Inform Every Autism - Update June 2016

Inform Every Autism - Update June 2016

New resources to build connections between BC researchers and those affected by autism spectrum disorders have been released by the Pacific Autism Family Centre (PAFC) its research arm “Inform Every Autism” and its partners.

New resources to build connections between BC researchers and those affected by autism spectrum disorders have been released by the Pacific Autism Family Centre (PAFC)  its research arm “Inform Every Autism” and its partners.

Three new reports examine the current landscape for autism research in BC and how it can support the needs of individuals and families living with autism.

The reports represent a collaborative effort by the ad hoc Autism Research Steering Committee.  Committee members include: BC Institute of Technology, Child & Family Research Institute, Emily Carr University of Art and Design, Pacific Autism Family Centre Foundation, Genome British Columbia, Michael Smith Foundation for Health Research, BC Ministry of Children and Family Development, University of Victoria, and University of British Columbia.

“Building connections in the BC autism research community is the goal of the work behind these three new reports,” says Dr. Diane Finegood, MSFHR President and CEO and co-chair of the ad hoc Autism Research Steering Committee. “We are all working together to develop this opportunity to build a more collaborative and family-centred approach to autism research.”

The PAFC, currently under construction in Richmond, will bring together resources for research, information, learning, assessment, treatment, and support, to help address the needs of those affected by autism spectrum disorder across BC.

The family’s viewpoint: asking families what they need from research

One of the PAFC’s primary aims is to connect the needs of families with autism research. To better understand these needs, the health design lab at Emily Carr University of Art and Design and the PAFC Foundation hosted a series of workshops with families. Together, researchers and families identified 12 main areas where families would benefit from additional research.

“[We] create linkages between the needs of individuals with autism spectrum disorders and their families and the research and innovation communities,” says Sergio Cocchia, President of the Pacific Autism Family Centre Foundation. “Understanding and communicating those needs through an inclusive dialogue across our province and beyond is fundamental to everything we do.”

A recap of the input received from families can be found in the full report and summary report. An interactive online resource mapping autism research to family needs will also be made available.

Helping the PAFC develop its research vision

Engagement with the BC research community is part of the PAFC’s vision to be "informed by research and to inform research". To further this goal, members of the committee planned a “BC Autism Research Blue Sky Meeting” on January 29, 2016.

The session aimed to help researchers with an interest in the autism spectrum disorder field to:

• learn more about the PAFC and its vision;

• develop a common understanding of current research on autism in BC; and

• engage in a discussion of the opportunity for autism research connected to the PAFC.

Short presentations from researchers focused on topics ranging from genetic studies to therapies to population health. Breakout discussion groups allowed attendees to identify similar and complementary expertise, opening the door to collaboration.

Findings from the day have been summarized in a report on the proceedings.

Mapping the autism research landscape

To help guide future planning exercises aimed at reducing the health and economic burden of autism in BC and beyond, an Asset Map of Research Resources for Autism Spectrum Disorders was produced. It provides a snapshot of BC assets in the field.

Key findings of the asset map show that BC has the following autism research assets:

  • at least 58 researchers and 21 trainees
  • eight Canada Research Chairs
  • strength in psychosocial/behavioural research
  • at least eight research networks and centres of excellence, including NeuroDevNet NCE

The report highlights existing BC strengths in the autism field, as well as potential gaps and collaborative opportunities within BC and beyond. The report also includes a list of autism researchers, research networks, and centres of excellence in BC.

Connecting PAFC to the research community

The dialogues and activities gathered into these reports represent the first step towards improving collaboration and synergy in autism spectrum disorder research in BC as well as championing of patient and family needs.

Next steps include the development of a research initiative called “Inform Every Autism” that will provide advice on how the PAFC can interact with the research community. Inform Every Autism will also supply information on research results to create outcomes that best serve individuals and families affected by autism spectrum disorder.