Reframing Optimal Outcomes in Autism

Autism Care

Research
Education
Community
Policy

Research

“Future research needs to focus not only on the biological markers of ASD 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 Spectrum Disorder (ASD) 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, ASD experts from these organizations are coming together to integrate ASD 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 ASD 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 individuals with ASD, along with their families.

MacART’s founder, Stelios Georgiades, serves on both federal and provincial advisory committees about ASD treatment funding.  Along with the wide-ranging expertise of its many ASD 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 ASD diagnosis, treatment, 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.

A new Viewpoint article in JAMA Pediatrics speaks to the need to redefine the term ‘optimal outcomes’ in autism. The Viewpoint, written by MacART co-Director Dr. Stelios Georgiades and colleague Dr. Connie Kasari of the University of California – Los Angeles, argues for the need to rethink what is meant by “optimal outcomes”, which has tended to be defined as those people with autism who have experienced a decrease in symptoms to the point where they no longer meet diagnostic criteria.

However, rather than focusing on reaching milestones compared to ‘typical’ peers, optimal outcomes should instead be redefined in a more inclusive way, with a focus on progress measured by personal goals. Most importantly, those goals should be defined by individuals with autism and their families.

This is discussed further in a blog post on the Autism Speaks website, urging researchers and clinicians to reconsider the goal of autism services. In autism intervention research, knowing when to change something and to what are key questions that the research community is only starting to address. This makes this Viewpoint incredibly timely and important.  It fits within MacART’s framework and goals of advancing autism care through meaningful research; we consider this piece to be a guiding statement in how we can conduct research that is indeed meaningful to the autism community.