An Autism Researcher's Toolbox for Community Engagement

Background: The last decade has seen significant growth in scientific understanding and in global public awareness of autism. Ideally, the best available research is developed within the context of the characteristics and values of the beneficiaries of such research; moreover it is reflected in policies set to improve the lives of those beneficiaries.

A key goal in community engagement is to direct the mainstream autism research agenda to meet the immediate needs and priorities of diverse stakeholders, i.e. families affected by autism, health practitioners and researchers in autism, etc. While there exist models describing the process through which knowledge generated from research impacts attitudes, practices, and policies, there is still little empirical data in autism research regarding such engagement and more importantly, how to measure its impact.

Objectives: Our aim is to highlight engagement models as they apply to autism research and to illustrate their utility in identifying knowledge gaps and stakeholders’ priorities using two case studies.

Methods: Together, the INVOLVE model, CIHR’s Integrated Knowledge Translation framework, and the K* movement endorse the notion that knowledge is more likely to be useful, applicable, and impactful if the beneficiaries of research are engaged in the research process. They also advocate a continuum of responsibilities of researchers ranging from responsible communication of research to executing purposeful research driven by needs and priorities of stakeholders other than researchers themselves.

To illustrate the utility of these theoretical models, we report on two case studies of stakeholder engagement focused on identifying knowledge gaps and future research priorities in autism. Attendees in our first case study were Canadian community workers who support families affected by autism to understand the condition, seek appropriate professionals and services, and obtain moral and emotional support. The second case study included members of the International Society for Autism Research i.e. clinicians, researchers, and community advocates in autism. Attendees were divided into breakout groups of 10-12 participants and provided guiding questions. A facilitator was appointed for each group to ensure the discussion was focused and inclusive. All attendees reconvened for a second session wherein leaders of the breakout groups presented a summary of their discussion and received input from other groups.

Results: Both case studies highlighted the need to integrate families and community partners in dialogues surrounding research. Also prominent across both studies was for tailored knowledge to support caregivers in becoming active and empowered participants in care for those affected by autism. Participants identified that models of care that effectively consider both the context of application, along with the facilitators and barriers to implementing best practices, were lacking. The latter must include evaluation of existing and anecdotally successful models of care in diverse communities.

Conclusions: The case studies illustrate that information generated from research is indeed relevant and critical for knowledge users in the community. Moreover, simple and systematic methods can support the translation and uptake of knowledge in diverse communities, therefore enhancing engagement with research and bridging research findings with immediate community needs.