Speech to the Arch Disability Law Annual General Meeting

 This is the speech that A4A co-founder Anne Borden gave at the Annual General Meeting of Arch Disability Law on Wednesday evening. A4A is grateful to be included in this event and we look forward to working with Arch and others in this important movement!

Anne: Thank you so much for inviting me. Thank you also to Chris, Debbie and Monique, our ASL interpreters. It’s an honour to be here with the other panelists!

I’m Anne Borden, a co-founder and member of the Executive of Autistics for Autistics, a disability self-advocacy organization. Autistics for Autistics–also known as A4A–advocates provincially in Ontario and New Brunswick, as well as nationally. We are part of the national Autistic Advocates Coalition of Canada and an international affiliate of the Autistic Self Advocacy Network–ASAN.

Since our founding in 2017, we have built a membership of autistics and allies around 4 core issues: school inclusion; housing and independent supported living; employment access; and accessible health care for our community.

Our community faces extreme prejudice, stigma and segregation in school, housing and life. It is perpetuated in part by the main childhood therapy system in Ontario-Applied Behaviour Analytics or ABA, which is based on a segregation model. Autistic toddlers and preschoolers are removed from their home communities and sent to segregated ABA therapy centres to supposedly learn “life skills“–but because they are so segregated, by the time they enter school neither they nor their peers know anything about each other or how to relate to one another…and so many end up segregated again into special education.

According to a recent report by the Ontario Human Rights Commission, the special education system in Ontario has not changed meaningfully in 40 years. Restraint and isolation rooms are still used and children are often neglected or abused in these classrooms. There is no universally mandated or systemized tracking of restraint or isolation, no cameras in classrooms and no real accountability around the use of restraint and seclusion.

From the segregated classroom, many autistic youth graduate into a segregated life, marginalized in group homes without opportunities for paid jobs, post-secondary education or independent supported living. Our suicide rate is nine times higher than non-autistic people and I believe this is in large part because we are so stigmatized and segregated.

Poverty is the norm for autistic people in Ontario. Housing insecurity is a major issue as is abuse in group homes, which, like the special ed classroom are not being regulated in this province. Indeed, there are no provincially mandated, uniform means for documenting use of isolation or restraint in group homes or even a proper universal vetting system for workers in group homes or private special-ed or day program settings.

In Ontario, around 80% of government housing funds for IDD individuals go towards segregated group homes instead of independent supported living, despite evidence that independent living is a better approach and despite voices from the community asking for it. Neither the capacity nor the voices of IDD Canadians are being honoured under the current system.

Autistics of Colour face racialized discrimination, disproportionately targeted for disciplinary actions in school and the juvenile justice system. As well, police violence against autistics, especially autistics of colour, is a major health and safety issue. We all know what has happened when a Black man has reached for his wallet when encountering police. Now imagine he is also flapping, to calm himself. A natural way of moving and being in the world: criminalized due to bias and ignorance. Two-thirds of police officers report they have received no training in communicating with autistic people. Officers need to be trained in trauma-informed, disability informed responses. Autistic and disabled advocates know how to do this, and have the resources, but governments too often instead rely on charities that are out of touch with our community needs.

25-30 percent of autistic people are non-verbal or semi-verbal and need access to assistive communication technologies (AAC), yet many are denied access for years or even their whole life. Some behaviour-based therapies actively discourage the use of AAC in a vain attempt to “force” speech—other times, schools and teachers are just not educated about how to interact with AAC users, since there is no training. The average amount of time a non-verbal child has to wait for AAC access in Ontario is 2 and a half years. That being the average, it means many more have to wait even longer than that for communication access. Also, because many people do not know the basics of how to communicate with a person who is using AAC, AAC users also face barriers to access to health care, employment and other areas of life.

We may have any other co-occurring disabilities as well; the most common one is epilepsy. Many also suffer from anxiety and PTSD due to abusive therapies they had as children. Our bodies move differently, we have sensory considerations and we communicate differently; unfortunately, all of these are still seen by the mainstream autism service agencies in Ontario as so-called deficits to try and “fix,” rather than disabilities to accommodate. Over the next few months you will hear a lot of people talking about the need for a “National Autism Strategy.” Autistic self-advocates nationally are not advocating for this strategy, which keeps autism silo’d from other disabilities. We are advocating for a National Disability Strategy, inclusive of all disability, with disabled self-advocates as leaders in assessing approaches and building a plan that works.

Autistic self-advocates in Canada exist as a group, in part, to name a terrible truth: that billions of tax dollars have been spent on “autism” policies without any consultation from autistic people or even any meaningful research and data on our needs.  For any real progress, we need a complete culture shift around autism services in Ontario, towards governments drafting policies that respect our right to self-advocacy and honour our access needs.

But change is coming. Here is some good news: although until this year autistic self advocates were never included in consultations with the provincial government, that has changed. In Ontario, the government has put two autistic people on its autism policy Community Consultation panels. Having two autistic people, which is 10% of the community panel on autism, is actually a really big deal. It has set a precedent and I hope that soon we will have more than just two self-advocates on the panels. I think there is a light at the end of the tunnel, but still a long way to go. We’re going to keep moving ahead and we stand in solidarity with all other disability groups as we move forward together. Nothing about us without us.

Thanks for listening.