Longitudinal Association Between Social Support and Quality of Life Among Middle-Aged and Older Autistic Adults

Abstract

Social support is positively associated with quality of life (QoL) in autistic people, yet almost all evidence is cross-sectional and focused on younger adults. We examined 2-year longitudinal survey data from 209 autistic adults aged ⩾40 years living in the United States, all recruited via the Research Match service of Simons Powering Autism Research for Knowledge. Participants self-reported their general QoL, autism-specific QoL, and social support (subjective support, instrumental support, and social interaction). Cross-lagged panel models tested bidirectional associations. Mean scores increased from Time 1 to Time 2 for the general QoL and autism-specific QoL, while social support was mostly stable. Higher baseline general QoL predicted greater subjective support later, whereas baseline subjective support did not predict later general QoL. A reciprocal relationship emerged between autism-specific QoL and subjective support. Unexpectedly, baseline instrumental support predicted lower subsequent general QoL. Among autistic adults in mid-to-later life, QoL appears to drive subsequent social support more strongly than support drives QoL, with the clearest reciprocity observed for autism-specific QoL and subjective support. Future multiwave studies with more diverse samples are needed to chart long-term trajectories and determine how tailored support can optimize aging outcomes in individuals with autism.

Lay Abstract

We know little about how autistic people’s perceived social support and quality of life (QoL) influence each other as they age. We surveyed 209 40+-year-old autistic adults living in the United States at two timepoints 2 years apart. They answered questions about their general QoL, QoL specific to their autistic experiences, and three types of social support (subjective support, instrumental support, and social interaction). The first survey was in late 2019/early 2020, and the second was 2 years later – late 2021/early 2022. We found that, on average, middle-aged and older autistic adults reported better QoL after 2 years, while the amount of practical help and the number of social interactions did not change. People who started out with better QoL reported more subjective support later. Reporting better autism-specific QoL at the beginning led to more emotional and practical support later and vice versa – feeling well-supported emotionally initially led to better autism-specific QoL later. Surprisingly, getting more initial practical support was linked to lower overall QoL 2 years later. Our results suggest that helping autistic adults feel comfortable with their identity, manage sensory needs, and navigate services may not only improve their QoL but also strengthen the emotional and practical support they receive from others. Practical help is still important, but it should match the person’s goals and preferences, so that it boosts, rather than harms, life satisfaction. Programs that check in regularly about changing needs, especially around significant life events like retirement or health changes, could make a real difference as autistic adults grow older.