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 are writing because it is important for you to know about a specific group that is actively working against autistic human rights. We are asking that you do not endorse or work with this group because, in our view, to do so is to threaten the well-being and safety of autistic people. That group, Autism Speaks, is an organization with a “eugenics” focus that is the driving force behind the proposed National Autism Strategy in Canada.

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