York’s CIHR Chair in Autism Spectrum Disorders (ASD) Holds First Stakeholders Meeting to Shape ASD Research

Dr. Weiss

Dr. Jonathan Weiss

On Tuesday, January 29, Dr. Jonathan Weiss, an Assistant Professor in the Department of Psychology, Faculty of Health, and Canadian Institutes of Health Research (CIHR) Chair in Autism Spectrum Disorders (ASD) Treatment and Care Research at York, opened the first advisory stakeholders meeting for many in the ASD community in Canada, including nonprofits, government agencies, community service groups, researchers, self advocates, and parents of people with ASD.

Planned by Weiss and the Knowledge Mobilization Unit (KMb) at York University, the meeting  began a dialogue and collaboration between different sectors of  the ASD community to determine the direction of the research that the Chair should explore in the next 5 years. Weiss’  objectives include translating research 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.

“I’m so proud of Jonathan [Weiss] for getting this Chair and for our partnerships,” said Harvey Skinner, Dean of the Faculty of Health. “When you help someone up a hill, you get closer to the top yourself, and that is the sort of community mobilization that we are trying to start here today.”

“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 Dr. Jonathan 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.”

The meeting began with several speeches by prominent ASD academics who discussed current research, including the keynote address by York  Psychology Professor and Distinguished Researcher Dr. Debra Pepler on bullying and  ASD, followed by Dr. David Nicholas from the University of Calgary on  maternal care for young persons with  ASD, and ending with Dr. Jonathan Weiss on emergency services, hospitalizations, and mental health care for adolescents and adults with ASD.

Dr. Pepler’s statistics on bullying were disturbing: 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 that we look to the context where the bullying happens. Peers are present 85 per cent of the time that bullying occurs, and when they intervene, if they’ve been properly educated, bullying stop 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.

“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 Dr. 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.

Dr. Nicholas’s research has taken him through countless interviews with 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, Dr. 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.”

These advisory meetings will continue to guide Dr. Weiss’ research and to find the best applications of new findings. For example, 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.

Stakeholder Group Discussion

The morning session was followed by an afternoon group session that attendees used to discuss agreed upon topics for further research and solutions. The topics that the groups 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 Chair is funded by the Canadian Institutes of Health Research in partnership with Autism Speaks Canada, the Canadian Autism Spectrum Disorders AllianceHealth CanadaNeuroDevNet 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 on the Chair, visit http://asdmentalhealth.ca/