Autistic Self-Advocacy in Ontario: Unstoppable in 2019 & Ready for 2020!

Photo by Anne Lesserknaus

Autistics for Autistics and other autistic-led organizations have been working hard on making inclusion happen in Canada, removing access barriers, educating the public and working to get policymakers to meaningfully consult us about autism policy. Here is some of what we’ve achieved in 2019!

Policy Advocacy Win: Proposed Legislation to End Seclusion and Restraint in Schools
A4A was proud to work with parent advocates in educating provincial policymakers (MPPs) about seclusion, restraint and other abuse in Special Education settings. (Read our reports to the Ontario Government, the Government of Canada and to the United Nations).

In December, MPP Michael Coteau drafted an Ontario legislative bill to end seclusion and to regulate/track the use of restraint in schools in Ontario. (Read the Bill). Legislators will vote on the bill in the new year.

Currently, there are no uniform standards for tracking, or regulating restraint, seclusion or exclusions in Ontario schools. We have been raising the alarm about this since our founding 2 years ago, as have concerned families across the province. A4A’s reports on restraint and seclusion in special education, as well as the crucial data gathered by Autism Advocacy Ontario (AAO), were the cornerstones of beginning to document and bring attention to the magnitude of this human rights issue in our schools.

We are thankful to our members, to AAO and the incredible parents who knocked on doors at Queen’s Park — and to MPP Coteau for having the persistence to bring this Bill to a reading. We hope it is passed soon and will continue to update about this important movement!!

Policy Advocacy Win: Consultation on the Ontario Autism Plan
In 2019, for the first time in Ontario history, autistic-led advocacy groups consulted with and served in an advisory role to the provincial government on its autism policy. Amazingly, under previous governments, no autistic people were on the community panel at all!

In spring and summer of 2019, A4A members:

  • Met with MPs from all major parties;
  • Met with Provincial Ministers; and
  • Presented a detailed policy report to the Government through our official representative to the Community Consultation Panel on Autism Policy.

Thank you to members of the current government for seeing the need to shift gears and having the foresight to understand that disability policy should not be made without consulting the very disabled people it is designed for. There were 2 autistic representatives on the Panels, who represented 10 per cent of panelists. It’s a great start (coming from 0%) and we are looking forward to sharing more of our resources, ideas and experiences with provincial policymakers in the coming years.

The CBC and AMI reached out and interviewed the autistic panelists. Thank you to the wonderful reporters who dug into the story with openness and curiosity! We were proud to share these stories with our families, friends and community.

By contrast, the Toronto Star never interviewed the autistic panelists, but rather labeled autistic panelists as “outsiders” and A4A as “anti-science”. The Star also referred to a mainstreaming change, where Ontario Kindergartens would be welcoming less than one autistic student on average, as a dangerous “influx” of autistic students. This is extreme bias in reporting. The Star would not retract clear factual errors and its Public Editor did not even respond to letters by autistic Ontarians. Please boycott the Star.

Education: Groundbreaking Initiatives
in 2019, A4A was active in education outreach throughout our communities. A4A members:

  • Led neurodiversity workshops with LiveWorkPlay and Viability Employment;
  • Presented about AAC and communication rights at the Ontario Parliament’s Disability Consultation Forum;
  • Presented at SpectrumWorks Job Fair;
  • Presented on access to health care at University of Toronto medical school and at the Centre for Addiction and Mental Health (CAMH);
  • Took part in the access and inclusion panel at Arch Disability Law’s Annual General Meeting;
  • Met with Centre for Independent Living Toronto to discuss children’s rights and plan our Little Free Neurodiversity Library, which will launch in spring 2020!

Neurodiversity Flag Raising at City Hall
On April 15, for the first time in history, the Neurodiversity Flag flew at a City Hall in Ontario! Taking a cue from activists around the world, we gathered and raised the rainbow infinity flag to celebrate our pride. Afterwards, we had an awesome hangout–with cake–making this historic moment even sweeter. Read more about the event here.

Community: Building Connections and Coalitions
A4A became an official International Affiliate of the Autistic Self-Advocacy Network in 2019!! We also co-founded Canada’s first coalition of autistic self-advocacy groups, Autistic Advocates’ Coalition of Canada. We are excited to be supporting and connecting with ASAN and for the powerful coalition we have built nationally with Autistics United Canada and London Autistics Standing Together.

Our parent auxiliary and general membership continue to build bridges across generations and between autistic adults and neurotypical parents. We join together for discussion, culture and political advocacy, perhaps most importantly this year to educate and inform about seclusion and restraint.

