A Longitudinal Mixed-Methods Characterization of Family Support from Adolescence to Young Adulthood in Autism and Other Developmental Disabilities

Abstract

Although caregiving responsibilities and need for support persist and evolve across the life course in families with autistic youth or youth with other developmental disabilities (DDs), little is known about support during their child’s adulthood years. Therefore, the present study used a mixed-methods approach to examine change and stability in formal and informal family support across the transition to adulthood. Caregivers of 126 individuals with autism or DDs completed a modified version of the Family Support Scale, including open-ended questions, at five time points from adolescence (age 16) into young adulthood (age 22). Caregivers reported that informal support from family members was the most frequently used, helpful, and valued source of support with relative stability across time. In contrast, the reported helpfulness, use, and value of formal support (e.g., professionals, schools) for caregivers declined over time. Qualitative content analyses revealed characteristics of highly valued support included support type (e.g., instrumental or emotional) and features of the support source (e.g., their understanding). There was a shift to valuing emotional support more than instrumental support over time, especially for caregivers of less able adults. Partnership and dependability emerged as highly valued features of the support source. These findings fit within a social convoy perspective and likely reflect the “service cliff” experienced by autistic individuals or people with DDs and their families. As social networks shrink over time and formal services are less readily available in adulthood, remaining sources of support, particularly from family members, become increasingly important.

A longitudinal study of loneliness in autism and other neurodevelopmental disabilities: Coping with loneliness from childhood through adulthood

“…Notably, other than the questionnaire measure of loneliness at age 17, our findings revealed highly similar levels of loneliness for autistic and non-autistic NDD participants in our sample. These similarities across groups parallel other findings showing similar trajectories and outcomes for individuals with NDD and autistic individuals ( Lord et al, 2020 ; McCauley et al, 2020 ) and their family members ( Schiltz et al, 2023 ; Singer et al, 2023 ). Research should continue to identify unique and disparate experiences, challenges, and strengths of autistic people and people with non-spectrum developmental delays.…”