Autistic advocacy in Ontario: Highlights from 2022

The past year has been exciting, as we returned to in-person events and continue to grow, with new projects and connections across Canada!

Some highlights:

  • We raised the neurodiversity flag at Toronto City Hall, after 2 years of virtual observances. It was incredible to be together again in real life and to break bread (well, cake) and feel so welcomed by the protocols staff at Toronto City Hall. Thank you to all who attended.
  • We provided info & spoke before the Senate of Canada, together with Autistics United Canada (AUC), about the need for federal policymakers to move from a charity perspective to a rights perspective. Canadian policymakers need to begin to study best practices in disability policy and consult with autistic-led groups.
  • We continued to partner with the Centre for Independent Living Toronto (CILT) to improve vaccine access for autistic/disabled people through the Disability Vaccine Outreach Initiative, including our vaccine info webinar, social media outreach and one-to-one outreach by our amazing Vaccine Ambassadors, Gaby and Sam, to ensure access for autistic Torontonians with support needs. We are so glad that CILT included us in this important project!
  • We led the annual Disability Day of Mourning in Ontario, remembering those who were murdered by their parents/caregivers and saying: Never Again. Our members read names, gave speeches and provided support through a virtual vigil on March 2. Thank you to everyone who made this important vigil happen.
  • A4A members presented to the Ontario Association of College and University Housing Officers and to University of Waterloo about inclusion, student life and new research on autistic students in college and university. We have more invitations to present on this topic early in the new year!
  • We continued our groundbreaking Autistic Health Outreach Project, educating Canadian medical students about autistic health access needs at the University of Toronto and Queen’s University medical schools.
  • We continued to support and collaborate with Community Living Ontario to work towards ending abusive long-term care and institutional housing in our province, through the Alliance on Aging and Disability. Thank you to all partners for all their hard work on this issue, to our rep Taryn and to Shawn from Community Living for inviting us.
  • A4A was an organizing partner in the online annual Canadian national conference on the International Day for Persons with Disabilities (United Nations), which was hosted by the Alliance for Equality of Blind Canadians, streamed on Accessible Media International and featured speakers and participants from around the world.
  • We were contacted by media for stories about ABA, restraint and seclusion in schools, media portrayals of autism and other topics. It was especially awesome to be contacted by OWL magazine for their neurodiversity feature!
  • We consulted with a community coalition about the need to modify the existing Accessibility for Ontarians Act. At present, autistics are not included among the disabled groups protected by this legislation, creating a barrier when we try to seek inclusion and pursue human rights complaints.
  • We attempted to consult with the Public Health Agency of Canada about priorities in federal autism appropriations. Unfortunately, PHAC continued its pattern of devaluing autistic people’s input and time, so for the well-being of our reps we left the conversation. We will continue to connect with MPs, Senators and other federal agencies instead.
  • We continued to educate employers on inclusive supports and communication access for autistic people through our Autistic At Work presentation, and to present to mental health organizations about access and inclusion.
  • We began to plan for 2023, including launching our Neurodiversity Library with support from the Autistic Women & Nonbinary Network; joining a new, national coalition project to work for regulating legislation on restraint and seclusion in schools; taking action to promote supported independent living options for autistic and intellectually disabled people; new advocacy to protect people with epilepsy from cyber attacks; policy work, education initiatives and much more.

I feel so honoured to work with the Board and volunteers, who are the most incredible people. Any policymaker, parent, educator or organization is lucky to have access to their time, perspective and ideas. I can’t wait to see what the future brings for autistic rights in 2023.

-Anne Borden King

 

Election 2022: Ontario NDP’s autism disinformation campaign

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.

 

 

 

Ontario may change legal definition of “child” in legislation to include disabled adults: A4A responds

A4A was contacted by the Ministry of the Attorney General to give our view on a proposed legislative change of the definition of “child” that would include disabled adults, potentially over-riding the Substitute Decisions Act, which governs decision making for developmentally disabled adults in their decisions in housing, health care and more.

Below is our response:

Response to the proposed definition change of “child” in Ontario policy

As an autistic-led advocacy organization, Autistics for Autistics opposes the proposed change in the Province of Ontario’s definition of “child” so as to align with the federal definition of child in its Divorce Act, to include disabled adults.

