A Scoping Review of Caregiver Worries of Transition-Aged Autistic Youth.

purposeThis scoping review aimed to summarize the worries of caregivers of transition-aged autistic youth and to assess whether these worries are captured in related measures.

methodsAs the first known review on the topic, a scoping review was most appropriate for summarizing the state of empirical literature. Six databases were used to identify 25 peer-reviewed articles published in English from 1993 to June 2025. Included articles were those that captured the worries of caregivers of autistic youth ages 16 to 30, who were living in the United States.

resultsAcross the literature, caregivers expressed worries at the individual (i.e., focused on the youth or the caregivers), interpersonal (i.e., related to interpersonal relations and community interactions), and organizational levels (i.e., higher educational systems, employment, living arrangements, and service systems). While some aspects of caregiver worries were captured in the reported measures, other worries were either not included (e.g., education-related worries) or were only partially captured (e.g., measures that included health-related worries focused on physical health and not mental health).

conclusionsMost articles qualitatively captured caregivers’ expressed worries (84%), suggesting a need for further exploration to assess the relationships between caregiver worries and other variables, including the long-term impact of worry on the caregiver’s health and overall well-being. Additionally, only a subset of worries was captured or partially captured in the identified measures, suggesting the potential need for developing alternative measures or for further adapting and validating currently available measures for this population.