Autisme et qualité de vie. Développement et mise en application d'une approche intégrée par trajectoires

 

Isabelle Courcy

CIUSSS du Nord-de-l'Île-de-Montréal

 

Domaine : développement et fonctionnement des personnes et des communautés, et vie sociale

Programme Chercheurs-boursiers - Junior 1

Concours 2019-2020

More than 1% of Canadians are diagnosed with an Autism Spectrum Disorder (ASD). Research paints a dark portrait of the health and quality of life of adults on the autism spectrum. They would be more likely to have a poor quality of life, a medical conditions, and psychiatric disorders (e.g. depression, gastrointestinal or sleep disorders, obesity, hypertension, diabetes). However, very few studies address their social situation and life course, as well as their judgment on their own well-being.

These knowledge gaps limit our understanding of the factors and social processes that influence the quality of life of adults on the autism spectrum. This research program aims to develop and apply an innovative approach that integrates individuals' trajectories (socioeconomic, health, services, and care) while taking into account personal support network and the way people perceive their life.

Specifically, this program will:

  1. Document the quality of life and trajectories of adults diagnosed with ASD.
  2. Analyze how they perceive their trajectories and various aspects of their lives (life projects, interpersonal relationships, social support, sense of inclusion, social participation, etc.).
  3. Analyze, in light of these trajectories, the transformations in their personal support networks and identify the impacts on their quality of life.

Participatory and adapted methods are used to reach a diversity of people with different characteristics and life situations. In the continuum of autism research, this work is essential to better support and develop support, intervention and integrated care practices centered on the person and their quality of life.