2018 Report to the UN, pt 2: The Institutional Mindset in Autism Services in Ontario

NOTE: We have split our UN report on Human Rights for Autistics in Ontario into sections and are blogging them. This section builds on pt.1 (History) to discuss how services today relate to those of the residential institution era.

Present-day: The Institutional Mindset in Autism Services
Although our province’s institutions were closed down, an institutional mindset migrated to the non-profit organizations that now work with IDD and autistic Ontarians.

For example, although Huronia’s farm –where residents would labour without pay—was closed down, it was replaced by farms and factories in the community who collaborated with non-profits to run “sheltered workshops” where IDD and autistic workers help companies turn a profit by working for pennies per hour. And the promise of true housing independence has not come to pass for many autistic and IDD Ontarians, who languish in group homes that foster the same punitive approach towards residents that institutions did.

According to a report by the Ontario Human Rights Commission, the province’s special education system has not changed significantly in 40 years. Special education classrooms in Ontario have many of the hallmarks of the institutional days: including restraints, isolation and systemic exclusions. As one parent told us: “the fact that we choose whether or not to sign a ‘do not restrain’ option at schools each fall is pretty messed up.” Where other jurisdictions are building on concepts of inclusive design to make a safe and welcoming environment for autistic students, these classrooms do not exist in Ontario, save the ad hoc efforts of a few teachers usually spending their own money.

There are nearly four million Canadians with “physical, sensory and cognitive impairments” (about 14 per cent of the Canadian population). Yet we have not been allowed to fully “integrate” following de-institutionalization Instead, many of us lack access to employment, education, housing and adequate medical care. This segregation comes at a huge cost to our mental and physical wellness, as well as our safety.

Autistic people are more likely to be victims of hate crimes, sexual assault and other violent crime. Autistic children and adults are also some of the main victims of violence within schools and group homes. And parents have committed filicide against autistic children in Canada. This abuse is reinforced societally when we are portrayed as burdens on parents, and on society. The research focus on finding an “autism gene” – which would mean parents could discover and abort autistic fetuses – is also a human rights issue. We are deeply concerned about eugenics and its frightening impact, demonstrated currently in Iceland, where parents abort nearly all fetuses screened as having Downs syndrome.

The title of a recent Government document on autism and early interventions used the phrase “pay now or pay later” to describe our life course. The phrase belies the bureaucratic idea that those autistic adults who don’t earn a living wage are merely a burden on the tax system, rather than people with thoughts, feelings, needs and ideas. It is stunning in 2018 that Canadian policymakers would use this approach – and that they would develop any disability policy without consulting the group the policy is supposed to serve.

The institutional mindset is part and parcel of the non-profit autism services model across Canada, which too often marginalizes our community from involvement and consultation, keeping us – and the information we need to share – siloed from the broader discussion. Although there has been some progress in this area, it is still too common for nonprofits to endorse statements like “I am my son’s voice,” or for reports to contain mostly the musings of CEOs and therapists but no autistic voices.

For example, a recent campaign (for national ABA) claims “to speak up for the kids who can’t speak for themselves.” Autistic and disabled people of all ages can express what we need through a variety of communication platforms. And we are saying: don’t speak for us.

In Ontario, many service providers’ approach to autism still follows the medical model of autism, attempting to “fix” behaviours rather than understanding behaviour as communication and then responding to the message (the social model). The medical model, based on the same ideologies that informed our residential institutions, trickles into the broader society. It translates into abuse and exclusion. It hinders good policy. It also creates a code of silence about abuse.

Read the full report