceuticals continue to be identified in dietary supplements… even after FDA warnings. The drug ingredients in these dietary supplements have the potential to cause serious adverse health effects.”
2. Self-regulating bodies in Canada do not appear to be adequately regulating off-label use of pharmaceuticals such as chelating drugs. A Do Not Do/Use list would help provide guidance as we seek a regulatory framework that enforces the use of these products.
The system of professional self-regulation–where members of a given profession comprise the complaint body when members of the public have a grievance about a medical practitioner–is flawed. In some cases, self-regulating colleges are not taking enforcement action when legitimate complaints arise about the practices of their members. A self-regulating review board may be made up of two professionals (peers who often know the respondent professionally) and one member of the public. Rarely if ever are ethicists or other adjudicators involved. Judgements often come out in favour of the professional without due diligenceor drag outfor years, even decades.
As Ryan notes: “The current system has been constructed largely on the assumption that the majority of a given profession is well-meaning and ethical and that their organization into a regulatory body would help weed out the outliers and bad actors. … [W]hat has not been taken into account is the existence of cultural delusions that can possess large communities within a profession or even the entirety of a profession.
“We need an independent entity that is science-based and ideally can make judgements on diagnostic and therapeutic procedures.”
In addition to regulatory issues, Ryan and I discussed the nuances of informed consent, as well as 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!!
Listen to the full podcast at the audio link below (Stitcher and iTunes links at the end of this post.):
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!
The basic premise that “kids can progress and be happy without having to change who they are fundamentally,” should be intuitive. But this idea runs counter to most prevailing public-funded models of autism services. FDM is a service informed by the population it serves, scalable to a spectrum of needs and environments, on an accessible and portable platform, at a much lower cost than standard services, with satisfied users – and it’s effective. It also contains a crucial element of DIY, so that families and educators can integrate the strategies into their environments without a lot of overhead, handlers, case workers, supervisors, etc.
Oswin and I talk about AAC (including the importance of introducing it early) and FDM’s methods for introducing AAC, both to the user and to their parents. We also talk about communication in general, compliance versus connection and other concepts that represent the really seismic shift on the horizon for autism services (dust off your resumes, BCBAs, you’re going to need a new gig soon…)
Oswin came to the idea of FDM organically, based on her experiences as a parent. “As I look at everything that I’ve ever been given for my own kids, I always see this ‘how are we going to make them look a certain way,’ [approach] but never does it come out that people are looking for happiness.” And that is a key element of FDM: a fulfilled life for autistic/neurodivergent people. It offers easy-to-understand, concrete ways to set up a home or school for communication access and sensory-friendly spaces that also destigmatize access needs. It replaces the old idea of hand over hand learning to make it about hand under hand learning, assuming competence both in the children and in the families as they connect towards a common goal.
Oswin says: “[parents] feel good about what they’ve done and I’m blown away by how many teachers, SLPs and OTs are coming away saying ‘you have fundamentally changed the way I do therapy.’ And that is so amazing for me, because that’s the whole point. To recognize that [autistic/ND people] have our own needs and our own development and none of this means that we can’t learn, or that we need to be changed.”
Listen to the podcast by pressing Play on the audio link below.
Full Transcript, iTunes and Stitcher links at the end of this post.
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 programs that promote 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.”
In the podcast, we talk 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 talk about the present day situation of institutions, the fight for fair housing and integration in society, how the strides made by other disabled communities haven’t been replicated for the developmentally disabled community–such as being able to make choices about caregivers or where and how care and services are delivered. We discuss segregated education and what access and support really mean in the context of developmental disability. As Cal said, access is not just about “getting in the room”, people also need supports once they get the access to the room.
Currently there are many people who want to live in the community that, due to bureaucracy, are steered towards living in institutions. The Medicaid system in the US is stacked towards placing people who need services into institutions rather than living in the community. If you need supports, too often the “best” way to get supports is to live in an institution. In most US states, people have the legal right to be in a nursing home or other institution “but not an equivalent right to service in the community” with supports.
“So either you hang on with loved ones providing the care you need –and as families age, this gets harder and harder –or you have to go into an institution, Or you die. Those are really your choices..”
Cal and I also discussed wandering, literal and metaphoric, and its role in learning and growing. The ability to wander is essential to development and often denied to autistic youth, especially in the special education setting. How different could things be if the desire to explore were honoured in all children?
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 gifts that Cal brings to the movement. Thank you, Cal!
To listen to the podcast on this site, click on the link below (Links to Stitcher and iTunes at the end of this post).
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!
