A newly released report co-led by Brock University and the Centre for Addiction and Mental Health (CAMH) aims to create and strengthen supports and services for Indigenous Peoples with neurodevelopmental differences.

Published this week, Forming the Circle: Report on the 2023 Gathering on Indigeneity, Neurodevelopmental Disabilities & Mental Health, calls for culturally relevant services, enhanced partnerships between Indigenous and non-Indigenous organizations and a national network for knowledge-sharing and advocacy, among other recommendations.

The report follows a Canadian Institutes of Health Research-funded event held earlier this year intended to elevate the voices of those with lived experience at the intersections of Indigeneity, neurodevelopmental disability and mental health.

Hosted at CAMH, the event was facilitated by Associate Professor Kendra Thomson of Brock’s Department of Applied Disability Studies and the Azrieli Adult Neurodevelopmental Centre and Community Support Specialist Louis Busch of the Shkaabe Makwa Centre for First Nations, Inuit, and Métis Wellness at CAMH. The event was attended by Indigenous Peoples with lived experience, Elders and Knowledge Keepers and representatives from Indigenous organizations from across Canada.

The final report reflects the collective findings of Indigenous Peoples and non-Indigenous allies who participated in the gathering and in the iterative feedback process that informed the report’s development.

“We need to listen to what people want and need in order to affect meaningful change,” says Thomson. “We heard from people who are labelled with neurodevelopmental disabilities and are Indigenous who don’t often have a voice and aren’t asked about their take on things. We need to listen to community.”

Busch says many neurodiverse people say they experience “a sense of disconnection, a sense of struggling with their identities and belonging — and that’s obviously compounded by the disconnection that many Indigenous Peoples feel from their culture and the loss of culture brought by colonization.”

The closing circle at the May 2023 Gathering on Indigeneity, Neurodevelopmental Disabilities and Mental Health, which is the foundation for the newly released report from researchers at Brock University and Shkaabe Makwa at the Centre for Addiction and Mental Health.

“There is an urgent need to ensure that culturally relevant services and supports are available to Indigenous Peoples with neurodevelopmental differences, that Elders are involved in the various initiatives and programming and that all steps are community-led,” he says.

The report is designed to be accessible to a wide audience of people with lived experience, family members, clinicians and policy-makers, and features strengths, challenges and recommendations for both immediate and long-term action.

Leading with strengths is important, says Busch, as one of the key takeaways from the report is the perspective on neurodevelopmental differences in Indigenous communities.

“We heard repeatedly that children are a gift, and also come with gifts, and that people with neurodevelopmental disabilities come with unique gifts that are often under-appreciated,” he says. “Our discussion showed that prioritizing strength-based approaches and autonomy is important.”

The report’s short- and long-term recommendations address funding to support land-based learning and community-led programs, improved services through enhanced cultural safety and access and the development of formal calls to action to meet the needs of Indigenous Peoples with neurodevelopmental differences, among other priority areas.

But the establishment of a National Network on Indigeneity and Neurodevelopmental Disability tops the lists of recommendations.

“The gathering highlighted that there are many people doing similar work — trying to raise awareness and acceptance and to improve services and, ultimately, quality of life for Indigenous people with neurodevelopmental differences — but we aren’t well connected,” says Busch.

Thomson says acknowledging and understanding differences is the first step to building the network.

“Different cultures have different stories and teachings and ideas, and the report shows only a small sample, but we can draw attention to this important intersection of unheard voices and underserved populations,” she says. “We want to start a conversation among people who are working in silos across the country and start building infrastructure to connect people of like interest.”

As the network grows, Thomson believes the primary goal must be to continue creating opportunities for people with lived experience to share their own expertise.

Anyone interested in contacting the team is invited to connect via the project website.