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.

 

 

To our allies in the Canadian disability community: Please do not support Autism Speaks or the National Autism Strategy

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Open Letter to Canadian disability rights organizations:

As autistic people, we are honoured to be working with you for disability justice. Our partnerships, friendships and connections are precious to us. Thank you.

We want to inform you about a group that is actively working against autistic human rights. That group is Autism Speaks.

Autism Speaks, despite its name, does not speak for autistic people. When polled, 98% of autistic adults oppose Autism Speaks –and there is a massive global movement by autistic people and allies to stop Autism Speaks. In fact, regardless of the many differences among autistic advocates about politics and advocacy, there is one view we pretty much ALL agree on: that Autism Speaks is a hate group.

Some reasons:

Autism Speaks has allocated hundreds of millions of dollars towards “eugenics” projects that may seek to prevent autistic people from being born.

  •  Autism Speaks is a co-founder of the MSSNG project, a massive, far-reaching project to make a global database of 10,000+ autistic children’s DNA available for use by researchers throughout the world who can fill out a pop-up menu on their website to access it.
  • The DNA is extracted without the children’s permission.
  •  It is done with the purpose of identifying “autism genes” that will then be used in prenatal testing.
  •  If common genes are identified through this research, people will do prenatal testing and terminate pregnancies if they think there are “signs of autism”.
  • This project is active in Canada. Autism Speaks Canada has earmarked hundreds of thousands of dollars to its own arm of the project. A group of geneticists in Toronto has also been involved in collecting data for the database.
  • One of the project’s co-founders, Dr. James Watson, was fired from Cold Spring Harbour Laboratory for his racist remarks about African Americans, intelligence and using eugenics to find “a cure for stupid”.
  •  In addition to the basic eugenics of the MSSNG project, consider also the message that MSSNG sends to those of us who are right here, now: that our lives are not worth living and we would be better off to never have been born.
  • It also compromises the privacy rights of an entire disabled population as parents proxy-consent to their children’s DNA being stored and shared throughout their lifetimes.
  • In addition to MSSNG, Autism Speaks funds the Autism Tissue Program (Autism BrainNet), a network that distributes brain tissues donated by parents of deceased autistic children for “research into the causes of autism.”
  • Autism Speaks co-founder Susan Wright has publicly wished for a future in which autism is “a word for the history books.
  • In Iceland, the type of genetic testing that the MSSNG project does, is already being used for the mass-abortion of fetuses with Downs Syndrome.
  • As Ontario mom Deanne Shoyer recently wrote: “I’m not going to support any organization who wishes my sons could have been prevented.”

From its inception, Autism Speaks has built its fundraising enterprise on telling stories about autistic people that portray us as a burden on our families.

  • Their 2009 video “I Am Autism” is narrated by a disembodied gravelly-throated man with images of autistic children as though they are sub-human, saying:

“I am Autism. I know where you live and I live there too. And if you’re happily married, I will make sure your marriage fails. Your money will fall into my hands and I will bankrupt you for my own personal gain. I will make it impossible for your family to attend any events without a struggle, without embarrassment, without pain. …You have no cure for me.”

  • In the US, the Autistic Self-Advocacy Organization recently cut ties with Sesame Street and the Ad Council for their partnership with Autism Speaks on its “100 Day Kit,” which: “encourages parents to blame family difficulties on their autistic child and to view autism as a terrible disease from which their child can ‘get better.’”
  • In Autism Speaks’ 2006 video Autism Every Day, its Executive Vice President Alison Singer described how she dreamed of driving her autistic daughter “off the George Washington Bridge”. The story was used to gain sympathy for the “tragedy” of autism – and gain donor dollars for the organization.
  • Autism Speaks merged with a sister organization, Cure Autism Now in 2006. Toegther they have dedicated many years and hundreds of thousands of dollars into researching the hypothesis of disgraced expert witness Andrew Wakefield that vaccines “cause” autism.
  •  In the view of many, Autism Speaks contributed directly to the anti-vaccination movement, with many parents of autistic children refusing to vaccinate their subsequent children. The belief behind it: “I’d rather my child suffer/die of measles than be autistic” impacted not only the individual children, but the entire disability community.
  • In 2016, co-founder Suzanne Wright released a public statement prior to a national summit referring to the “autism crisis” and equated having a child with autism to “not living.”
  • We don’t want a “cure”. We want to be accepted for who we are, and given access to all the rights that non-autistic people enjoy in our country.

Autism Speaks’ projects are built on the medical model of disability, which keeps us segregated and oppressed. 

  • Autism Speaks’ national march in Washington DC recently featured the Judge Rotenberg Center (JRC) at its Family Resource fair. The JRC has been sanctioned by the US government for using shock torture on residents at its facility.
    • The United Nations has condemned the JRC’s practices as torture, the U.S. Department of Justice’s civil rights division is investigating the JRC and the FDA has recently banned the JRC’s shock torture.
    • Yet the institution remains remorseless even though 6 residents have died directly or indirectly as a result of torture there.

Autism Speaks Canada is a major funder of CASDA, who collaborates with Autism Speaks on the proposed National Autism Strategy

We want you to know that if you partner with CASDA, you are also partnering with Autism Speaks–and in our view working against the ideals of disability justice. The issue of who controls autism policy in Canada is also about who controls our lives and/or whether we even get to live them. That’s why we’re reaching out, because this is extremely important for the future well-being of us all.

Thank you for taking the time to read this letter. If you have more questions, please contact us anytime. Thank you.

In solidarity:

-Autistics for Autistics Canada

PDF of the Letter: Open Letter to Canada’s Disability Rights Groups