Originally published in The Record, March 15, 2019:
Arguments in autism debate in Ontario have missed the mark
By Margaret Gibson (professor of social work and social development studies at Renison University College)
Debates about Ontario's autism strategy have been centre stage since Social Services Minister Lisa MacLeod's Feb. 6 announcement of a new funding allocation. The new allocation introduces direct funding for families to purchase therapies, along with income testing and annual and lifetime maximums. Tempers have flared and lines have been drawn, between parents and autism service organizations who argue that new funding maximums fall short of treatment costs, and Conservative MPPs who state the new allocation will address lengthy wait lists.
As researchers, educators, practitioners and family members, we believe these arguments have missed the mark. Debates focus almost entirely on desperate nonautistic parents, and the costs of their children's intensive Applied Behavioural Analysis or ABA-based treatments. In Ontario, ABA remains the only publicly funded approach to autism intervention.
As practitioners, we know that providers often wish they could do more, and many services have relied on this funding stream. As researchers, we have heard from parents about their anger and fear at the limited disability supports available to their children. As family members to people with an autism diagnosis, we relate to frustrations with disjointed and underfunded services. Absolutely, the supports that children and families receive should always be in accordance with their needs, not with where they live, how much the family can pay or how well they can advocate.
But let's remember that autism is not limited to childhood, parents and providers are not the primary people affected by autism policies, and ABA is not the only approach. Ontario has been unusual in its singular focus on ABA-based therapies: other countries, such as the United Kingdom, and other provinces, such as Manitoba, have diversified services that support autistic children and adults in a range of ways.
Many parents and practitioners have expressed an interest in alternatives to ABA. What's more, many autistic people who experienced ABA have strong objections to it, even likening it to abuse or torture. ABA programs are routinely provided to people incapable of informed consent by virtue of their young age or their placement in adult institutional settings. Such interventions often require many hours of work per week at astronomical cost. If a significant number of people who have received this treatment describe it so negatively, we need to consider these voices in public discussions and policy decisions.
The time has come to talk about how we can expand the range of services we provide for autistic Ontarians. Research has shown that ABA providers hold complicated feelings about the interventions they apply, and sometimes feel social and professional pressure to hide their views. Having more frank discussions about ABA will only enrich providers' work, autism programs and the lives of autistic people.
We need to broaden our understanding of what support can mean. Support extends beyond segregated services for autistic and neuro-diverse people and their families. Parents' desperation is often directly related to the inadequacy of resources for their children once they age out of intensive ABA programs.
If politicians want to reduce parents' fears, they should enhance autistic and disabled people's access to education, employment, recreation, community involvement, mental health support, health care and housing. Funds for personal support across the lifespan should be considered. Parents want assurance that their children can learn and grow with consistent supports and go on to live good lives as autistic adults.
Autistic people of all ages are valuable members of our communities. Ontarians need to ask why we have put so much energy into debating ABA funding rather than asking autistic people and their families what they want and creating a society that will include us all.
Margaret Gibson is a professor of social work and social development studies at Renison University College, affiliated with the University of Waterloo; Patty Douglas is an assistant professor at Brandon University; Julia Gruson-Wood is a post-doctoral fellow at the University of Guelph; Estee Klar is a doctoral candidate at York University and founder of the A School Collective; and Wendy McGuire is a social work practitioner and founder of the Neurodiversity Network.