Autism research being led by autistics, caregivers

Throughout the Maritimes, adults living with autism spectrum disorder (ASD) and their caregivers are faced with a problem: the system fails them. While efforts have been made in preschool autism intervention programs, autistic adults lack adequate, customized and specialized services to accomplish their dreams and live fulfilling lives.

A new initiative is underway to generate knowledge and solutions on how to improve care and services for autistic adults. The CONtiNuity of care and support for Adults with Autism spectrum disorder (CONNECT) project was built on a foundation of collaboration, and the complementary expertise of autistic adults, parents, health-care and service providers specialized in autism.

“Autistic adults bring their lived experience in autism to the project; experience that most researchers or service providers are lacking. I accepted the co-lead role because the autistic participation should be mandatory in shaping the narrative around research on autism,” said Patricia George-Zwicker, an autistic adult and co-lead of the CONNECT project.

Doctor Caroline Jose, a researcher at the Maritime SPOR Support Unit (MSSU) and Université de Moncton, offers her research expertise to ensure the scientific reliability of the results. Jose guided the development of the CONNECT assessment survey on the needs of autistic adults in the Maritime provinces.

This project represents several milestones for the MSSU and Atlantic Canada. CONNECT is MSSU’s first patient/public coled research project and the first interprovincial, multidisciplinary team working to make changes in the lives of autistic adults and their caregivers. George-Zwicker encourages all autistics, their caregivers and professionals to fill out the survey.

“The more feedback we receive, the more we know and the more we can change things for autistic adults. This survey is our opportunity to express ourselves and be heard in a way that can effect change.”

The survey is available at bit. ly/CONNECTsurvey or calling 506-863-2266. The results of the survey will be unveiled during the Autistic Adults Summit, organized by the CONNECT team, taking place on Nov. 17 and 18, in Shediac, N.B.

To learn more about the CONNECT project and the Autistic Adults Summit, go to connect.mssu.ca or email connect@ mssu.ca.