Measuring high-priority outcomes in a real-world sample of autistic adults: cohort development, data collection, and sample description for the AASPIRE Outcomes Project

Adult autism services research is plagued by methodological challenges, including 1) lack of accessible self-reported outcome measures, 2) difficulty obtaining representative or heterogeneous samples, and 3) a frequent mismatch between experimental methodologies and real-world settings. The AASPIRE Outcomes Project uses a community-based participatory research (CBPR) approach to 1) create a set of self- and caregiver-reported outcome measures to evaluate health and social services for autistic adults, and 2) explore factors predicting changes in outcomes. We previously used a CBPR-nested Delphi process to identify high-priority outcomes and then adapted or created instruments to measure them. We are conducting a longitudinal survey to validate these measures in a pragmatic sample of autistic adults from two healthcare systems, two disability service systems, and the larger autistic community in the United States. We collected baseline data from 870 participants. Follow-up rates were >80% for the 2nd and 3rd timepoints. The sample includes strong heterogeneity. As expected, sample characteristics differed markedly between the 3 subcohorts. All 22 outcome measures demonstrated excellent internal consistency and test-retest reliability. Lessons from our experience may help other researchers devise strategies to effectively recruit and collect rich data from heterogeneous samples of autistic adults across various settings.