Alone but Not Lonely: Examining Social Inclusion, Community Participation, and Solitary Activities In Autistic Adults

Background and Purpose

Social inclusion and community participation are central to quality of life for adults with intellectual and developmental disabilities (IDD), yet evidence is less clear for adults with autism spectrum disorder (ASD) who have a co-occurring IDD. Policy frameworks such as Home- and Community-Based Services (HCBS) emphasize participation in community life as critical services to improve health outcomes. However, these approaches assume increased participation reduces loneliness and enhances inclusion, which may not reflect autistic lived experiences. Autistic adults report different patterns of social connection, including meaningful relationships in affinity-based or autistic-led contexts, as well as varied relationships between time spent alone and loneliness. Using the 2023–2024 National Core Indicators–In Person Survey (NCI-IPS), this study examines patterns of social participation, companionship, and loneliness among autistic adults with co-occurring IDD compared to adults without ASD.

Methods

This study used secondary quantitative analysis of the 2023–2024 NCI-IPS, a dataset of adults receiving publicly funded IDD services across 30 U.S. states and Washington, DC. The sample includes adults aged 18 and older with ASD and co-occurring IDD, compared to adults with IDD without ASD; approximately 27% of respondents reported an ASD diagnosis within a sample of 17,585 individuals. Data were collected through interviews with individuals and proxies, along with administrative records. Analyses examine associations among community participation, religious service attendance, friendship, and loneliness, controlling for demographic and functional characteristics. Descriptive statistics and multivariable regression models were used, with state-level weighting and robust standard errors applied.

Results

Approximately 30% of adults with co-occurring IDD and ASD participated in community groups and 33% attended religious services, indicating low engagement. Participation varied by race/ethnicity, level of disability, communication ability, and living arrangement, while gender and most age differences were not significant. Individuals living in family homes had the highest participation, whereas those in group and more restrictive settings had lower engagement. Multivariable analyses identified living arrangement as the strongest predictor, with congregate settings associated with reduced participation. Patterns emerged by race/ethnicity, with Black participants less likely to engage in community groups but more likely to attend religious services. Individuals with more severe disability and those who did not use speech also had lower participation. A mismatch between current and desired participation was evident, as many individuals expressed a desire for greater involvement. Participation was not consistently associated with friendship outcomes after adjustment.

Conclusions and Implications

Findings challenge the assumption increasing participation alone improves social inclusion and reduces loneliness among adults with ASD and co-occurring IDD. Participation did not consistently predict meaningful social relationships when accounting for structural and individual factors. Living arrangement emerged as a key driver of participation and social outcomes, highlighting the role of service environments in shaping inclusion. Disparities by race/ethnicity and communication emphasize the need for equitable and accessible approaches. The gap between current and desired participation suggests many individuals remain underserved. Policy and practice should move beyond participation as a proxy for inclusion and prioritize the quality, accessibility, and relevance of social opportunities while addressing structural barriers.