Considerations from the 2017 IMFAR Preconference on Measuring Meaningful Outcomes from School-Age to Adulthood.
Stop counting symptoms only—add lifespan, strength-based measures that autistic people and families actually care about.
01Research in Context
What this study did
A panel of researchers, parents, and adults with autism met before the 2017 IMFAR conference. They talked about what success should look like for autistic people after childhood. The group wrote down six big themes and practical tips for picking better outcome measures.
They did not run a new experiment. Instead they blended lived experience with past research to create a roadmap for future studies.
What they found
The panel agreed that counting autism symptoms is not enough. They want researchers to track quality of life, self-determination, and daily skills that matter to the person. Measures should be strength-based and work across the whole lifespan, not just for young kids.
They also urged teams to include autistic voices when choosing what to measure.
How this fits with other research
Hendrix et al. (2022) backs this up. Their review of 20 parent-mediated studies found most teams still measure challenging behavior and ignore emotion regulation. The IMFAR panel would call that too narrow.
Schmitt et al. (2021) shows one way forward. They tested a short cognitive-flexibility game, the PRL task, and it detected real change after an intervention. It is exactly the kind of novel, meaningful tool the panel asked for.
Howard et al. (2023) give another example. They built the SOAR scale to watch sensory behaviors during natural play with toddlers. It is ecologically valid and easy to use, matching the panel’s themes.
Bassett-Gunter et al. (2017) echo the same message from a parent angle. Their review argues parent stress and family quality of life should count as outcomes, not just child language scores. Together these papers form a chorus: widen the lens.
Why it matters
Next time you plan an assessment, add one stakeholder-chosen target such as daily living skills, self-advocacy, or parent well-being. Swap one symptom checklist for a strength-based scale like SOAR or the PRL task. You will collect data that reflect real-life progress and respect autistic priorities.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Pick one new quality-of-life or self-determination measure and pilot it in your next evaluation.
02At a glance
03Original abstract
The autism spectrum disorder (ASD) research community is increasingly considering the importance of measuring outcomes that are meaningful to individuals with ASD and their families. The 2017 IMFAR preconference aimed to gain the perspectives of how to define and measure "meaningful outcomes" from 280 participants, including people with ASD and their families, service providers, and researchers. Six themes were identified: (a) the definition of "outcome" varies by context and perspective; (b) the need to broaden the scope of what researchers measure; (c) the need for new assessment tools; (d) the need to expand data analytic methods; (e) where to focus (with emphasis on considering different developmental stages and aspects of diversity); and (f) a need for community partnerships to bridge research and daily practice. The challenge that the research community now faces is how to move the evidence base for clinical practice forward while keeping alive the divergence of views and considerations that are relevant for thinking about complex outcomes for the highly heterogeneous group of individuals with ASD. This commentary provides recommendations, with an emphasis on lifespan viewpoints that encompass individual strengths and preferences. Autism Research 2018, 11: 1446-1454. © 2018 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: The 2017 IMFAR preconference aimed to gain the perspectives of how to define and measure "meaningful outcomes" from a variety of stakeholders. This commentary outlines the six themes identified from keynote and panel presentations and audience-participated discussions. Recommendations are made to emphasize perspectives that look across the lifespan and encompass individual strengths and preferences.
Autism research : official journal of the International Society for Autism Research, 2018 · doi:10.1002/aur.2034