“Canadian autism policy needs to move from a charity perspective to a rights perspective”: Autistic-led groups present before the Canadian Senate

In March 2022, A4A member Anne Borden King delivered a speech before the Canadian Senate on the need for a paradigm shift in federal autism policy. Vivian Ly of Autistics United Canada also presented. Both speeches were followed by discussion with Senators.

See/hear Anne’s speech here
Read the transcript of the full hearing here (starts about 3 pages in)

Anne says: “The Senators were so engaged, thoughtful and respectful of us both and the proceedings. I’m looking forward to seeing what may come of these hearings.”

Speech Text

Good afternoon, esteemed members of the Canadian Senate. It is an honour to be here with you.

I’m Anne Borden King. I’m here representing Autistics for Autistics. We’re a national autistic-led advocacy group. We formed in 2018 because we realized that, in Canada, it is mostly non-autistic people who have been leading the autism policy discussion—policy about us, without us.

For decades, the Government of Canada has granted hundreds of millions in sole-source contracts to autism agencies with no RFPs, no competition, no follow-up, no assessment. The cheques get cut and everyone attends the charity gala, or claps when they break ground on a new segregated “home” for autistic men… on the edge of town. Did you know that more than 90 percent of Canadian federal housing funding in this sector still goes to segregated group homes? Even though in the US, it’s been shown that a different model, supported independent living is better for everyone.

We’re hopeful, today, that this new framework will bring a policy shift that keeps up with the changes in the rest of the world. Our Government needs to pivot from a charity perspective to a rights perspective.

Autistic people, like other disabled people, have rights. In fact, our rights are enshrined in the United Nations Convention on the Rights of People With Disabilities. In Chile, the Congress has just approved article 26 to its new Constitution which states and I quote “The State recognizes neurodiversity and neurodivergent people, their right to autonomy and self-determination.” end quote.

In the US, autistic-led groups are directly in dialogue with the Biden administration as part of its disability policy team. The Inter-Agency Autism Coordinating Committee (IACC) is a diverse and rigorous group, comprised of federal and public members including members of autistic-led groups.

Meanwhile in Canada, autistic people are not even included in federal disability rights legislation. Autism is in a policy silo. So far, Canadian policy hasn’t been about solving our problems…it’s been framing autistic people as if we are the problem.

In the current draft of the Framework, autism is called an “impairing disorder” with “challenges” to employment and housing. Our first request is that these euphemisms be dropped and the words disability and access barriers be the replacements. Schools, workplaces and housing have the responsibility to change the environment to meet the needs of disabled people, including autistic people.

Our Access to Information requests revealed that over the past decade, none of the projects overseen by P.H.A.C. were RFP’d. I’d give the example of the 10 million dollar website that was not put out to tender but rather given to an autism-related company that is now doing even more assessments because its traffic is so low. There are many other examples of this kind of inefficient use of funds.

So our second request is that the Framework require a competitive funding environment, assess the ROI for projects and require those RFPs.

Our third request is that you add to the Framework that the Government needs to independently collect data.

I’m glad to see a line item on data, item 2c, but it is dangerously vague. Current policy is based on biased and unreliable data provide by lobby groups. I would point to the interest group CASDA’s 2018 national quote “needs survey,” where only 2.4 percent of the survey participants were even autistic. 2.4 percent. With respect, this kind of data should not inform policy. Nor should industry white papers be considered an “evidence base” of “best practices”.  In contrast, consider the US government’s independent data collection via the IACC and the work of the UK standards council in independently evaluating the claims of the ABA industry, for example.

Like all disabled people, autistic Canadians should have a right to access–to communication such as AAC; to inclusive schools and workplaces; to health care; and housing in the community.

In conclusion, we would ask that the Framework include language that enshrines these rights. Think of the Chilean Constitution, acknowledging neurodiverse people’s rights. Think of our government’s approach to other disabilities and apply it to this document. We need rigorous policy that’s focused on quality of life. It’s time for a paradigm shift.

Thank you.

 

Our letter to the Canadian Senate: An Opportunity to Reshape Canada’s Autism Policy Landscape

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

Overview
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.

Thanks!

Our statement on Toronto’s 30-year plan: City must prioritize supported independent living for autistic & intellectually disabled residents

On February 24, 2022, one of our members spoke to the accessibility-focused meeting of the City of Toronto’s Our Plan team–the City’s new 30-year plan for urban planning, sustainability and quality of life in the Six. Here is her statement:

I’m Anne Borden King from Autistics for Autistics Ontario, the autistic-led advocacy group. We are not a parent group, we’re a group that’s led by and run completely by autistic people. We’re thankful to the city for recognizing the importance of neurodiversity and inclusion. I’m going to talk today about housing access, since segregated housing approaches really circumscribe the entire lifetimes of many autistic and intellectually disabled people in Toronto.

