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.

A4A’s Annual Report 2020: What we did while we stayed the eff at home

January 2020, members protesting the film VAXXED2 prior to the pandemic

Despite the global pandemic and the infodemic, autistic-led advocates around the world continued to do important work throughout 2020-21. Autistics for Autistics was no exception. Perhaps because autistics tend to work so well in the nonverbal world and online, it was in some ways not too difficult to adapt to the changed landscape of advocacy.

Although by all accounts 2020 was a [insert long string of expletives here] we persevered and got a lot done in rights advocacy, education and activism.

Early 2020
In January 2020, before the pandemic hit, a group of autistics and ally friends stood in the freezing rain for two nights in a row, protesting the screening of VAXXED 2 at a theatre in Toronto (Check out the eerily prescient photo of Raya and me, above!) Other autistic-led groups held similar protests in Halifax, Moncton (our local chapter); North Bay and Victoria. We handed out fliers explaining why vaccines are safe and explained to passersby the ways that antivax is associated with hate organizations.

(When you think about it, the image of a small group of mostly #ActuallyAutistic people in the rain pretty much signifies the movement against antivax until mid-2020, doesn’t it? Might things have turned out a little bit better in 2020 if more neurotypicals had tuned in earlier to the message that autistic people have been screaming from rooftops for decades? Well, yes. Annnyhow, on to the rest of the year…)

Pandemic-related education and advocacy
In March, as the first wave of the pandemic hit Canada, A4A produced “We are Heroes: A Plain Language Guide to Covid-19” (with cute cat illustrations!) about sheltering in place and ways to cope and understand all the changes happening during closures. It was our most popular publication, going viral around the world. We also collaborated with Autistics United Canada on a guide for autistics with other resources related to survival and coping during the pandemic. AUC did some awesome online hangouts, too, which A4A members participated in.

Autistic rights issues didn’t go away during the pandemic; some were, in fact, amplified. We advocated for fair supports for disabled people when the federal government totally neglected the disabled in its pandemic response. We called for an end to the warehousing of disabled people in Ontario’s broken Long Term Care institutions. We joined with Arch Disability Law to support the rights of AAC users to have access to communication during hospital care. We advocated for the rights of an Ontario student who was being forced to attend school despite safety concerns.

Autistics for Autistics also partnered with the Centre for Independent Living Toronto (CILT) on the City of Toronto-sponsored Disability Community Vaccine Outreach Initiative, which has worked for vaccine access and education for disabled people in Toronto, leading the #ActuallyVaccinated workshop and providing vaccine access guidance and assistance for members attending City vaccine clinics who use AAC and those with sensory and other access needs. Many thanks to CILT!!

Our members also volunteered with Vaccine Hunters Canada, the grassroots movement working to ensure that all have access to vaccines and that no vaccine goes to waste.

Other presentations and events
Outside of COVID-related issues, we also participated in many Zoom sessions related to issues such as employment, human rights and health care access. Several of our members presented before employers (such as Morningstar Canada) about neurodiversity in the workplace; employment groups (such as Viability); student groups (EngiQueers Canada); universities (autistic equity, at University of Toronto); and medical schools (health care access, at Queen’s University and U of T). We spoke up and put pressure on the government to de-fund an abusive residential institution which is the subject of a human rights class action. (More news on this in September).

We held annual events, including our annual Disability Day of Mourning vigil virtually. The Disability Day of Mourning is a day to remember disabled people who were killed by their caregivers and to say: never again. While we could not raise the Neurodiversity flag at Toronto City Hall (due to Covid safety restrictions) we did raise a tiny flag on a tiny statuette of the CN tower, virtually, on social media. We did not hold an online event for the International Day of the Stim this year, but it will be back (online event) on Sept 12, 2021.

Consulting and advocating
When the Canadian Government retained an arm’s-length organization (the Canadian Academy of Health Sciences, CAHS) to assess the Government’s autism funding approach, we authored reports on social inclusion (school and housing); economic inclusion (work and supports); “interventions” (services); and the problem of autism pseudoscience. The CAHS provided surveys, written online forums and Zoom-style online consultation sessions and breakout chats. Many of our members turned out to address human rights issues and the desperate need for a paradigm shift in Canada’s currently broken approach to autism services and community inclusion. The CAHS’s final report will be out in January 2022.

In 2020, Autistics for Autistics advocated for autistic people and their families on a daily basis and educated within the legal, educational and social services sectors. We also took opportunities to speak out against the abusive practice of Applied Behaviour Analysis (ABA) and against the eugenics projects of Autism $peaks. We continued to support #LandBack and other Indigenous rights as well as Black Lives Matter and other antiracist movements, 2SLGBTI+ rights, the Toronto encampments and the right to housing, economic justice and climate justice.

International advocacy
Internationally, Autistics for Autistics was honoured to be invited to consult as part of a consortium with the Professional Standards Authority of the UK on their review of the evidence around Applied Behaviour Analysis (ABA). ABA is not funded much in the UK but the lobby is attempting to get a foothold there. We shared resources including our 2020 paper about new research on undeclared conflicts of interest and other methodological issues in ABA.

Our group also worked with US advocates and authored a petition against what we view as unethical experiments on autistic children by Duke University. The petition gained more than 15,000 signatures in just a few weeks and was part of a broader catalyst for further investigations and media coverage. US regulators are now taking a closer look at Duke’s program as part of a review of stem cell companies’ claims and we will have more news on this case in the next few months. Please keep signing and sharing!

We also continue to be active in the quarterly International Autistic Leadership Summits, with groups from around the world.

