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.