Engaging stakeholders in autism research agenda helps ensure relevance

June 9, 2015

Parent and stakeholder input has helped direct the research program developed by Autism Treatment and Care Chair Dr. Jonathan Weiss.

At his second annual stakeholder meeting in Toronto Nov. 7, 2014, Dr. Weiss drew participants from across Canada to comment on his work, and to release the results of the Canadian Autism Spectrum Disorder Alliance (CASDA) national parent survey. NeuroDevNet's KT manager, Anneliese Poetz, attended the event and has released a video about the importance of the consultation.

"I had a vision of what I wanted to study," Weiss said of the launch of his chair in 2013. "The community let me know...that I should study what already exists" in terms of programs and services already on offer.

Doug McCreary, a parent of two children with ASD said participating in the discussion "is important for me, to help have a voice in where the research goes."

Senator Jim Munson and MP Mike Lake (Edmonton-Mill Woods-Beaumont) both attended the meeting, and spoke to the importance of parent perspective and research working together to inform and improve policy and services for families and their children with autism. 

"It takes a community, and a large community of Canadians," said Dr. Weiss, "and that's what we're trying to achieve."

"His stakeholders come from across Canada," added NeuroDevNet Scientific Director Dr. Daniel Goldowitz. "and I think that's the power that Jonathan (Weiss) can have."