We have the right to live: & other reasons why we oppose Autism Speaks

by Autistics for Autistics, 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

2021 Disability Day of Mourning: Closing Remarks

photo of a yellow candle against a dark background with sevreal blurry candle lights in the backgroundby Rishav Banerjee

The following was read at A4A’s vigil for the Disability Day of Mourning, a global event where we remember disabled people who were murdered by their parents/caregivers.

Ableism exists all around us and can be deadly, as seen by today’s memorial. Disabled people face barriers in all walks of life, but it should not be this way.

In order to fight for the rights of disabled people – to fight for our right to live, we need to dismantle ableism once and for all.

The past year has shown us that accessibility is not as infeasible as people once thought. Accommodations can be made with the results being that at the end of the day, everyone regardless of ability or neurotype benefits as these accommodations transform into universal design. However, 2020 showed us that ableism is still pervasive, as many continue to disregard the safety and lives of disabled people up to considering them acceptable sacrifices and an inconvenience for everyone else’s “freedom” in light of the ongoing COVID-19 pandemic.

How does this relate to filicide? Because attitude and representation matters.

When covering the murder of a disabled person at the hands of people entrusted to help them live fulfilling lives, the media will often disregard the humanity of the killer’s victim. The media turns the victim into a burden, a caricature, a machine that was no longer worth maintaining. Not as living beings — human beings with hopes, dreams, feelings, thoughts, ideas, and a presence in this world. People whose storied lives were brought to an unceremonious, painful, cruel, and treacherous end.

Going forward, we hope that the memories of those lost to ableist violence will live on. Those  who have lost their lives to ableist violence deserve to have their lives, names, and stories remembered.

And as always, while we mourn the lives that were cut short, we also must remember to fight relentlessly for the living.


UPDATED: Our Autism Policy Report to the Government of Canada

We’ve updated our Autism Policy Report & Recommendations to the Government of Canada. It contains description and critique of the Government’s current failed policies as well as recommendations, based on consultations with experts, for creating policy that is actually helpful.

The Full Report is important because it describes the pathway to the current failed policies. It is helpful to understand this path when forging an entirely new one. The full report also contains all the recommendations.

The List of Recommendations is provided for policymakers who don’t read long things.

The Full Report: A4A National Policy Report & Recommendations, 2021

The List of Recommendations: A4A National Autism Policy Recommendations 2021, Abridged


Government of Ontario: STOP promoting abusive autism “therapy” in schools

Ontario’s autistic-led advocacy group, Autistics for Autistics, strongly condemns the Government of Ontario for allocating $7.5 million to train provincial teachers in using a bogus autism “therapy” known as Applied Behaviour Analysis (ABA).

On behalf of the autistic children of Ontario, we ask the Government of Ontario to de-fund this wasteful and abusive program now.

 About ABA and Ontario education policy

  • Applied Behaviour Analysis (ABA) was founded by O. Ivor Lovaas, a behaviourist who also co-founded gay conversion therapy.
  • Much like gay conversion therapy, ABA is based on an “aversive” system to attempt to train children to comply with ABA providers (known as BCBAs). Aversives may range from denying play time to electroshocks.
  • A year of ABA can cost $30,000-$90,000 per child. In contrast, inclusion-based alternatives to ABA are affordable and sustainable.
  • ABA-based school programs have been sued for human rights abuses in Canada, including high-profile cases in Alberta and Ontario.
  • When surveyed, autistic people consistently oppose ABA. In a recent survey of 3,431 autistics, just 5% supported ABA. ABA is also rejected by many parents, teachers, autism experts and therapists.
  • Ontario’s association of ABA providers (ONTABA) hired the Pathway Group. The Bay Street lobbying firm targeted specific Members of Provincial Parliament who make budget decisions.
  • ONTABA opposes equitable funding for non-ABA supports such as Occupational Therapy, Speech Language Pathology, nor AAC technologies for non-speaking children. In fact, BCBAs have lobbied to get all of the funding for their own industry, including shutting other therapists out of Ontario schools.
  • While BCBAs argue that ABA is “the only way,” ABA is rarely used outside of the US and Canada. In the United Kingdom, ABA is not generally used nor funded because the Health Service doesn’t support services that are not evidence-based.

What the research says about ABA

Questions for policymakers

Ontario policymakers and educators need to ask themselves some hard questions

  1. When the very people being supposedly “served” by a therapy organize against it in such numbers and with such passion, is it ethical to provincially fund ABA?
  2. With no evidence of benefit, clear evidence of harm and parent demand for alternatives, is there any rational reason to invest in ABA?

Government of Ontario:Please reach out to autistic-led advocacy organizations so that we can connect you to better approaches to autism services and policy. Do what’s right. De-fund ABA now.

