Tag: autism policy

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

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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.

 

Election 2022: Ontario NDP’s autism disinformation campaign

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Image 1. Source: Chris Bonello, online survey of 11,000+, including 7,491 autistics, published 2022

From a leaked memo by the Ontario NDP leadership to its candidates, May 2022:

“We fully support ABA and IBI therapies for people that choose that. We know there’s a small group that opposes them. We use person-first language and say ‘people with autism,’ we do not use the word ‘autistic.’ We know there are people who disagree with that; the majority of people with autism and their families prefer person-first language.” [emphasis added]

It is election season in Ontario–and according to the above memo and others, Ontario’s New Democratic Party is strong-arming its candidates to spread disinformation about ABA, a controversial autism therapy developed by a creator of a popular gay conversion therapy.

Quick fact checks: Despite the NDP’s claim that only “a small group” opposes ABA, a recent survey of more than 7,000 autistic people found that less than 4 percent of autistic people support ABA. (See Image 1, above.) And although the NDP claims “a majority” prefer the term person with autism, a full 91 percent of autistics polled use the term “autistic” to describe themselves. (See Image 2, below.)

Ontario’s NDP: In the pocket of the ABA lobby

The NDP is misrepresenting our community not because their leadership is ignorant about autistic people. Rather, the NDP’s autism talking points are part of a calculated disinformation campaign that seeks to re-establish ABA dominance in provincial autism funding.

In one of several memos leaked to us by fed-up party members, NDP’s executive team instructed candidates to advocate for the removal of all funding caps on ABA and to claim that such a dangerous policy would be preferred by “people with autism.” Here the NDP is trying (and failing) to discredit autistic groups through rhetoric–criticizing our community’s preferred ways of referring to ourselves to make autistic adults seem like “outsiders” in the policy discussion.

The NDP’s executive team also told candidates to claim that “important developmental windows closed for thousands of children” when the current Government put reasonable funding caps on ABA centres in order to newly allow funding for AAC, speech therapy and occupational therapy–choices that Ontario families overwhelmingly wanted. According to the NDP talking points, the only way to help kids is through a service monopoly by the ABA industry.

“Some children’s developmental potential is slipping away,” the NDP document claims, stating that caps on ABA therapy hours could mean: “opportunity [for children] to develop the ability communicate how they feel, or to stop self-harming behaviour, will be lost forever.” The industry’s persuasive technique goes back to the rhetoric of ABA’s founder, O Ivor Lovaas, a master manipulator who claimed in 1974 that children would have to be chained to beds unless he tortured them with “aversives” that including electroshocking, slapping and denying food and water to them. 

The ABA lobby in Ontario

At first glance, it is surprising that the NDP, a typically progressive party, supports ABA and IBI (the intensive form of ABA). Many centres are operated by private equity firms selling privately-managed “care” at an exorbitant cost. These segregated settings are known for human rights violations against the most vulnerable: developmentally disabled children, many of whom are Black, Indigenous and children of colour. ABA and IBI centres fall within a spectrum of private-equity brokered partnerships that include overcrowded, violent group homes and the disease-and-neglect-ridden long term care facilities that are the shame of our province.

But money talks. In Ontario, the IBI/ABA industry is a powerful interest group that has used its persuasive powers (including a contract with the Bay Street lobbying firm Pathway Group) to sell MPPs on the pork-barrel benefits of supporting IBI/ABA centres–which segregate autistic and intellectually disabled children from their peers–in their districts. The Ontario NDP’s vested interests are reflected in its talking points, which for years have shown stalwart support for cutting funds to occupational therapy, AAC and speech therapy in favour of an ABA monopoly in our province.

The ABA industry claims itself to be the “only evidence-based” way to help autistic children. That claim is patently false and deeply offensive. Autistic children deserve kindness and acceptance–not cruel behaviourist pseudoscience.

Autistic advocates: Fighting for policy reform

In Ontario, autistic and/or developmentally disabled children and their families were the victims of the ABA monopoly for years. In fact, from 2003 until 2018, ABA was the only publicly-funded autism therapy in Ontario, with parents paying out of pocket for speech and occupational therapies, as well as AAC systems for non-speakers and newer approaches like relational development therapy (RDI). Both the Liberals and the NDP supported the continued de-funding of these choices, forcing families to pay tens of thousands of dollars out of pocket for proven supports and therapies.

Autistic individuals and groups have met with Ontario NDP representatives over the years and provided clear documentation supporting AAC, speech and occupational therapies, as well as documentation that ABA is not an evidence-based approach. There is also a party group (Neurodivergent NDP) with autistic members. The NDP’s embattled Disability Coalition also has neurodivergent members.

Some in these groups have faced harassment by the ABA lobby; others have reported being treated unfairly by provincial NDP leadership. Many of our members have expressed that although they support the NDP’s views on other issues, they cannot in good conscience vote for a party that collaborates with the ABA industry and remains so unwelcoming to autistic voices.

When autistic people have shared our concerns about autism policy with NDP representatives, we’ve often had to listen to statements like “most children want ABA,” “you can only speak about adults’ rights.”

As systems thinkers, we know these messages are attempts by the party to regain control of the autism policy narrative. The NDP has chosen to ignore the broader conversations in policy circles on neurodiversity, equity and consultation–but they do so at their own peril. The fact is the neurodiversity movement now has a place in policy–and we’re here to stay.

