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. Lay abstract Among people with autism—all who have the same diagnosis—there are major differences on a nearly limitless number of areas, such as language, daily living skills, intellectual ability, sensory difficulties, and physical and mental health diagnoses. Despite these many differences, the targeted outcomes of intervention studies are often measured the same way across autistic adults, including outcomes such as getting a job, achieving greater independence, or getting more services. People have different goals and abilities, and it is important to have a way for intervention studies to measure outcomes in a way that is more personal to each individual. To address this issue, we developed a new approach—called “Goal Attainment Scaling—Community-based” or GAS-CB—to measure individualized outcomes across different research settings. In this article, we describe the need for individualized outcomes in autism intervention research and current approaches to gathering these outcomes, with our discussion focused on a method called goal attainment scaling. We then describe reasons why current goal attainment scaling approaches might not be useful in intervention research that takes place in the community. Finally, we discuss a new goal attainment scaling approach (GAS-CB) that can be flexibly used for research participants with very different characteristics.

Social Participation and Navigation: Formative Evaluation of a Remote Intervention for Autistic Adolescents and Young Adults

“…Stakeholder feedback indicated the importance of customized support to address sensory-diversity, problemsolving, and routine-change-related challenges. These recommendations align with past intervention studies addressing autistic AYA's goals (e.g., Lee et al, 2021;Lopez-Herrejon et al, 2020). Like the original program, the modified SPAN-ASD will address these challenges, tailoring the intervention to each participant's needs, abilities, and supports.…”

Exploring Effects of Sensory Garments on Participation of Children on the Autism Spectrum: A Pretest-Posttest Repeated Measure Design

“…(2) Goal Attainment Scaling (GAS) . GAS measures progress toward individualized, meaningful goals and is a helpful outcome measure in autism studies with broad eligibility criteria [ 28 ]. GAS uses a scale of -2 to +2, with 0 assigned as baseline for this study, -2 reflects goal behaviors worsening, and +2 represents goal behaviors improving.…”

Effective digital support for autism: digital social stories

“…However, implementing such a strategy might pose logistical challenges, potentially reducing the amount of data gathered and also conflicting with the intended intervention aims, which are to facilitate the transfer of information while concurrently assisting individuals in achieving goals deemed significant for the target audiences. Nevertheless, the inclusion of personalized outcome measures, such as Goal Attainment Scaling ( 47 ) or Goal-Based Outcome frameworks ( 48 ), which involve selecting and scaling goals to evaluate the degree of goal achievement for individuals, can be seen as beneficial in supporting similar research designs.…”