When inclusion committees talk about accessible housing, they pretty much almost always forget or leave out intellectually disabled people. In fact, the Ontario Auditor General found that 89 percent of housing funds in this sector go towards segregated housing, where developers get funds to build things like houses on remote streets where autistic and intellectually disabled people are grouped, segregated from regular community life.

These residents have no choices about even basic daily decisions. Families place their adult children in these group homes not because they want to, but because they’re told it’s their only choice. These spaces are not regulated or meaningfully inspected–and a lot of abuse happens there, including by the people who work there, since security background checks of staffers are not required by law. Sometimes people who work there end up being jailed for violence against the residents.

This is not safe, accessible housing. This is institutional living and it has no place in Toronto in 2022.

We know there is another way because programs in other cities are doing it, where autistic and intellectually disabled people have their own apartment, choose their own roommate and have their own support workers, as many people with other disabilities can. Programs in Ottawa and in the US, for example, have been shown to work well and benefit intellectually disabled people because they can live in the community instead of being segregated. This also benefits the community!

Toronto’s government can do something. Our City can make its commitment clear: that institutions and group homes are not the answer, and commit to replacing them with supported independent living, with a clear deadline for doing so. It can develop pilot programs based on best practices, where intellectually disabled people can have the choices they deserve. The City can, in its inclusion documents, make it a mandate–instead of segregated units being built, to prioritize supported independent living– for people with intellectual disabilities.

Please consider this and we hope you’ll reach out to Autistics for Autistics to access our inclusion reports and recommendations. Thank you.

 

“This is our lane”: Autistics speak out against antivax rallies in Ottawa, Toronto

Image by Glacier Medical Associates

Autistics for Autistics unequivocally condemns the antivaccine convoy rallies in Toronto, Ottawa and elsewhere in Canada. The convoys, organized by Canada’s white supremacy movement and largely funded by big money from outside of Canada, are designed to create chaos and spread hate.

We have members who are Black, Indigenous and/or People of Colour who are targets of the racist terrorism that drives the rallies. Our members who live in downtown Ottawa and Toronto are afraid to leave their houses because they could be assaulted and harassed by racist ralliers. No, it’s not a few “bad apples” waving nazi flags—the entire protest is predicated on white supremacist ideology.

The modern antivax movement is fueled by the lie that “vaccines cause autism.” For the past 2 decades, antivaxxers have been arguing it’s better to revive deadly, vaccine-preventable illnesses than to have an autistic child. This ideology leads to the eugenics belief that autistic people should not even be born. It also relates to the antivax view that during pandemics disabled people and elders should be forced into isolation and left to die, rather than being cared for through simple public health measures like vaccines.

Vaccine mandates are the Trojan horse of the truckers’ rallies. Rally leaders are using the rhetoric of “freedom, rights and liberties” to normalize ideologies that dehumanize disabled people and elders—and to advance their agenda of racism and authoritarian ideology.

We condemn the federal and provincial politicians who have been cynically courting votes from the rally-goers. Equally complicit are the politicians and law enforcement officials who have been chillingly silent–refusing to take basic actions such as towing trucks and making arrests.

While we’ve been told we should “see the many sides” of the rallies, be quiet and “stay in our lane,” we disagree. As autistic people, this is our lane.

Vaccines save lives. Vaccines do not cause autism.

Our 2021 Annual Report on Advocacy

As the pandemic persisted, we continued to do the bulk of our advocacy online. Some highlights from 2021:

  • We continued our groundbreaking Autistic Health Outreach Project, educating Canadian medical students about autistic health access needs.
  • We collaborated with the Centre for Independent Living Toronto to improve vaccine access for autistic/disabled people through the Disability Vaccine Outreach Initiative.
  • We collaborated with Independent Living Canada to work towards ending abusive long-term care and institutional housing.
  • We led the annual Disability Day of Mourning in Ontario, remembering those who were murdered by their parents/caregivers and saying: Never Again.
  • We consulted with governments internationally, nationally and provincially on human rights issues in education, housing, school and health care.
  • We continued to advocate for a ban on Applied Behaviour Analysis (ABA).
  • We educated employers on inclusive supports and communication access for autistic people through our Autistic At Work presentation.
  • We proudly supported Land Back, Black Lives Matter, trans rights, immigrant rights, health care rights, housing rights, climate justice and other social justice issues.

Read more about our 2021-2022 projects: A4A 2021 Annual Report