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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

Community Partnerships: We Can’t ‘Agree to Disagree’ about ABA

Trigger warning: One hyperlink (when clicked) includes photos of abuse of autistic people. It is flagged with a TW.

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As an autistic-led organization, we share space and conversation with many groups and individuals who have different perspectives than us. Often, there is much that we can learn from each other.

However, we will not share space with organizations whose belief systems are fundamentally based on dehumanizing autistic and developmentally disabled people. One of those systems is Applied Behaviour Analysis or ABA.

So when we were asked to be a community partner at the  2021 Reel Abilities Film Fest, we were at first honoured—then shocked and upset to see that an organization that supports ABA, Autism Ontario, was added as a co-sponsor. Autistics for Autistics has withdrawn its sponsorship and the two autistic speakers have withdrawn from the panel.

Reel Abilities is an important festival with quality films and they had good intentions in contacting our organizations. But like many groups, they don’t understand the degree that ABA and the medical model of autism have caused trauma, pain and death to autistic/intellectually disabled people. We would like to take this moment to educate the broader disability community about how ABA abuses and dehumanizes autistic children and adults.

ABA: Then and Now
ABA was invented by a man who also founded a form of gay conversion therapy (gay conversion therapy is illegal in Canada). O. Ivor Lovaas, the founder of ABA, was also the founder of The Feminine Boy Project, on which many current gay conversion therapies are still based. Lovaas, who is still celebrated in the ABA industry, had this to say about us: “You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense – they have hair, a nose and a mouth – but they are not people in the psychological sense.” [TW on following hyperlink: photos of abuse] Lovaas abused his patients, advocating harsh aversive techniques such as hitting, withholding physical touch and attention, isolation, and giving electric shock therapy in a shock room, where the floor was inlaid with metallic strips.

While it might be tempting to think of Lovaas’ treatments as a “thing of the past,” they are not. An ABA school in Massachusetts, the Judge Rotenberg Center, has been under fire from the US FDA—as well as Amnesty International—for shocking children repeatedly. At least six residents have died at the centre.  After one boy was shocked 18 times for not taking his coat off “on time”, the FDA stepped in and banned the practice in 2020 after years of issuing warning letters. However, that has not stopped the ABA industry from promoting the Judge Rotenberg Center’s shock torture “aversives”.

In fact, at the 2019, 2020 and 2021 annual conferences of the American Institute of Behaviour Analysis, the Judge Rotenberg Center was a featured presenter, including presentations on their legal battles in favour of continuing shock torture. No ABA professional association has ever spoken against the practice.

ABA in Ontario
In Ontario, autistic children are held in prone restraint, locked in closets and denied food and beloved objects as part of ABA programs. They are treated as broken versions of “normal” to be fixed rather than as human beings deserving of respect and care. Autism Ontario has never spoken against ABA; in fact, it leads ABA workshops, hosts ABA seminars and even lobbies the government for increased funding for ABA. With all of the problems with ABA–including the rather significant fact that it was debunked by the field of psychology 40 years ago–one would think that “autism” charities and societies such as Autism Ontario and Autism Canada would distance themselves from the practice of ABA. Yet both continue to endorse it.

Why? Because their organizations make money from partnerships with the ABA industry. It seems like making money is more important to them than doing what they know is right and cutting ties with the ABA industry.

There is no gray area—no “agreeing to disagree” when it comes to ABA. Its many abuses have been well-documented (see the hyperlinks here and here, for example). For this reason, more than 90 percent of autistic people polled do not support ABA.

Disability organizations and other community groups: Please learn about ABA. Ask when you seek sponsor groups whether they support ABA. Consider how triggering it is for autistic people to be asked to partner with groups that believe we are sub-human. Support autistic people by boycotting ABA organizations.

For too long, autistic people have been asked to share space with oppressive organizations to “tell our story” or act as tokens, suppressing our own pain and PTSD to do so. We’re not doing that anymore. We have our own organizations, working for human rights. It is time for the old “autism” groups to step down and make way for groups that centre human rights and autistic acceptance.

Looking Ahead
If you are a festival-goer and you have tickets to Reel Abilities, we hope you can attend and enjoy the screenings of these great films! We also hope this experience can be a learning moment for Reel Abilities and other programmers.

–The Executive Board of Autistics for Autistics, Ontario (A4A)
and Taryn Hamlyn, A4A member