Context

We present this response with the understanding that although autistic and/or developmentally disabled adults are not children, unfortunately many in Canadian society still hold that view. This includes policymakers at both the provincial and federal levels.

That regressive approach to policy has profound negative effects on the lives and safety of autistic and/or developmentally disabled adults in Canada, due to residential segregation (which is sadly a norm in Canadian policy); poverty; unemployment; and the denial of communication access rights (AAC) for many nonspeaking autistic adults.

The bulk of Canada’s federal and provincial disability-related legislation has been applied only to disabled adults without intellectual disability, meaning that:

  • developmentally disabled adults in Ontario and across Canada do not have their access rights protected (despite promises in legislation);
  • developmentally disabled adults are not able to choose their own support workers (as other disabled people are); and
  • there is no commitment to independent living in the community by either the Government of Canada or the Government of Ontario.
    • In fact, 80 per cent of housing in the I/DD sector is still allocated for residential
      institutional models
      (large institutions or group homes).

Proposed change to the definition of “child”

After surveying our members and reviewing case law in the US and Canada, we’ve identified two significant risks with the proposed definition change, outlined below.

Risk 1: The new definition could be used in court proceedings to infantilize an adult who may otherwise be a candidate for independent living and supported decision making.

This infantilization would have a devastating effect on disabled individuals’ capacity to live independently with supports if they are presented in court as a “child” rather than an adult with the needs and rights of all other adults.

  • All disabled adults – including those with developmental disabilities – should have the right to housing and supported decision making that is independent of their parents.
  • Some parents wish to retain control over their adult children’s finances and independence for a variety of reasons; many have good intentions, others are doing so for their own fiduciary gain.
  • Regardless of those parents’ intentions for limiting their adult offspring’s living options, it leads to a lack of basic freedoms as identified under the Charter and a grim future as the person ages through young adulthood, midlife and into their senior years.
  • Judges are not immune to bias. The use of the term “child” would reinforce any existing biases about developmentally disabled adults having unequal rights with other adults.
  • Robust policy is a form of insurance against bias in decisions; the current definitions provide an important degree of protection.

Risk 2: If the definition of child is changed as proposed, it would raise problematic issues for the interpretation of the Substitute Decisions Act –with the Children’s Law Reform Act being utilized where it is not appropriate.

  • Currently, the Substitute Decisions Act governs issues around decision making for developmentally disabled adults.
  • While there is room for improvement in the Substitute Decisions Act, it remains a critical tool for ensuring rights of developmentally disabled and other disabled Ontarians.
  • Without a rigorous Substitute Decision Act, decision-making bodies could easily relegate disabled adults to the status of children, limiting their rights and freedoms.
  • With decisions applying the new definition of “child,” individuals would more often be denied access to independent living and supported decision-making.
  • Those individuals able to access the resources to appeal a decision that deprived them of supported decision making would have less recourse if the Substitute Decision Act loses its rigour.

Policy Discussion

Autistics for Autistics supports independent living and supported decision making. We oppose the existing regressive approach to guardianship in Ontario, which need a complete overhaul. We advocate for provincial (and federal) politicians to study best practices in other countries and to reach out to groups such as ours when making policy–instead of their current approach of giving millions in discretionary funds to organizations that profit from segregation and abuse.

Our hope for the future is that our province will move towards recognizing newer models of housing independence such as the “money follows the person” model in various US jurisdictions and the wonderful work of currently underfunded organizations such as LiveWorkPlay in Ottawa.

Perhaps this is a moment where our province could lead the way towards Canada-wide reform by contemplating why, in 2021, it has considered labeling disabled adults as “children”. Perhaps policymakers could use this moment to learn and grow, studying best practices and consulting with autistic and/or developmentally disabled adults across the province about the kind of lives they want and deserve—independent lives in the community, reflecting the overarching values of our province and our democracy. This discussion is long overdue.

Please feel free to contact Autistics for Autistics to read our provincial and federal policy reports or to discuss any other issues.

Thank you.

Anne Borden King

Board member, representing the Board
Autistics for Autistics, Ontario