Measurement matters: A commentary on the state of the science on patient reported outcome measures (PROMs) in autism research.
Autism needs patient surveys that are tested, valid, and inclusive—this paper tells us how to build them.
01Research in Context
What this study did
Cummings et al. (2024) wrote a position paper. They looked at patient-reported outcome measures for autistic people. These are surveys that ask people how they feel.
The authors found big gaps. Most tools skip key checks. They miss diverse voices. The paper lists what must happen next.
What they found
Autism research lacks solid surveys. Current tools are weak. Few show real validity. Even fewer include non-speaking or minority groups.
The team says we need new rules. Test surveys with large, varied groups. Share data openly. Only then can we trust the numbers.
How this fits with other research
Provenzani et al. (2020) counted 327 different outcome tools in 406 trials. Most were used only once. This chaos matches K et al.'s call for fewer, stronger measures.
Burrows et al. (2018) tested depression surveys in autistic adults. They found little proof the tools work. Their warning foreshadows K et al.'s plea for full psychometric checks.
Arnold et al. (2023) built a new autistic-burnout scale. It lacked accuracy and mixed up burnout with depression. Their struggle shows why K et al. demand better design from the start.
Lord et al. (2005) already asked for shared outcome sets. Nearly twenty years later, K et al. repeat the plea. The field has moved slowly.
Why it matters
You rely on surveys to show if your client feels better. Weak tools hide real progress. Strong, fair tools help you set goals and prove your work helps. Push publishers, funders, and your team to adopt surveys that include all voices and pass full validity tests.
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02At a glance
03Original abstract
High quality science relies upon psychometrically valid and reliable measurement, yet very few Patient Reported Outcome Measures (PROMs) have been developed or thoroughly validated for use with autistic individuals. The present commentary summarizes the current state of autism PROM science, based on discussion at the Special Interest Group (SIG) at the 2022 International Society for Autism Research (INSAR) Annual Meeting and collective expertise of the authors. First, we identify current issues in autism PROM research including content and construct operationalization, informant-structure, measure accessibility, and measure validation and generalization. We then enumerate barriers to conducting and disseminating this research, such as a lack of guidance, concerns regarding funding and time, lack of accessible training and professionals with psychometric skills, difficulties collecting large representative samples, and challenges with dissemination. Lastly, we offer future priorities and resources to improve PROMs in autism research including a need to continue to evaluate and develop PROMs for autistic people using robust methods, to prioritize diverse and representative samples, to expand the breadth of psychometric properties and techniques, and to consider developing field specific guidelines. We remain extremely optimistic about the future directions of this area of autism research. This work is well positioned to have an immense, positive impact on our scientific understanding of autism and the everyday lives of autistic people and their families.
Autism research : official journal of the International Society for Autism Research, 2024 · doi:10.1002/aur.3114