Change is coming–despite the ABA lobby

In 2018 and 2019, our organization met with every provincial party at Queen’s Park. We were invited by a Liberal MPP, Michael Coteau, to attend the reading of Bill 160, which called for an end to abusive restraints and seclusion in Ontario schools (a crucial bill, currently stalled, that NDP has not supported). We also met with Green Party leader Mike Schreiner, who was supportive and inquisitive about our autism policy ideas. We met with Progressive Conservative MPPs to talk about broadening the scope of autism services to allow more choice. The Government delivered a more equitable autism services program—despite the NDP opposing it.

While other provincial parties are broadening their visions of autism policy, the Ontario NDP has decided to fall back on an old playbook, describing ABA as a saviour to families and portraying the neurodiversity movement (which is worldwide) as if it were a small cadre of local cranks. But the truth will prevail. Party members are never as loyal as their leadership would like—and they grow weary of being ordered to lie. There is neither peace nor unity in the Ontario NDP, nor is there transparency. This does not bode well for the party in the upcoming election.

Image 2

Source: Chris Bonello, online survey of 11,000+, including 7,491 autistics, published 2022

 

Note: Autistics for Autistics is a non-partisan group. We work with individual politicians in the interest of human rights for autistic children and adults. Likewise, we also speak out against any politician or party that opposes disability rights and equitable services for autistic people.

 

 

 

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

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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!

Canada’s Autistic-led organization oppose the National Autism Strategy: Here’s why

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For more than two years, Canada’s national autistic-led advocacy groups have actively opposed the proposed National Autism Strategy, which has been pushed by CASDA, a lobby group representing Autism $peaks and several large “autism” providers. When we reached out to the federal agencies and politicians involved, they ghosted us and ignored our concerns. This treatment of autistic people, who are the end-users of autism services, is shameful.

Canada’s government has participated in decades of corrupt and abusive policy decisions that have harmed autistic and intellectually disabled people. Their embrace of CASDA’s National Autism Strategy is yet another terrible chapter in this legacy of stigmatization and neglect.

Who we are

Canada has two national autistic self-advocacy groups: Autistics United Canada and Autistics for Autistics.

  • Our groups are led by autistic people, representing the views of autistics. Together, AUC and A4A represent thousands of autistic people in regions across Canada.
  • We have consulted with the United Nations, the Canadian Academy of Health Sciences and many other groups on autism policy.
  • We also present to employers, medical schools and service agencies on human rights, inclusion and neurodiversity.

Current Canadian autism policy: Designed for failure

Using the same playbook as the  WE scandal, Canada’s leadership currently allocates hundreds of million$ for “autism” programs with:

  • No competitive bidding process/RFPs
  • No vetting of the agencies receiving the funds
  • No study to determine whether the service is needed
  • No independent standards and practices to measure efficacy or outcomes

Current Canadian autism policy: Throwing money down a hole

  • The AIDE project, a sole-source contract for $10 million that the government granted to Pacific Autism Family Network (PAFN) and the Miriam Foundation in 2019  to make a website that is nothing more than a provider list and links to some online articles on autism that could be found via Google.
  • 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” in existing autism service centres–and no other information about what the $10 million hubs are has ever been made available to the public.
  • These are just two examples of countless other boondoggles.

The “National Autism Strategy”: The same failed policy under a new name

CASDA, a partner of the charity Autism $peaks, is the lead lobbyist for the National Autism Strategy. Some conflicts of interest:

  • The Vice Chair of the Executive Board for CASDA is also the President of Autism Speaks Canada.
  • Autism Speaks is a Capital Lead Partner at PAFN and a Collaborator of CASDA.
  • CASDA’s national autism “needs study” was very small and only 2.4 percent of the participants in the survey were even autistic.
  • The consortium of Autism Speaks, PAFN & CASDA seek to monopolize federal autism funding. They represents their business interests only.
  • Autism $peaks, which has promoted antivaccine views for years and still actively supports eugenics, is viewed as a HATE GROUP by most autistic people.

Will the government respond to arm’s-length study?

The Canadian Academy of Health Sciences is completing an arm’s-length study as well (out early 2022).

However, some autistic advocates are concerned the government will use the study to claim that autistics were consulted, while just continuing to do what the CASDA lobby wants.

Our vision of policy reform: Fairness, Inclusion, Equality

Nothing about us without us

  • All policymaking about disability should include disabled groups and individuals
  • The leadership of non-speaking people must be central of any autism policymaking
  • Our views and ideas must be actively incorporated into policy

Autistic people have the right to be included in all disability legislation.

  • Autistic people are not included in the Accessible Canada Act. Our groups were actively excluded from consultation on the Accessible Canada Act
  • The Government needs to honour the access rights of autistic Canadians as it does people with other disabilities.

Autistic and intellectually disabled people have the right to live independently

  • 90 percent of federal housing dollars in the autism sector today go towards segregated, institutional housing.
  • While some other disabled people have the right to choose their own housing and PSWs, these rights are not protected in law for autistic people.
  • Poverty and underhousing are a human rights issue for autistic Canadians.

Say yes to the neurodiversity movement

  • Autistic people are the experts on autism.

  • Charities, MPs and parent groups do not speak for us.

  • We do not want pity: we DO deserve rights and protections.

Every day, we are educating to make the world a safer place for autistic people. Many parents and families are listening to us: Policymakers should too!

The National Autism Strategy is a marketing ploy to build the brand of the organizations represented by CASDA. The Government of Canada needs to meet with autistic-led advocacy groups to find a new way forward. Not a “strategy”. Equality.