While some may think that teacher violence is the last resort, it is quite often the first resort in special education classrooms that lack transparency. Where there is no transparency, abuse can go unchecked, especially with students who may not be able to articulate what happens to them, or may not be believed if they do.
In Ontario, it is common practice for a special education teacher to keep parents out of the classroom space at all times, even for pickup and dropoff. Teachers’ unions across Canada fight against cameras-in-classrooms as well. Their representatives argue that cameras violate the privacy of students and that parent presence is a “distraction from learning”. But these arguments are a smokescreen– because decades of research show that parent and community involvement is healthy for all learners, whether in mainstream or segregated classrooms and that cameras-in-classrooms are a deterrent for violence, as well as a crucial means of documenting it.
In Ontario, each school board has its own method for “tracking” isolations, restraint and school exclusions. This unfortunately means that when human rights and inclusion advocates want to document problems and advocate for change, we are stymied by entirely different, highly relative and frankly skewed data sets. For example, in many districts in Ontario, a Board’s definition of an “exclusion” does not include several types of school exclusion that any reasonable person would define as such.
In researching A4A’s Inclusion Recommendations to the Ontario Ministry of Education, I was frustrated by this and repeatedly heard from inclusion advocates: “we need to fight for universal codes and tracking to make our case.” We see the same inconsistencies and dearth of real data when we look at uses of restraint and seclusion in group residential facilities as well. Within a bureaucracy that will not move without hard data, we’re left to rely on anecdotal information, the kinds of heartbreaking stories that advocates like Bruce hear every day. We know that it is happening every day and we know that the real numbers are obscured by the very systems that should be designed to track it.
What Inclusion Alberta did in response to this problem was remarkable: as Bruce describes in the interview, they created their own study, surveying interviewing hundreds or parents across the province to make the case for human rights accountability in schools. The end result of their work contributed to a complete ban on seclusion in Alberta schools, signed into effect by the Premier of Alberta. The ban takes full effect on September 1, 2019. Their story just goes to show that sometimes if you want something done right, you have to do it yourself.
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.
Listen to the podcast here at the audio link below (To listen on Stitcher or iTunes, see the links at the end of this post).
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. As she is works with the kids, she is also modeling for the parents in how to relate to their kids, approaching projects and goals with a crucial assessment question: “Is this about a critical life skill, is it a safety skill, or is this just an NT social expectation?”
Through the mentorships, kids get to try new things and experience the city in a way that is on their terms, with someone who is receptive and has a deep well of common experiences to draw upon. Raya says:
“What I hope the kids get out of it is it gives them the tools to advocate for themselves and their needs, to find pride in their autistic identity and to have greater access to their communities and feel comfortable with their way of being in the world.”
We also talked about disclosing one’s identity as autistic to clients, an issue many autistic child and youth care workers (CYCs) and teachers face. The discussion turned to Raya’s early experience working in the school system as an CYC and the problems within the school. She sums it up like this: “Super cool kid, lots of potential, utterly failed by the school system.” The school did not have accessible design, was not open to even basic accommodation and when there were difficulties, the student himself was seen as the “problem”.
Raya’s excellent recommendations for how to make classrooms accessible point to the need for schools to consult with #actuallyautistic people when developing accessible design and inclusion initiatives. Her experience in dealing with the school as a CYC is a concrete reminder of what research tells us as well: what holds administrations back from inclusion isn’t dollars, it’s attitude. Inclusion programs and accessible design work when there is an attitude of good faith from administration–a willingness to learn and change. In future episodes, we will be looking at successful inclusion programs, how they got there and why they work!
We need more mentorship like Raya’s that brings autistic kids together around shared interests and helps them through life transitions as kids, tweens, teens and young adults. Raya mentors my son and it such a wonderful, relaxing experience when she rings our doorbell and they go off on an adventure on their own or with other autistic kids. I always know that he is in an emotional space where he can be authentically himself without stigma.
Many programs and classes for autistic youth are not designed to allow them to relate to one another, but rather to teach them so-called “social skills.” Those classes, through a heavily-mediated, hand-over-hand style, end up feeling awkward and inauthentic, and stymie friendship efforts because the kids are not allowed to connect on their own terms. Many “meetups” led by autism agencies even have behaviour performance charts at the front of the room, ranking the children’s “behaviour” instead of promoting true community and connection.
Autistic mentoring programs and interest groups push back against this approach and show clearly that autistic kids, no matter their age, should not have to wait until adulthood to find their community. It is here. The most helpful thing our policymakers could do is to stop prioritizing “clinical” social groups for autistic kids and instead support getting them out into the real world with #actuallyautistic mentors!
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.