Reimagining a Quality of Life Measure Informed by the Autistic Community

Research on the quality of life (QoL) of Autistic adults has historically relied on measures that were neither developed in collaboration with the Autistic community, nor tailored to their specific experiences and perspectives. This led to reported outcomes that mirrored societal assumptions about what constitutes QoL, such as full-time employment, rather than accurately reflecting the priorities of the Autistic community. To address such issues, this community-engaged proposal aims to refine and pilot a novel Autistic Quality of Life (AQoL) measure, co-developed with Autistic adults from the start. To assess and strengthen the measure’s validity, we will: (1) engage a review panel of 10 neurodivergent subject matter experts and/or Autistic community members, (2) conduct cognitive interviews with 5 Autistic community members, (3) refine the measure based upon panel and interview feedback, and (4) pilot the refined measure with approximately 500 Autistic adults. Through this multi-phase, mixed-methods approach to scale validation, we aim to produce an accessible, psychometrically sound instrument that reflects the lived experiences and values of Autistic people. This project aligns directly with OAR’s community-engaged research and community-based assessment objectives, as it is led by an Autistic Co-PI, grounded in the priorities of the Autistic community, and involves ongoing collaboration with the Autistic community throughout iterative refinement of the measure.