On March 30, a representative of A4A appeared before the Senate of Canada, on their invitation, to present about federal autism policy. As well, Vivian Ly from Autistics United presented. A video of the presentations, and question period, is here [transcripts coming soon]
After the presentation, we also sent them some supporting documents, including this.
An Opportunity to Reshape Canada’s Autism Policy Landscape
To: The SOCI Committee
Date: March 31, 2022
The neurodiversity paradigm is an exciting development, where over the past few decades, autistic people have found each other and created community and advocacy groups. In the process, the neurodiversity movement has helped hundreds of thousands of families find connection and peace through better understanding each other.
The neurodiversity movement is a positive force in the world. By engaging our groups and thinking differently about autism policy, you are a part of the neurodiversity movement.
Addressing the “double empathy problem”
While some believe a false myth that autistic people lack empathy, in truth our society has been dealing with, as Damian Milton of Kent University famously put it, a “double empathy problem.” Autistic people feel misunderstood in the ways we communicate, move and perceive the sensory world. (Research bears this out; see citations in this article). Regardless of support needs, autistic people have a shared bond of trying to navigate a world that misunderstands, bullies and often segregates us. As advocates, we push back against the messages we often hear, beginning in early childhood, that we are a disappointment, a tragedy or a burden to our families.
These messages are amplified when other forms of marginalization are involved, such as being Black, Indigenous or a person of Colour, being low-income, being queer, being non-speaking, being intellectually disabled or having another disability.
Autistic people of all intersectional identities and our families want something better–and we’ve been working for it.
Autistic people of all support needs ought to be validated, respected and have autonomy and safety in their lives. It’s not a big demand, if you think about it. Wanting to be treated with respect, to be safe at school and home and to feel valued are crucial to having a quality of life and basic rights in our society.
Canada’s institutional legacy
So, why don’t autistic and/or intellectually disabled people have these rights and protections in Canada?
In our meta-view, it is because the neurodiversity paradigm threatens the financial interests of organizations that profit from the older perspectives on autism–perspectives about us that were forged in the era of residential institutions. While most (not all) residential institutions for intellectually disabled people have been closed in Canada, the legacy of institutionalization continues in the methods and approach of many early childhood intervention programs, segregated classrooms, group homes and sheltered workshops.
The legacy of Canada’s residential institutions is also ever-present in many autism charities and services organizations. These groups have a lot of money and power—power and funding that they will lose when the paradigm shifts to neurodiversity. Disability access/inclusion is diffuse and community-driven, so many of these groups will not be able to adapt, because their business model is based on othering and segregating us within their services. That their model is entrenched in cultural ideas about autism (which they also tend to reinforce) is probably why autistic people & groups are still marginalized in policy, services & media.
A policy crossroads
The good news is that while change comes slowly, it is inevitable. The neurodiversity paradigm is going to eventually win the long game. Autistic people and our families are sharing a moral imperative that’s ultimately too compelling to ignore: we deserve the same rights and protections under the law that other Canadians have.
Policymakers are now at a crossroads where they can decide: dig in their heels and defend our country’s legacy of segregation or become a part of the future. At A4A, we are glad to see that the Senate is interested in exploring change.
One of the first steps is to look at building a better procedural model for autism funding.
(Because we’re time-constrained in this report, we will keep it brief, below.)
Background into the problem
In 2018-2020, Autistics for Autistics reviewed publicly-available databases of government contracts and filed an Access to Information request to PHAC. We found that millions of dollars in federal appropriations for autism-related projects had not undergone competitive processes and the largest projects did not even have records of project assessment. Some of the single-source contracts did not even appear on the government’s funding transparency (public) databases.
For example, in the 2018-19 funding cycle, the Government granted $10.9 million to a consortium including the Pacific Autism Family Network and the Miriam Foundation in an no-bid contract for an autism information website with PAFN’s brand on it. (We discuss the problems with this project in our Comments on Federal Dissemination of Autism Information.) Another $10 million was given to the PAFN to use for mini-grants to itself, to the Miriam Foundation and 4 other non-profits to set up “information hubs”. There is little publicly-available information about what the hubs are or how this funding was used.
