|[image: Neurodiversity flag at Toronto City Hall, April 2019. Photo by Anne Lesserknaus.]|
Anne Borden King
In the summer of 2017, five of us launched an autistic-led advocacy organization in Canada, called Autistics for Autistics (A4A). Our mission was to fight for the rights of autistics to have safe childhoods, communication rights, inclusive schools, trauma-free housing, fair employment, accessible health care and community equality. We centred both children and elders in our work, following the UK model. We took a grassroots approach, eschewing hierarchies in favour of a multifaceted strategy, working to make as much change as we could. What we lacked in funding, resources, and relationships, we’ve made up for in vision and persistence.
In one of our first meetings with a Member of Parliament, she told us that our group “should just represent the autistic adults,” and leave the matter of children’s rights to Ontario’s ABA lobby group. This message was reiterated to me by producers of a television panel and even by some US activists who told us it would be “toxic” to talk about the rights of autistic kids. We ignored this advice (and the turf wars) because we all knew how important it was for us not to ignore the systemic abuse of autistic children in Canada. Our country’s multi-billion dollar system of autism services and charities is built on the residential institution model, putting young children in ABA centres, then into segregated ABA classrooms, then abusive group homes and institutions, sheltered workshops and a lifetime of poverty and second-class citizenship. We knew we were dealing with systemic inequalities that quite simply can’t be parsed.
The ABA industry has been controlling Canada’s autism policymakers like puppets for decades, entrenching an ABA mandate across the provinces and territories. In Ontario, ABA lobbyists persuaded policymakers to make ABA the only publicly funded autism therapy (not even speech language pathology or occupational therapy was funded) from 2001-2019. As well, the ABA lobby pressured lawmakers to make ABA the only form of therapy and personal support allowed in Ontario classrooms (under Public Policy Memorandum 140).
Ontario and some other provinces have continued to operate abusive residential institutions based on the ABA model—despite promises since the 1990s to close them. These institutions are disproportionally filled with racialized and Indigenous children and youth, many who are wards of the state and are developmentally disabled and/or autistic. There are even programs of court-ordered, outpatient ABA for some autistic adults. The ABA industry has been attempting to launch similar systems of dominance other countries. The lesson of Canada is what can happen when a federal government falls sway to the cult-like machinations of this relentless industry.
In the past 4 years, Autistics for Autistics has fought to get residential institutions shut down. We’ve fought to get sheltered workshops closed. We’ve battled for regulation of group homes, which are almost completely unregulated and often run on an abusive, prison-like ABA model. Our members have met with provincial governments to try to end the ABA monopoly in autism funding and policy.
We’ve had some successes: after meeting with the Government of Ontario in 2019, the Government made significant changes. It began funding AAC, OT and SLP for the first time in 18 years and some Members of Parliament are supporting a (currently tabled) Bill, introduced by MPP Michael Coteau, to end the practices of seclusion and restraint in Ontario schools. Federally, when the Government of Canada retained the CAHS (an arm’s-length organization) to consult on its autism policies, we consulted, drawing their attention to the systemic inequalities autistic Canadians face. We also blew the whistle on the federal government’s current MO, a troubling exclusive use of sole-source contracts for autism services and its continuous support for ABA and the funding of new residential institutions instead of independent supported living. We’re awaiting the CAHS’s report with the hope that it will drive federal policy reform.
A4A members have also met with the United Nations and shared our visions for inclusion and human rights—as we have done in our seminars for employers, medical schools (The Autistic Health Access Project) and universities. We have also shared our perspectives as we marched in the streets, counter-protesting antivax events and hate rallies as well as raising the Neurodiversity Flag for the first time at Toronto City Hall (woot!) There is clearly a passion among families and individuals to embrace autistic acceptance and work to build connections and improve our human rights.
But Canadian policy hasn’t caught up. Nowhere is this more clear than in A4A’s email inbox. As the only Canadian organization actively advocating for alternatives to ABA, we get mail. And it is mainly from people who have nowhere else to turn.
Every week our inbox has messages from parents, siblings, grandparents, childcare workers and others, asking: What can we do instead of ABA? How can we get government support for services that are not ABA? How do I play with my autistic child? Are there any schools that don’t do ABA? Are there other province we can move to that don’t have an ABA mandate? My son wants a job and he can’t find one; can you help him? How can I teach my child to self-advocate? Where do I report group-home abuse? Is there any SLP that isn’t located at an ABA centre? Are there guides to help me? Are there government programs that can help my family?
Our members have amazing advice for parents on how to connect with their kids, on communication access and AAC and about alternatives to ABA. But what’s heartbreaking about these emails is how rarely we can actually refer these families to government-supported or funded services that will help them in any meaningful way. The awful truth is we live in a country whose “solutions” include sequestering some autistic children as young as five years of age all alone in remote apartments, with provinces that have rescinded bans on restraint and seclusion despite extreme abuse, where residential institutions refuse to apologize for decades of sexual abuse and systemic torture and where our government will pay $10 million for a so-called “autism” website but won’t raise disability payments so people can afford to buy groceries.
It is devastating to have to write back to a parent that no, there are no public schools in their region that don’t have the ABA mandate, or to refer a family to the “best” disability law firms only to learn that the firm turned down their human rights case on a flimsy excuse. Those of us responding to inbox queries are tasked with conveying the reality that most Canadian “autism” funding doesn’t go to useful projects but rather disappears into the pockets of Sunshine List administrators and BCBAs—and that the legal framework for disability rights in Canada disqualifies developmentally disabled and/or autistic people from access to nearly every protection that’s enshrined under Canada’s disability rights framework.
The requests in our inbox are not unreasonable. And the individuals and families who have reached out can’t understand why our governments won’t do what’s right.
A recent arc of emails symbolizes the problem well. We were contacted by a relative of an adult autistic person in another province who is being held captive in the family’s home by parents using dangerous autism pseudoscience and denying this person communication rights. We contacted the disability law firm in the region, who turned it down due to the firm’s benchmark for cases like this, a benchmark that excludes many I/DD people from accessing its services. We then advised the relative to contact his province’s public guardian’s office. A few weeks later, we got an email from the office of the Public Guardian itself, asking us whether we knew of any resources about phony autism cures—because they were trying to convince the family’s doctor to educate the parents and the doctor didn’t understand why chelation and other abusive therapies shouldn’t be used! We created and sent an annotated bibliography to the Public Guardian. Months have gone by. The situation has not yet changed. Even with several other authorities involved, this man is still not safe or free.
Within just a few years’ time, there’s been a seismic shift in understanding of autism, neurodiversity, and the humanity of autistic people. It has been nothing short of astonishing. The important conversations about change are happening 24/7, among autistic people, parents and allies—often on social media. Researchers and private sector companies are also reaching out to autistic-led groups, eager to learn. But the policy change we’d expect to accompany all this is happening at a snail’s pace. In Canada, people’s life chances are being forever altered by the lack of political will to make the changes that autistic people and families need now.
Autistic advocates persevere, though. We’re sort of built to do that, eh? It has been that level of persistence, combined with the support of some amazing allies, that’s slowly bringing the shift in public understandings of autism into the realm of policy. It is meaningful that we are at least finally being invited to be a part of the policy conversation. But after we leave the consultations, the Zoom conferences and the break-out rooms—what will policymakers choose? I hope they’ll choose to invest their energy into developing rights legislation and policy solutions that respect the human rights of autistics. I hope that we are finally reaching the tipping point in Canada. As I pass inbox duties on to the next member of the Board who takes my place, I hope it will become easier to answer the emails.