The CONNECT Project: Involving patients, clinicians, and decision-makers in research

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

The CONNECT project (CONtiNuity of care and support for the autism spECTrum disorder) aims to break down barriers and understand the needs and challenges faced by adults living with autism spectrum disorder. Led by MSSU Research Associate Dr. Caroline Jose and Patricia George-Zwicker, Autistic advocate, the CONNECT project is the MSSU’s first patient co-led research project. Additionally, within the Maritime provinces, CONNECT is the first interprovincial, multidisciplinary team working to make evidence-informed improvements to health and support services for autistic adults.

CONNECT is built on a foundation of collaboration, and the complementary expertise of all members will be used to generate new evidence and translate this evidence into improvements that will strengthen services and improve health outcomes for autistic adults. Autism is a large spectrum of disorders with a variety of communication and social disabilities and many complicating associated pathologies. Despite there being over 15,000 autistic adults in the Maritimes, data is scare, and Dr. Jose hopes to find answers to some very important questions through the CONNECT project.

Dr. Jose notes that “the autistic community is calling for more support for adults and their caregivers. But what do we know about them? What services do they need? Do they work?  Are they happy? What about their parents and caregivers upon whom the burden of care and costs too often falls?” Each autistic adult has his/her own strengths and challenges and those strengths and challenges may change over the life course. Dr. Jose hopes the survey will be filled by the most diverse autistic population possible.

Patricia Georges-Zwicker, an autistic adult and co-lead of the CONNECT project comments on the importance of the CONNECT project survey noting that the more feedback received, the more we know and the more we can change things for Autistic adults. Georges-Zwicker continues, “this survey is our opportunity to express ourselves and be heard.”

The results of this survey will be publicly unveiled during the Autistic Adults Summit, held November 17-18, in Shediac, New Brunswick. Until then, both co-leaders of the CONNECT project, invite the autistic community (adults, parents, caregivers, professionals and service providers) to fill out the survey in large numbers by going to http://bit.ly/CONNECT-survey or calling 506-863-2266.

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