In 2017, more than 15,000 Autistic adults aged 18 years of age and older lived in the Maritimes. The transition from adolescence to adulthood has far-reaching consequences for the Autistic community. For those entering adulthood, medical, psychological, social, and community needs are numerous and varied. This growing population frequently reports difficulties in connecting with care and support during this transitional period, which can undermine the progress made during their childhood years.
About the project
The CONNECT project (CONtiNuity of carE and support for autistiC adulTs) aims to break down barriers and understand the everyday needs and challenges faced by Autistic adults.
From the beginning, CONNECT recognized the need to engage Autistic adults in research and is the first Maritime-wide collaborative research initiative co-led by an Autistic adult. CONNECT aims to:
- Assess the needs of Autistic adults via a survey; and,
- Share what we learned and best practices with health and social service providers, policy-makers and the Autistic community.
Through this unique project, decision-makers will have access to a portfolio of evidence-based tools, created in collaboration with Autistic adults, their families and other knowledge users to improve the continuity of care and support for the Autistic community.
The Needs Assessment Survey
Beginning in 2017, we surveyed 164 Autistic adults in the Maritimes and their caregivers, as well as 96 professionals who work with Autistic adults in our region. The goal of the survey was to better understand the everyday needs and challenges of Autistic adults. The needs assessment survey, which was developed, designed and promoted with the help of Autistic adults, collected socio-demographic data, alongside information about physical and mental health, level of autonomy, quality of life, use of social and leisure services, the availability and use of financial support, as well as barriers limiting or denying access to existing supports and services.
Sharing what we have learned
The CONNECT research video: sharing the experience of Autistic adults
CONNECT team members worked collaboratively to develop a bilingual video highlighting research results and the significant contributions that Autistic youth, Autistic adults, and their parents have made to CONNECT. They are the stars of the video—playing a vital role in developing the concept for the video and sharing their experience. This video was made possible by a knowledge-translation grant from the Consortium national de formation en santé (CNFS) through funding from Health Canada, and was produced in collaboration with Spectrum Productions, a Montreal-based production company that creates opportunities for Autistic people who would like to work in media and the arts. A longer “behind-the-scenes” video is currently in production, which will tell the story of how the short video was made.
Learn more about the video:
- New video share the experiences of Autistic adults - August 20, 2019
- CONNECT team gets creative to share findings in a video - February 12, 2019
Autistic Adults Summit
November 17-18, 2017 (Shediac, New Brunswick)
More than 100 participants gathered to share their experiences and discuss ways to support Autistic adults in our region—an exceptional gathering for the Autistic community in the Maritimes. The Summit included presentations from national and international experts in the field of Autism, and a panel of Autistic adults shared their personal experiences accessing care and support systems in their province and community. The Summit also included a temporary art gallery displaying various artistic creations by Autistic adults.
November 17, 2017 (Shediac, New Brunswick)
This workshop was an opportunity for knowledge-users to provide feedback on the preliminary results of the CONNECT survey. It allowed the Autistic community of the three Maritime Provinces and the region’s stakeholders to make connections and come together to help define a way forward in New Brunswick, Nova Scotia and Prince Edward Island. The ideas and comments collected during the workshop helped refine the interpretation and analysis of the survey data and served to identify priority areas in Autistic adult research.
Jose C, George-Zwicker P, Bouma A, Tardif L, Pugsley D, Bélanger M, Robichaud M, Gaudet J. The associations between clinical, social, financial factors and unmet needs of Autistic adults: results from an observational study. Autism in Adulthood. 2021; 3(3): 266-274.
Jose C, George-Zwicker P, Tardif L, Bouma A, Pugsley D, Bélanger M, Gaudet J, Robichaud M. “We are the stakeholders with the most at stake”: scientific and autism community co-researchers reflect on their collaborative experience in the CONNECT project. Res Involv Engagem. 2020; 6(58).
- Edelson SM, Nicholas DB, Stoddart KP, Bauman MB, Mawlam L, Lawson WB, et al. Strategies for Research, Practice, and Policy for Autism in Later Life: A Report from a Think Tank on Aging and Autism. Journal of Autism and Developmental Disorders. 2021; 51:382–390.
- La réalité incomprise des adultes autistes - ICI Nouveau-Brunswick, Radio-Canada, February 2019
- Le projet CONNECT : un projet vidéo pour des adultes autistes - L'heure de pointe - Acadie, Radio-Canada, February 2019
- Être autiste lorsqu'on est adulte - Le Téléjournal Acadie, Radio-Canada, February 2019
- Mieux intervenir auprès des personnes autistes: la GRC recherche une formation – Radio-Canada, January 2017
- 'It's really worrying': Summit looks at struggles faced by adults with autism - CBC New Brunswick, November 2017
- L'autisme chez les adultes : « Il y a beaucoup de préjugés » - Radio-Canada, November 2017
- Vivre avec l'autisme à l'âge adulte - Radio-Canada, November 2017
- Bulletin de Nouvelles - Radio-Canada, November 2017
- L’équipe CONNECT à l’Expo 2017 sur l’autisme à Dieppe - Université de Moncton, October 2017
- Autism research led by autistics and their caregivers in the Maritimes - MSSU, Press Release, September 2017
- Le projet CONNECT est lancé - Université de Moncton, May 2017
- Autisme : espoir grâce à la recherche - L’heure de pointe – Acadie, Radio-Canada, May 2017
- Caroline Jose, PhD, Research Associate, Maritime SPOR SUPPORT Unit and Adjunct Professor, Université de Sherbrooke
- Patricia George-Zwicker, Editor of Autistics Aloud and Artist
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