Quality-of-life assessment in autistic adults with lower support needs: gaps and emerging challenges

Le résumé fourni par la source

Quality of life (QoL) has become a key construct in the planning of support for people with disabilities. In the case of autism spectrum disorder, particularly among adults with lower support needs, there is a notable lack of valid, sensitive, and culturally adapted tools to assess their well-being. Although this group often presents a functional cognitive and linguistic profile, they experience significant-and frequently overlooked-challenges in areas such as emotional regulation, social interaction, access to services, and community participation, all of which substantially impact their QoL. This mini-review examines the current state of knowledge in this field, addressing (1) conceptual models of QoL relevant to disability; (2) the main clinical, personal, and contextual determinants of QoL in adults with autism; (3) the limitations of currently available QoL instruments; and (4) the urgent need for new methodological developments participatory and sensitive to the specificities of autistic experience. Conceptual, psychometric, and representativeness gaps are identified, particularly regarding the additional challenges faced by women, people with diverse gender identities, and other groups historically underrepresented in autism research. In this regard, the present work highlights the need to advance toward more inclusive assessment models, sensitive to the profiles of individuals with autism without intellectual disability-grounded in participatory approaches that acknowledge the intersection of autism, gender, and other dimensions of diversity. The aim is to foster a more accurate understanding of well-being in this population and to advance person-centered practices and interventions that are more appropriately tailored to their specific and unique needs.

Ce résumé expose les affirmations des auteurs. BNTIC ne l’interprète pas comme une validation indépendante des résultats.