Goal attainment scaling – community-based: A method to incorporate personalized outcomes into intervention research with youth and adults on the autism spectrum

Abstract

Given the wide heterogeneity in the autism population, one challenge for intervention studies is to identify outcome measures that have similar meaning across individuals. This is particularly pronounced in intervention studies of adults with autism spectrum disorder, where outcomes such as employment, independence, or community living are common targets. However, these outcomes can be more challenging to obtain for those who have greater support needs, for example, and therefore may be more or less salient depending on the sample under study. Goal attainment scaling can help address this issue as it allows individuals to identify personally meaningful goals and track progress toward these goals. While goal attainment scaling is gaining popularity in the autism field as an outcome measure, most intervention studies that use goal attainment scaling have been situated in clinical or school settings. Generating reliable and scalable goals outside of these settings can be challenging. In this article, we describe the promise of goal attainment scaling for tailoring individualized outcomes among youth and adults with autism spectrum disorder and discuss the challenges of current goal attainment scaling methods in community-based intervention research. We then describe a new goal attainment scaling approach that is rigorous, practical, and can be used across research settings to measure individualized outcomes.