Faculty of Health psychology Professor Jonathan Weiss, the Canadian Institutes of Health Research Chair in Autism Spectrum Disorders (ASD) Treatment & Care Research at York, held the first advisory stakeholders meeting recently.
ASD community members attended the meeting, planned by Weiss and the Knowledge Mobilization Unit (KMb), including those from non-profit organizations, government agencies and community service groups, as well as researchers, self-advocates and parents of people with ASD. Dialogue and collaboration between the different sectors of the ASD community to determine the direction of the research by the chair over the next five years was the top business of the day.
“Meaningful applied research begins with hearing from stakeholders about the topics that are important to them and about the best ways to involve them in the research process,” said Weiss. “Today’s meeting was the start of the conversation. We have mapped out priority areas and have advisory representation from individuals and organizations who play critical roles in improving treatment and care of people with ASD across the lifespan – people with ASD, their families, community and health service providers, education, government, and researchers.”
Weiss has several goals he’d like to achieve – having research translated to inform stakeholders about mental health and ASD, studying ways of addressing mental health problems in people with ASD and training the next generation of Canadian ASD researchers and clinicians.
York Distinguished Researcher Professor Debra Pepler delivered the keynote address on bullying and ASD. She told the gathering that children with ASD are more than twice as likely to be bullied as children without the condition, and for long periods of time. It is critical to look to the context where the bullying happens, she said. Peers are present 85 per cent of the time that bullying occurs, and when they intervene, if they’ve been properly educated, bullying stops almost immediately, 57 per cent of the time.
Not surprisingly, stressful environments undermine development, which children with ASD often experience due to their marginalized place in classrooms. Children who bully and who are bullied themselves were found to be at the highest risk for mental health problems, even though most behaviours are driven by a simple human urge: connectedness with their peers.
Stakeholder Group Discussion
“The people who have the best knowledge are not the researchers, but the people ‘on the ground’ who constantly interact with families living with ASD,” said Pepler. The perceptions and challenges around mental health and ASD are issues that communities must mobilize to solve together. Hopefully, with more collaborations, research can be done to address the marginalization of people with ASD in communities across Canada.
Professor David Nicholas of the University of Calgary talked about maternal care for young persons with ASD. Through his research, he has interviewed many families dealing with ASD whose main concerns are not only that the community’s doors of support tend to close if they see signs of difference or struggle, but also that the academic assessments that happen in universities and research organizations will never turn into active solutions.
Thanks to the Spectrum of Hope Foundation and many other sponsors of the chair, Weiss and his research team’s studies can be practically applied. Stephanie Silver-Lublin, of the Spectrum of Hope Foundation, says “we are more than happy to provide an environment where [Dr. Weiss] can translate his research to reach the community.”
Weiss also took the floor, addressing issues to do with emergency services, hospitalizations, and mental health care for adolescents and adults with ASD. In collaborative study led by Dr. Yona Lunsky at the Centre for Addiction and Mental Health, Weiss found that the biggest barrier to accessing appropriate medical and mental health services for people with ASD is the lack of knowledge on where to find them, and feeling that the steps to access services are overwhelming. Many families resort to using emergency services instead, which puts extra stress on Canada’s already overburdened health care system and does not provide any long-term solutions.
The morning was followed by an afternoon group session where attendees discussed agreed upon topics for further research and solutions. The topics they decided to prioritize for research in the future included the impact of mental health on ASD and of ASD on mental health; variables that increase the risk of mental health problems in people with ASD; the importance of evaluating community care for effectiveness and quantifying its long-term health impacts; and identifying and developing best practices for the treatment and care of mental health in people with ASD.
The advisory meetings will continue to guide Weiss’ research and to find the best applications of new findings.
The chair is funded by the Canadian Institutes of Health Research in partnership with Autism Speaks Canada, the Canadian Autism Spectrum Disorders Alliance, Health Canada, NeuroDevNet and the Sinneave Family Foundation. Additional funds from the Spectrum of Hope Autism Foundationand support from York University and ORION’s O3 Collaboration.
For more information, visit the Chair in Autism Spectrum Disorders Treatment & Care Research website.