Une étude qualitative par entretiens sur la qualité de vie et les expériences du vieillissement chez des adultes autistes

Auteurs

Résumé

La qualité de vie tout au long de la vie a été établie comme une priorité majeure de recherche par la communauté de l’autisme. Pourtant, relativement peu de choses sont encore connues sur la qualité de vie et les expériences du vieillissement des adultes autistes plus âgés. La plupart des études réalisées à ce jour ont utilisé des mesures génériques de la qualité de vie qui peuvent ne pas rendre compte avec précision des expériences des personnes autistes. L’objectif de cette étude qualitative était de comprendre comment les adultes autistes vivent et définissent la qualité de vie à mesure qu’ils vieillissent. Nous avons mené des entretiens semi-structurés avec 16 adultes autistes âgés de 40 ans et plus, originaires du Royaume-Uni et du Luxembourg. À l’aide d’une analyse thématique réflexive, nous avons identifié cinq thèmes qui contribuent à la qualité de vie : (1) Le diagnostic est déterminant, (2) La connexion avec les autres, (3) L’autonomie concernant l’espace et le temps, (4) « Les formalités de la vie », (5) La vulnérabilité. Cette étude identifie des aspects de la qualité de vie spécifiques à l’autisme et met en évidence les manières dont le vieillissement et l’autisme s’entrecroisent et ont un impact sur la qualité de vie.

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