In our research, we also found there is a circular nature to the charities and non-profits who tend to be involved in federal autism funding (and national initiatives to garner increases to autism funding). For example, the Vice Chair of the Executive Board for CASDA (which supports the National Autism Strategy) is also the President of Autism Speaks Canada. Autism Speaks is a Capital Lead Partner at PAFN and a Collaborator of CASDA. The more we looked at these relationships, the more concerned we became that funding may be determined by a closed set of relationships or even cemented through policy, without safeguards to support newer organizations and approaches that families want.
Today, more than 90 percent of federal housing funding in the autism/intellectual disability sector still goes towards segregated housing. While disability legislation guarantees the rights of persons with disabilities to choose their residence on an equal basis with others, this right is not applied to autistic and/or intellectually disabled individuals. Segregated housing benefits large charities and developers–and bring jobs to some ridings–but it also runs counter to the ideals of community inclusion for disabled people. It also contradicts best practices in other jurisdictions such as the US, where independent supported living (people having their own apartment, choosing their roommate and having supports as needed) are a proven win-win for individuals and communities.
The Autism Investor Summit (yes, that is a thing), estimated in 2019 that autism services cost Americans $250 billion in 2018, with much of that money funnelled into ABA and segregated housing programs. Canada is similar. (Interestingly, ABA models are not funded in the UK or most other countries.) We are people, though, and warehousing us should not be a multi-billion dollar industry, with entrenched providers and private equity groups creating barriers to policies focusing on rights, instead of profits. Decisions are not being made because they’re the best choices, but simply to give business interests what they want.
What would happen if we flip the narrative? What if the Government looks beyond the autism industry’s oldest players? What if the Government explores best practices in other jurisdictions that are equitable and improve quality of life for autistic people and our families?
An Opportunity for Change
A new Framework, such as Bill S-203, poses an opportunity to change the autism policy conversation and bring Canadian autism policy to a place where there is greater rigor; more science; meaningful assessments and data collection; and better use of funding–all within a disability rights and inclusion framework.
A new framework can also establish a commitment to build capacity for authorities to take action to stop autism disinformation and pseudoscientific practices that threaten the health and safety of autistic children and vulnerable adults. Canada needs regulation and enforcement, involving multiple authorities working together, to stop the flow of health disinformation. (Please see report, attached.)
A new autism policy framework can draw upon work by the Governments of Chile, England, Ireland, New Zealand, Scotland and the US (via the Inter-Agency Autism Committee, for example) among other countries. All are increasingly focusing on inclusion and quality of life for autistic people, rather than trying to “fix” autistic people.
Our hope is that a new framework will help to ensure policymakers acknowledge autistic Canadians as individuals with the right to autonomy and safety like other disabled Canadians.
Finally, we would recommend the Autistic Self Advocacy’s new report on autism services: “For Whose Benefit? Evidence, Ethics, and Effectiveness of Autism Interventions”. It includes a section on Ethical Standards and Guidance for autism services and policy and it begins:
“Autistic people are people. We are human beings with thoughts, feelings, wants, needs, and dreams. We experience pain and joy, just like non-autistic people do. Our internal experiences and inner lives are important, even if they are different from those of non-autistic people. We have the same human rights as non-autistic people. We may struggle with things that non-autistic people do not but this does not make us less human. Autism is not a justification to abuse us or subject us to harmful therapies against our will.
“This statement is true of all autistic people. It is true of autistic children. It is true of autistic adults. It is true of autistic people of colour. It is true of autistic women and non-binary people. It is true of non-speaking autistic people. It is true of autistic people with intellectual disabilities. It is true of physically disabled autistic people. It is true of autistic people with mental health disabilities. It is true of autistic survivors of seclusion, restraint, institutionalization, and forced/coerced/involuntary treatment. It is true of any and all multiply marginalized autistic people. It is true of all autistic people. There is no group of autistic people that is okay to abuse or harm because they are autistic or because of other parts of their identity.”
Autistic-led advocacy groups and allied group have a lot to share about how to make services that work for us. Please feel free to reach out any time.