We connected across disabilities with a broad range of disability rights groups in solidarity and connection. We also did activism across many intersecting identities—standing against racism, taking part in LGBT pride events, marching with our sister Greta Thunberg in her Montreal and Calgary rallies and joining in solidarity against the concentration camps at the US/Mexico border at the vigil outside the US consulate in Toronto.

Vigil and Direct Actions
In addition to joining in the above direct actions, A4A organized the Toronto vigil for the International Disability Day of Mourning, which happens in cities around the world on March 1. At the vigil, advocates comes together to remember disabled victims of filicide – people who were murdered by their family members/caregivers. It is a difficult but important day. Thank you to everyone who came out to remember and to say: never again.

We also organized a counter-protest to the Autism Speaks fundraising walk. Autism Speaks supports research into eugenics trying to prevent people like us from being born. Autism Speaks Canada gives more than $500,000 per year to MSSNG, the world’s largest Whole Genome Autism Study, attempting to identify autism-linked genes which, if found, would be part of prenatal testing and eugenics. Also, few of AS’s donor dollars go to services; 51 percent of their Canadian budget is consumed by overhead costs, well beyond the reasonable range according to charity watchdogs. We are thankful to all those who counter-leafleted and also those who offered support.

Several of our members also stood in counter-protested to Ontario Autism Coalition rallies. Like most other grassroots autism groups, A4A does not support the OAC’s mandate (for autism funding to be only for ABA). Our members leafleted and talked with attendees about different approaches to policy and about inclusion and the Neurodiversity movement.

Our Reports: Blueprints for Genuine Reform
The old model of autism policy in Canada goes something like this: “Do the same thing, but more of it…and maybe with a new name.” We don’t buy into that approach at all: it is the reason that 80% of federally funded housing for autistic and IDD folks is still segregated housing, and why more—not less—autistic and IDD students are being streamed into segregated classes in this country. We need a total paradigm shift in Canadian autism policy and autistic-led groups will be a major part of it.

A4A wrote a report to the Government of Ontario, outlining needed reforms in the following areas: AAC/communication access; early childhood programs; inclusive education; transition to adulthood; employment; housing; health care; and reform to autism services and funding models. We consulted with experts on all areas of the report and shared it with leaders in every party at Queen’s Park. We also met in person with our MPPs and presented our recommendations at public forums led by them. Thank you to all our members who created, researched, wrote, communicated and showed up to advocate!

A4A also delivered a Report and Recommendations on autism and disability policy to the Government of Canada. We are working directly with our own MPs in the hopes that the Government of Canada will begin to shift its course away from segregation and towards inclusion and acceptance of autistic and intellectually/developmentally disabled (IDD) Canadians.

Pro-Science Advocacy
Like other autistic self-advocacy groups, A4A are strong advocates for science and against autism pseudoscience. Our Physicians’ Guide to Autism Pseudoscience is an updated companion to our Report on Autism Pseudoscience and our reporting to the UN about this issue.

Our members have worked to keep children safe from phony autism cures that include bleach, turpentine, hyperbaric oxygen chambers, THC, severe food restrictions, phony stem cell “cures” and chelation. One of our members is currently advocating to stop chelation as an autism treatment in Ontario and the case is going to a judicial review in 2020.

What’s coming up in 2020?
In 2020, we will have big news about open hearings into human rights in special education. It is time to bring transparency to the special education system in Ontario!

A4A will also be rolling out our traveling Neurodiversity Lending Library, traveling around the province and permanently housed at CILT.

We will be doing more outreach on AAC and communication rights, employment, housing, inclusive education and access to health care.

We will continue to support human rights for children …despite being told by one MP that we should “just focus on autistic adults.” We were all children once and we remember and know very well the systems that keep autistic and IDD children trapped in segregation–and that have led to segregation, poverty and inequality in our own lives. We owe it to the next generation to do all we can to pave the way for equality, access and inclusion.

Our activism is strong because we do not stay confined in the tiny world of in-group self-interest. We are united with all disabled people, of all backgrounds, ages and identities, towards a more just Canada. We stand shoulder-to-shoulder with parents and families who want equality, inclusion and safety for their children. As part of the neurodiversity movement we are motivated by concern for human rights, not profit. In that way, our movement is a disrupter of the existing autism service industry. Because at the end of the day, inclusion mainly requires an investment from the heart.

We hope you will join and support us in 2020! Thank you.