Caregiver burden among parents of adolescents with autism spectrum disorder transitioning to adulthood: A literature review

Introduction: Caregiver burden is a well-recognized phenomenon among parents of children with autism spectrum disorder. However, it has been little studied among parents of adolescents.

Methods: A literature review was conducted using the PRISMA method to examine studies published between 2018 and 2023. The aim was to explore the specificity of caregiver burden in the transition to adulthood. Four databases were searched; of 287 articles identified, twelve were retained. Results: The results are presented under four headings: methods of assessing burden, its characterization, and the individual and contextual factors that influence it. While common factors are found regardless of the child’s age, specific factors emerge in the critical period of adolescence, in particular concern for the future in relation to dependency, the young person’s future, and reduced access to medical and social services. Discussion: In light of the McGill model, a number of avenues for support are discussed. This contribution sheds light on a little-studied field and offers new research perspectives.