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Developing Shared Measurement Across Community Organizations: Data Across Indigenous Communities

  1. Autism Data Collaborative

Background

Meaningfully engaging with Autistic people is crucial for creating inclusive and supportive environments that respect their unique strengths, challenges, and perspectives. By understanding and embracing their diverse needs, we can foster a sense of belonging, promote their well-being, and offer opportunities to fully participate in various aspects of research. To achieve this, it is essential to adopt strategies that facilitate effective communication, modify activities to accommodate their preferences, and provide the necessary support and accommodations. In the following questions, we explore different aspects of meaningful engagement with autistic individuals, aiming to promote understanding, empathy, and inclusivity.

Families in First Nation communities are often dealing with fundamental challenges such as poverty, systemic discrimination, mistrust of the health system just to name a few. Our goal is to do qualitative research and allow families in each community to share their own stories. We hope to find similarities and differences in each community.

Headshot of Grant Bruno

Grant Bruno
Data-to-Policy Fellow

Community Engagement

In April 2023, Autism Alliance of Canada hosted the Autism Data Collaborative Engagement Event, where members were invited to provide feedback on priority items that will inform the future of this project. The main question discussed during the engagement event was: “How to meaningfully engage autistic people and their families in research without overwhelming them?”

From the session, as well as a previous understanding of the literature, we know that there is an urgent and critical need for more engagement with non-Indigenous organizations with the question of ‘how to better support Indigenous peoples’ in the sector of Autism. Grant recently finished a scoping review that found the same results. There is quite a bit of interest in learning how to better support Indigenous people and the lack of capacity in Indigenous communities creates a barrier to meaningfully engage. One way to address this barrier is to prioritize building and maintaining meaningful relationships with Indigenous people across Canada. The fellowship has given Grant the opportunity to build a relationship in the Six Nations and he will continue to look for more opportunities to do so.

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