The Connect Project and Its Lessons for Future Multistakeholder Research on Adult Autism

Background: Launched in 2017 and developed under Canada’s national Strategy for Patient-Oriented Research, the CONNECT project (CONtiNuity of carE and services for autistiC adulTs) was the first Autistic co-led research collaboration bringing together autistic adults, caregivers of people living with autism, researchers, service providers, and policy decision-makers from across the Maritimes Provinces.

Objectives: The goal of the project was to collect and disseminate much-needed hard data on the health, socioeconomic status and service needs of the autistic adult community living in New Brunswick, Nova Scotia and Prince Edward Island.

Methods: When nearing the closing stages of the project, the CONNECT team decided to take a step back and to reflect critically on the study’s life cycle, from its genesis to the production and dissemination of its intended deliverables. Researchers were not the only ones reflecting upon their experience with this pioneering patient-engagement initiative. Patient partners also pondered the highs and lows of the CONNECT project and the lessons learned from their participation, using a feedback questionnaire to comment on such aspects as recruitment methods, group dynamics, the nature and scope of their engagement as well as the impact that their engagement had on the project and on their own personal development.

Results: The CONNECT project proved to be a tremendous learning experience for all those involved. Yet it was not without its learning curve, nor without its difficulties and growing pains. At the same time, this presentation will also show that the CONNECT project had many unanticipated outcomes which suggest that the full potential and transformative value of such collaborative enterprises has yet to be completely understood. When the name “CONNECT” was initially chosen for the project, it was meant to signify a paradigm shift in autism research by initiating a dialogue between autistic adults, service providers and policy makers. Indeed, when individuals living with autism reach adulthood, they are often “disconnected” from the various supports and services that were available to them during childhood. Yet as time passed and as the team reached its various milestones, the CONNECT name gradually took on a new meaning, bringing into more clearer focus the various human and personal “connections” that were being forged among autistic adults themselves. These connections were described by one Autistic patient partner as a form of “Autistic Oxygen.” When reflecting on the significance of the data collected and especially on the value of their engagement in the CONNECT project as patient partners, another Autistic partner summed their experience this way: “We’re the stakeholders with the most at stake.”

Conclusions: The CONNECT project can be used as a prism through which one can see more clearly the myriad benefits and challenges of adopting a collaborative multi-stakeholder approach when studying adult autism, whether viewed from the perspective of the autistic community, the research community or the policy-maker and service-provider communities. In looking through the CONNECT experience lens, this presentation will offer practice-based recommendations for other teams that are considering using such an approach in their own research.