We are blogging each section of our Report and Recommendations to the Ontario Government’s Autism Advisory Committee. Read the full report here: Ontario Recommendations- Inclusion is the New Gold Standard
Autistic Self-Advocacy and the Neurodiversity Movement
Autistic self-advocacy can be summed up in the phrase nothing about us without us. Put simply, we reject the segregation and barriers that still exists in schools, employment, housing and public life.
The autistic self-advocacy movement is based on a few facts, including:
- We will always be autistic.
- We want to like and feel good about ourselves, not be told we’re broken, toxic and wrong.
- With simple accommodations, we can be included in school, work and all society.
A4A is an international affiliate of the Autistic Self-Advocacy Network (ASAN), which was formed in the US in 2006. Now based in Washington DC, ASAN plays an active role in the development of services, programs and policy. They consult with media (for example, members of ASAN consulted in the development of the autistic character, Julia, for Sesame Street). They are also activists, able to mobilize in the thousands around human rights issues. Globally, autistic self-advocacy groups are taking on a greater role in government advising and consulting, especially in the last 5 years.
Like biodiversity (our interconnectedness across biological differences in the ecology of our earth) neurodiversity points to the reality of “all kinds of minds” and their necessity for our survival as a species.
- Neurodiversity is a scientific, biological fact, not a “controversy.”
- The neurodiversity movement is about pride, inclusion, access and human rights.
- The logo of the international neurodiversity movement is a rainbow infinity symbol.
The Autism Industry: Due for a Disruption
As we’ve outlined in this paper, there is an industry around autism—and much of the industry is based around old , segregationist ideas that harken back to the era of residential institutions. We disagree with Coker Capital group, which describes the autism industry as “poised for consolidation” (into large ABA providers). As it stands, the autism industry generates billions for companies worldwide, but attempts at consolidation (as was happening in Ontario) have led to disastrous breakdowns in useful supportive services.
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. As most parents can attest, services for autistics need to be flexible and diffuse.
The autism industry is facing a disruption because it has been based on segregation and people want inclusion. Think of recent innovations such as inclusive design in classrooms, sensory-friendly spaces, improved workspaces for retainment, de-escalation alternatives & shifting policy priorities towards autonomous living. Where can the ABA/IBI model even place itself within this new schema? It can’t. That’s why it fights with inclusion movements, because it can’t come to terms with its own obsolescence nor the fact that policymakers have begun to diversify services, to engage less with the old autism industry and more with new models and ideas.
We are all stakeholders in this change. Inclusion involves the whole community. Policymakers can foster and encourage this by continuing to consult with end users and drawing upon community partners outside of “autism services” for programs. Part of the work of policymakers now is to identify the best community organizations that prioritize inclusion, and put in systems of accountability for schools, employers and service providers.
Inclusion in Ontario means we do things differently than before. We let go of old systems. We let go of old methods that are obsolete or counter-productive. We bring in new people and new energy. We redefine the gold standard of autism services, away from the segregation model. Now, the gold standard is inclusion. The gold standard is connection. The gold standard is community.
Thanks for reading and considering our recommendations!
–The A4A Team