Observations while holding a Canadian chair in autism research: The good, the bad, and the… future

Observations while holding a Canadian chair in autism research: The good, the bad, and the… future

By: Dr. Jonathan Weiss

In 2012, I was awarded with a research chair from the Canadian Institutes of Health Research in partnership with Autism Speaks Canada, the Canadian Autism Spectrum Disorders Alliance, Health Canada, Kids Brain Health Network (formerly NeuroDevNet) and the Sinneave Family Foundation. The goal of this chair, and my overall program of research, has been to support the mental health of people on the spectrum[1] and their families across the life course. I’ve summarized my activities and outputs over the years, including the many community collaborations, training initiatives, interventions, and knowledge mobilization activities, so I won’t take the time this World Autism Awareness Day to repeat that information. You can also see a lot of these outputs on the ASD Mental Health Blog, including lay summaries, videos of talks, and other interesting links about autism mental health.

Funding for the chair award has, for all intents and purposes, ended. So I find myself reflecting on what I’ve seen and learned from the autism community over the last 5 years. Here are some of my thoughts on the Good, the Bad, and the Future, in a 3-part post starting on the 11th Annual World Autism Awareness Day. Let’s start with “the Good”[2]:

The Good:
Autism awareness:   It’s clear that we have seen a surge in the awareness of autism over the last 5 years. There’s been an increase in the representations of autism within pop culture. While the autistic community has important critiques about these portrayals, there is no question that autism has been within the mainstream media’s narrative for some time now, and has only grown. In the last year, I can recall multiple fictional TV series, documentaries, and books, and regular features in the local, national, and international news. Such awareness is important to keep the public discourse on autism strong and forward thinking. It is a critical component to successful advocacy. I’ve noticed greater awareness specifically around the mental health challenges that many people on the spectrum experience (and what people with autism and families living with autism have known for a long time), including in clinicians, researchers, trainees, and systems of care. This is needed if we are to improve the capacity of our system to support mental health.

Diversity in neurodiversity: The growing awareness also extends to recognizing that there are many manifestations of autism (a greater awareness of a spectrum or kaleidoscope of autisms), and more than ever, we are recognizing the diversity within the spectrum and across the life course. Research on mental health and autism has also diversified. I have seen greater focus on women on the spectrum, on adults, on factors that help people remain resilient in the face of stressors and adversity. There has also been an increased emphasis on ensuring that autistic people are involved in setting research directions, and in conducting research. Five years ago, when people thought of mental health in autism (if they did at all), the discourse was centred almost exclusively on anxiety. While of course still critical, it has extended to a focus on other very important topics, like suicidality, emotion regulation, mental health service utilization, and family wellness. I have also seen a shift in language that reflects the diverse ways that autism is conceptualized; as a disorder, as a difference, as a disability. While I can dedicate an entire post to just this kind of discussion, the fact that different people appreciate different terms reflects just how broad the spectrum is.

The funding: I know our systems of care do not provide sufficient support. And that waitlists are too long. But we have also seen landmark announcements for funding in autism research and care in Canada. The previous Conservative government, through the Public Health Agency of Canada, funded a Canadian Autism Partnership Working Group, to help build a case for a National Strategy on Autism, as well as impressive investments into employment supports for adults on the spectrum. While a Canadian Autism Partnership plan was not ultimately funded, the current Liberal government did announce funding for autism-related endeavours at the federal level, including to the Public Health Agency of Canada to support community-based projects, help reduce stigma, and support the integration of health, social and educational programs, and to the Miriam Foundation and Pacific Autism Family Network for the formation of the Autism-Intellectual Disability National Resource and Exchange Network (AIDE), which aims to provide credible and evidence-based resources for individuals and families living with autism and with intellectual disabilities. There has been major funding announcements at provincial levels, such as in Ontario, Quebec, and Nova Scotia. Private foundations have also made major funding announcements into autism, including broad support from Autism Speaks Canada, the Sinneave Family Foundation, the launch of the Pacific Autism Family Network, and funding from the Azrieli Foundation in Montreal and Toronto, to highlight just a few Canadian initiatives. These are just a few of the Canadian examples that come to mind over the past 5 years. I think it is fair to describe the collective application of funding as unprecedented. With great investments come great expectations, and certainly great responsibility, and I am sure people living with autism, families, and service providers are eager to see the returns on these investments in the form of improved quality of life and associated meaningful outcomes.

The cooperation: The Canadian autism community moved closer to partnership and cooperation towards shared goals. I’ve had the pleasure to share my learnings about mental health interventions with clinicians across the country, who are better able to continue to innovate from where I have left off, as opposed to reinventing the wheel. People worked together to build off of what each other were doing well, learned from each other’s mistakes, shared and linked information and made this more accessible. In the research realm, Kids Brain Health Network brought together Canadian autism researchers with those working in other areas, as has the more recently announced CHILD-BRIGHT Network. At the provincial level, the Province of Ontario Neurodevelopmental Disorders Network has done similar cooperative research across areas. These are in addition to the more informal collaborations that researchers engage in all the time. Increasingly, cooperation has occurred with a broader group than just researchers; we are engaging in meaningful and ongoing consultation with the autistic community, to make sure there is enduring partnership. I think tents can be opened wider to further bring in a broader biopsychosocial perspective, with a greater number of methods, disciplines, and stakeholder-driven directions, so that real evidence-based change will occur in ways that resonate with autistic people and their families. It’s great to see this kind of collaboration occurring. In situations of finite resources, it’s the only way to truly make a difference.

So these are some of my thoughts on the “Good” for World Autism Awareness Day. Let’s show our awareness, appreciation, and acceptance by working together to bring about more. Since the moment I was awarded the research chair, I was keenly aware of the need to make sure my work was driven by autistic people and families. I’ve learned from this process, and tried to give back through research in ways that resonated with the community. I look forward to more learning, and to more collaboration.

Have other positives you think I should have included? Feel free to let me know, and follow me on twitter @DrJonathanWeiss. And stay tuned for my thoughts on the “Bad” and the “Future”.

[1] You may notice throughout my post that I at times use person first language (e.g., person on the spectrum), and at other times use identity first language (e.g., autistic person). I recognize the value of these different ways of talking about autism, and try to use them equally and with respect.

[2] The things I am posting about did not all start in the last 5 years. You may have a different list of what would you put in each section. You may even think that things I’ve put in one section should actually be in another!