Perspectives from the 2018 CASDA Leadership Summit

Autism Care

Research
Education
Community
Policy

Research

“Future research needs to focus not only on the biological markers of autism but also include data about functioning, participation, and environmental barriers and facilitators.”

Dr. Olaf Kraus de Camargo  //  Developmental Pediatrician

 

MacART is laying the foundation for creating a systematic way of linking scientific research on autism at McMaster University to clinical practice at McMaster Children’s Hospital.

The physical proximity of McMaster Children’s Hospital, Hamilton Health Sciences, and McMaster University has a number of characteristics that provides the rare opportunity for collaborative research. Taking advantage of existing university and clinical infrastructure and cross-appointments for clinicians at the university, autism experts from these organizations are coming together to integrate autism research into clinical practice.

The focus of MacART members’ research is in the areas of basic science, clinical practice, clinical research, epidemiology and statistical modelling, knowledge translation and exchange, and social science research. By promoting the collaboration of stakeholders across disciplines, MacART is reducing barriers to implementing research in clinical practice, with the goal of advancing autism care through meaningful research.

Learn more about our research HERE.

Education

MacART members are now supervising more than 50 research trainees at the undergraduate, graduate, and postgraduate levels, and are engaged in the mentoring of junior and intermediate faculty members.

In the future, we intend to establish research and clinical training programs for students in McMaster’s undergraduate medical, health sciences, and psychology programs, and for residents and fellows in Pediatrics and Psychiatry.

By training and mentoring emerging researchers and practitioners, we will help to solidify their understanding of and commitment to using basic science to inform their clinical practice, and to use their clinical experience to help formulate research questions. It is our belief that involving these learners in MacART educational activities will promote their use of practices that advance autism care through meaningful research.

Community

“Our scientists are working collaboratively with local clinicians to generate the evidence needed to improve autism services. This symposium is a great example of McMaster’s community engagement efforts.”

Dr. Patrick Deane // President & Vice-Chancellor // McMaster University

 

The community engagement component of MacART strives to work with stakeholders and involve them as partners in every step of the research process.  By doing so, the questions that drive research begin to change. They become more meaningful because they address the real day-to-day challenges faced by children and their families, and the clinicians supporting them.

MacART aims to increase participation and involvement of members of the McMaster and Hamilton communities in the research process. With community members driving the research, new and relevant knowledge can be produced to bridge the research-to-practice gap in autism and advance autism care through meaningful research.

Policy

“People whose lives are connected to the challenge of autism can share knowledge – from clinicians to educators to parents – and what an amazing opportunity that is. We have a real opportunity to translate challenges into research, and research into practice that will help families living with autism.”

Rob MacIsaac  //  President & CEO // Hamilton Health Sciences

 

Policies should be created using the best available evidence that make positive impacts on the lives of Autistic individuals, along with their families.

MacART’s founder, Stelios Georgiades, serves on both federal and provincial advisory committees about autism supports/service funding. Along with the wide-ranging expertise of its many autism experts, MacART is set to act as a highly credible source of evidence-based information to influence and inform public policy about the provision and funding of autism diagnosis, services, and family supports.

MacART will continue to find ways to collaborate with policymakers to both learn more about the policymaking process, and to contribute our expertise and knowledge to inform policymaking, in order to advance autism care through meaningful research.

By Dr. Stephen Gentles and Dr. Vivian Lee

It was fitting that the 2018 Canadian Autism Leadership Summit, hosted by the Canadian Autism Spectrum Disorders Alliance (CASDA)happened in Ottawa, Canada – the epicenter of political action and the host site of national strategies and social change. The meeting was an intense but incredibly rewarding two days of learning, networking, and action. Representatives from the federal (Senators and MPs) and provincial governments (ministry representatives) were present as well as researchers, clinicians, autistic advocates, family members, frontline workers from across Canada – a passionate group of individuals advocating for a national strategy in autism care.

Through the well-curated panels, we learned about exciting national collaborations and projects, as well as the most acute needs in autism.  Presenters painted pictures of how ambitious collaborations were implemented in their jurisdictions to achieve complex restructuring of systems to improve care. We heard from clinicians, researchers, and self-advocates about the dire lack of mental health support for those with ASD and the near absence of assistance for families in Canada’s rural and remote indigenous communities.  A session on accessibility legislation helped us understand how the simple concept of inclusion is so important to solving the problems that were so emotionally brought to life by the self-advocate panel later in the summit. We listened intensely to the lived-experience of #acutallyautistic individuals whose voices we all need to hear, recognize and respect as we move forward in our individual endeavors. 

Importantly, beyond learning and listening, we also discussed solutions and paths of action.  Near the end of the summit we faced crucial questions in a peer-to-peer session about the future of a National Autism Strategy, which seems to be at a pivotal crossroads. The Summit made clear how such a strategy is poised to make profound differences in the lives of Canadians affected by ASD. These are exciting times in autism policy, where, in the opening words of Senator Jim Munson, “We have work to do.”