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.