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.

 

 

 

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

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.

 

 

We support the NDP’s Kemal Ahmed: Harassment against Mr. Ahmed and his campaign team is racist, ableist and anti-democratic

August 25, 2021. When New Democratic Party candidate Kemal Ahmed posted on social media about Applied Behaviour Analysis (ABA), he could not have expected the onslaught of harassing responses from members of ABA-based interest groups—nor that they would be demanding he be removed as a candidate from speaking engagements on his roster.

Ahmed, a member of Neurodivergent NDP, expressed a concern that is shared by nearly all autistic people in Canada: that families and individuals deserve other options rather than the current ABA-dominated funding model for autism services.

He tweeted: “As someone who is a neurodiverse candidate, I’m used to people speaking on my behalf, but I put my foot down when I see the $multi-billion dollar ABA lobby in action advocating to traumatize children.”

For this comment–a view Mr. Ahmed has the right to hold–members of the ABA lobby are demanding the Government stop Mr. Ahmed from speaking at upcoming events such as a panel at the Toronto District School Board and have threatened “a full court press” against the candidate for “connections with a hate group” (which is how they describe the neurodiversity movement). They also called for his removal from the party, harkening the long, racist history of blackballing and intimidating BIPOC candidates in Canadian politics. (1)

ABA: what autistic people think

Ahmed’s statement reflects the views of Neurodiverse NDP as well as both of Canada’s national autistic self-advocacy organizations (Autistics for Autistics and Autistics United Canada), which represent thousands of autistic Canadians. In fact, consistently more than 90 percent of autistic people do not support ABA, which was developed in the 1970s by some of the same people who developed gay conversion therapy, a practice banned on children in Ontario.

The founder of both ABA and “feminine boy” conversion therapy for gay and trans children, Ole Ivar Lovaas referred to autistic children as “not human” and used electroshocks to prod children into compliance according to the whims of the so-called therapists. Some of his patients, whom he “treated” with Dr. George Rekers, committed suicide.

But ABA’s use of electroshock torture is not a thing of the past. A major ABA centre in the US (the Judge Rotenberg Center) forces its autistic and intellectually disabled patients to wear shock devices that electrocute them when they “break rules,” including not smiling, not making eye contact or refusing to take off their jackets.

Despite a ban by the US FDA, the Rotenberg Center continues to use these shock devices—and is fully supported by the international association of ABA providers (ABAI), who even featured the Judge Rotenberg Center and praised its practices at its 2019, 2020 and 2021 conferences. In fact, there is no professional association of ABA providers that has ever spoken out against the use of shock torture. In our view, this endorsement makes it clear what ABA is all about—compliance at any cost.

“We are not anti-supports and neither is Kemal Ahmed, who made his stance on therapies and supports quite clear as well,” says Taryn Hamlyn of Autistics for Autistics. “We are asking for supports that are respectful and have a focus on human rights and dignity of autistic and other developmentally disabled folks.”

Harassment on social media

Although autistic Canadians from a range of regions and groups were quick to support Ahmed’s statements, the ABA lobby and its proxies reacted swiftly on social media with a barrage of inarticulate rage-tweets that, by all accounts, were exhausting to read or respond to.

Amidst the bombast from the lobby: a call to the provincial government to have Mr. Ahmed banned from speaking at an upcoming Toronto District School Board event, calls for party leader Jagmeet Singh to expel him and random exhortations for the Ontario government to censure him in this, a federal election.   [……….]

The Board of Autistics for Autistics are deeply concerned that it is mostly white parents harassing a visible minority running for office and that these bullies are seeking to silence the candidate by strong-arming the government and his party. A4A’s members remember well how ABA lobbyists have harassed our members —especially our BIPOC Board leaders and members— in the past.

“Like with other areas of disability activism, autistic advocates are routinely shut down and attacked for trying to share their views,” says Kohenet Talia Johnson, a co-founder and board member of Autistics for Autistics: “It’s like there is no right for autistics to be heard if they do not follow the orthodoxy of ABA as the end-all and be-all of support for autistic people.”

Policy Consultations

Recently, Autistics for Autistics, together with Autistics United Canada, consulted with the Canadian Academy of Health Sciences on its review of federal autism policy. Among our groups’ policy recommendations: give autistic-led organizations a place at the table when the Government makes decisions about autism policy. Another recommendation: de-fund ABA.

In addition, Autistics for Autistics has met with the Ontario Provincial Government, the United Nations, the Professional Standards Authority (UK) and others about inclusion and best practices for autism policy. Our positions on housing, employment, communication rights for non-speaking autistics, education, health care access and government decision-making can be found on our Policy page, which presents clear and science-based alternatives to ABA.

“Just because a therapy has been used for a long time doesn’t mean it is a good therapy,” added co-founder Anne Borden King. “This is especially true with autism therapies like ABA, which were founded on cruelty and ignorance.”

Party support is crucial

It is now several days after the problem emerged and only two NDP ridings have publicly supported Mr. Ahmed’s right to speak at his campaign stops. Autistic Canadians are wondering: where is the rest of the party?

“The ABA industry says that without ABA, kids will fail. That is a myth that preys on caretakers and politicians to uncritically support ABA,” notes Hamlyn. “People fear being shouted down and demonized for their legitimate critiques of ABA and we can see how this is happening here.”

The federal and provincial NDP need to support the candidate’s right to speak and work without harassment from interest groups seeking to intimidate him from being active in the community. Social justice extends to everyone, including neurodivergent people.

We are waiting for action from the NDP.

(1) Media: Please contact us for citable screenshots; we do not want to platform them by posting here.