NOTE: We have split our UN report on Human Rights for Autistics in Ontario into sections and are blogging them. Here is the conclusion.
The future: Institutional retrenchment or autistic acceptance?
Despite the negative political climate in Ontario, the conversation about neurodiversity is opening up in the broader culture. Globally, autistic self-advocates and researchers are disrupting the autism industry, claiming space as agents for the ideas–and the data–that will move us in a positive direction. Increasingly, autistic self-advocacy groups and autistic researchers are advising not-for-profits and policymakers as part of best practices. Autistic researchers are also gathering information on the many topics that matter to us but haven’t been studied. Self-advocates and researchers have also had success in building project partnerships that fall completely outside of the industry.
We disagree with Coker Capital group, which describes the autism industry as “poised for consolidation”. As it stands, the autism industry generates billions for companies worldwide, but attempts at consolidation (as is happening in Ontario with ABA dominance) have led to disastrous breakdowns in useful supportive services. Just two per cent of autistic people support the use of ABA, making it a true standout as a therapy being forced on a disabled population that doesn’t want it.
The autism industry has largely maintained the idea of us – autistics – as an abstract: a gene to splice, a set of behaviours to correct, our entire childhoods a measurable outcome in a Gantt chart. But life isn’t really like that. The Coker report states that the “fragmentation” of autism services is a problem for investors. Yet what the consolidation proponents call fragmentation is often actually flexibility, essential to keep (or make) services workable for us. Services for autistics need to be flexible and diffuse.
In contrast to the medical model, consider the flexible approach that reflects autism acceptance and the social model. It includes innovations such as inclusive design in classrooms, sensory-friendly spaces, improved workspaces for retainment, as well as meaningful demography, human rights regulation and enforcement, de-escalation alternatives & trauma-informed care, autistic inclusion in social assistance and jobs legislation, and education for teachers, providers and policymakers that is informed by autistic people. These are all being implemented by governments and non-profits outside of Ontario.
But Ontario remains mired in the idea that services for autistics should be delivered in a consolidated, top-down package. That idea isn’t working. And the stakes are high for our community. Many of us are poor, in pain, and not receiving the services we need. Still others are victims of horrific abuse, patterns that trace back to the era of residential institutions.
The government of Ontario needs to tap into the energy and creativity of the neurodiversity movement. Our policymakers must engage less with the autism industry and more with the actual stakeholders. The Province should be documenting and taking action to prevent human rights abuses through regulation and enforcement, while making it easier to report abuse and encouraging transparency. Finally, the Government needs to engage autistic Ontarians in meaningful consultation as it develops the policies that deeply affect our lives.