Transitions
We recently launched a Discord server for our group chats and have begun to migrate, at least in part, from the problematic social media giant that shall not be named. Our members in InfoSec had typically relied on Twitter and email for communication because of the many issues with FB; working in a Discord is better and more inclusive. All activists need to start imagining a future of social and political organizing that works outside the traditional social media box.

In September, Autistics for Autistics will have its first AGM, where two new Board members will be elected as we reduce the size of our board from nine to seven. I’m stepping down from the Board. For the record, I’ve loved being on this Board and no one has asked me to leave. It’s just time. As we have established capacity, it’s now a moment for us founders to begin to rotate off the board and make way for new people, new energy and new ideas.

In the four years since our group has launched, we’ve accomplished so much! My favourite memory is from a day in April 2019, when we all gathered at Toronto City Hall for the first-ever raising of the Neurodiversity Flag to celebrate ND Pride. Connecting irl like that and watching our community’s flag fly in front of our City Hall was a beautiful moment. I’m so grateful to the autistics and allies who made that day such a celebration and who bring such vibrancy, focus and commitment to our movement.

-Anne Borden King

 

 

US court overturns FDA’s ban on shock torture of autistic and intellectually disabled students: Our statement

July 10, 2021 Autistics for Autistics is united with other disability rights groups in condemning the July 6 ruling by the US District of Columbia’s Circuit Court overturning the US Food and Drug Administration (FDA)’s ban on the use of a shock torture device on disabled children and adults at the Judge Rotenberg Center, a residential institution and school in Massachusetts.

The Judge Rotenberg Center (JRC) took the US FDA to court to stop the government’s ban on shock torture. On July 7, the District of Columbia judge stopped the FDA’s 2020 ban, making it once again legal for the JRC to use shock torture. There is no word yet on appeals, but advocates are researching all legal options.

In addition to the FDA’s attempt to ban it, the shock device has also been deemed torture by two UN Special Rapporteurs on Torture as well as Amnesty International because it causes severe trauma and can cause third degree burns and other bodily harm.

A living hell at the JRC
The JRC is the only program in America to use electric shocks on students, some as young as nine years old. Many of the students at the JRC are Black and Latine. About one-third of the students at JRC are fitted with the device.

The FDA-banned device (known as the GED) is composed of electrodes attached to the student’s arms, legs, and torsos that emit a painful electric shock when activated by a worker at the JRC. Residents wear the devices 24 hours a day, including in bed and in the shower and can be shocked many times a day for such “offences” as “covering ears”, according to the JRC’s own guidelines.

One resident, Andre McCollins, was restrained and shocked 31 times for 7 hours because he had not taken his coat off quickly enough when he arrived at the school. He suffered third degree burns and remains traumatized from the event after his mother removed him from the JRC.

Survivor Jennifer Msumba told the Autistic Self Advocacy Network in 2014: “Some actual behaviors I was shocked for were: covering my eyes with my hands, covering (pressurizing) my ears, tic-like body movements, wrapping my foot around the leg of my chair, not answering staff within 5 seconds, saying the word “no”, shaking my head, tightening my fingers for more than 2 seconds, waving my hands in front of my face…and attempt to remove restraints. Those are just a few.”

Abusive practices that Disability Rights International (DRI) classifies as torture, including deprivation of food, being locked alone in a small space (seclusion), restraint, electric shocks, verbal abuse, dehumanization and other abuse occur daily at the JRC. According to a psychologist who visited the JRC representing the New York State Department of Education: “No other class of citizen in the United States could be subjected to this.” At least six students have died at the JRC as a result of its practices.

#StopTheShock
Electric shock is a form of torture that has been used on detainees such as political prisoners in Latin America during the 1980s. Its use by the JRC reflects a continuum of racist and ableist violence, torture and coercive control. This is not history: it is still happening in America. To understand why a court would overrule an FDA ban on the GED, we need to understand that America and Canada’s residential institutions–and its ABA centres and classrooms–are built on segregating and dehumanizing developmentally disabled people.

Institutions such as the JRC, with long histories of endemic abuse, cannot be rehabilitated or reformed to be “trauma-informed” or “sanctuaries”. They need to be shut down.

Join the movement to #StopTheShock. The American autistic rights group, ASAN, as well as other groups and individuals in the US, are now organizing to challenge the court’s decision and stop the JRC from using shock torture. You can learn more in the coming days and weeks from the ASAN website or on social media using the hashtag #StopTheShock.

Canadian Govt Consulting Document: Combating Phony Autism Treatments

The attached document is a joint submission by A4A and The Campaign Against Phony Autism Cures, Canada to the Canadian Academy of Health Sciences, who is assessing autism services and policy in Canada.

May, 2021

To The Canadian Academy of Health Sciences:

The Campaign Against Phony Autism Cures (Canada), together with Autistics for Autistics Canada, are submitting the attached paper for your review as you assess autism services in Canada. It describes some of the most common forms of autism pseudoscience and the risks they pose to autistic children and dependent adults. It was first written following a request by a provincial Office of the Public Guardian who contacted us because they receive complaints about parents using phony autism “cures” and needed information.

We were not surprised to hear from them. Autistics for Autistics also receives messages from family members of autistic Canadians who are being abused by parents using these treatments, which include MMS, a form of bleach that sellers claim will “heal” autism. As our paper makes clear, the results can be deadly. Thousands of children and dependent adults have experienced adverse events as well as emotional trauma and suffer from PTSD from these phony treatments. Often, there is little protection for the victims.

The Government of Canada’s newly-formed Standing Committee on Science and Research must make it a priority to document and combat autism pseudoscience in Canada……

Read more: 2021_CAHS_Campaign_Against-Phony_Autism_Cures