Ontario may change legal definition of “child” in legislation to include disabled adults: A4A responds

A4A was contacted by the Ministry of the Attorney General to give our view on a proposed legislative change of the definition of “child” that would include disabled adults, potentially over-riding the Substitute Decisions Act, which governs decision making for developmentally disabled adults in their decisions in housing, health care and more.

Below is our response:

Response to the proposed definition change of “child” in Ontario policy

As an autistic-led advocacy organization, Autistics for Autistics opposes the proposed change in the Province of Ontario’s definition of “child” so as to align with the federal definition of child in its Divorce Act, to include disabled adults.


We present this response with the understanding that although autistic and/or developmentally disabled adults are not children, unfortunately many in Canadian society still hold that view. This includes policymakers at both the provincial and federal levels.

That regressive approach to policy has profound negative effects on the lives and safety of autistic and/or developmentally disabled adults in Canada, due to residential segregation (which is sadly a norm in Canadian policy); poverty; unemployment; and the denial of communication access rights (AAC) for many nonspeaking autistic adults.

The bulk of Canada’s federal and provincial disability-related legislation has been applied only to disabled adults without intellectual disability, meaning that:

  • developmentally disabled adults in Ontario and across Canada do not have their access rights protected (despite promises in legislation);
  • developmentally disabled adults are not able to choose their own support workers (as other disabled people are); and
  • there is no commitment to independent living in the community by either the Government of Canada or the Government of Ontario.
    • In fact, 80 per cent of housing in the I/DD sector is still allocated for residential
      institutional models
      (large institutions or group homes).

Proposed change to the definition of “child”

After surveying our members and reviewing case law in the US and Canada, we’ve identified two significant risks with the proposed definition change, outlined below.

Risk 1: The new definition could be used in court proceedings to infantilize an adult who may otherwise be a candidate for independent living and supported decision making.

This infantilization would have a devastating effect on disabled individuals’ capacity to live independently with supports if they are presented in court as a “child” rather than an adult with the needs and rights of all other adults.

  • All disabled adults – including those with developmental disabilities – should have the right to housing and supported decision making that is independent of their parents.
  • Some parents wish to retain control over their adult children’s finances and independence for a variety of reasons; many have good intentions, others are doing so for their own fiduciary gain.
  • Regardless of those parents’ intentions for limiting their adult offspring’s living options, it leads to a lack of basic freedoms as identified under the Charter and a grim future as the person ages through young adulthood, midlife and into their senior years.
  • Judges are not immune to bias. The use of the term “child” would reinforce any existing biases about developmentally disabled adults having unequal rights with other adults.
  • Robust policy is a form of insurance against bias in decisions; the current definitions provide an important degree of protection.

Risk 2: If the definition of child is changed as proposed, it would raise problematic issues for the interpretation of the Substitute Decisions Act –with the Children’s Law Reform Act being utilized where it is not appropriate.

  • Currently, the Substitute Decisions Act governs issues around decision making for developmentally disabled adults.
  • While there is room for improvement in the Substitute Decisions Act, it remains a critical tool for ensuring rights of developmentally disabled and other disabled Ontarians.
  • Without a rigorous Substitute Decision Act, decision-making bodies could easily relegate disabled adults to the status of children, limiting their rights and freedoms.
  • With decisions applying the new definition of “child,” individuals would more often be denied access to independent living and supported decision-making.
  • Those individuals able to access the resources to appeal a decision that deprived them of supported decision making would have less recourse if the Substitute Decision Act loses its rigour.

Policy Discussion

Autistics for Autistics supports independent living and supported decision making. We oppose the existing regressive approach to guardianship in Ontario, which need a complete overhaul. We advocate for provincial (and federal) politicians to study best practices in other countries and to reach out to groups such as ours when making policy–instead of their current approach of giving millions in discretionary funds to organizations that profit from segregation and abuse.

Our hope for the future is that our province will move towards recognizing newer models of housing independence such as the “money follows the person” model in various US jurisdictions and the wonderful work of currently underfunded organizations such as LiveWorkPlay in Ottawa.

Perhaps this is a moment where our province could lead the way towards Canada-wide reform by contemplating why, in 2021, it has considered labeling disabled adults as “children”. Perhaps policymakers could use this moment to learn and grow, studying best practices and consulting with autistic and/or developmentally disabled adults across the province about the kind of lives they want and deserve—independent lives in the community, reflecting the overarching values of our province and our democracy. This discussion is long overdue.

Please feel free to contact Autistics for Autistics to read our provincial and federal policy reports or to discuss any other issues.

Thank you.

Anne Borden King

Board member, representing the Board
Autistics for Autistics, Ontario