"What's going to happen to him when we're gone?": Uncertainties of mothers of adult children with autism spectrum disorder and intellectual disability

Given that individuals with autism spectrum disorder (ASD) and intellectual disability (ID) often remain dependent on parental support as they transition into adulthood, this study sought to understand the lived realities of maternal caregivers to adult children with ASD-ID. Ten mothers of adult children with ASD-ID completed semi-structured interviews. Inductive thematic analysis resulted in three themes related to the uncertainties experienced by mothers of adult children with ASD-ID: (1) aging as a caregiver, (2) residence considerations, and (3) importance of permanency planning. Such uncertainties resulted from mothers simultaneously navigating their own aging process and the continued dependency of their child.