How have Participation Outcomes of Autistic Young Adults been Measured? A Scoping Review.
Most participation measures for autistic young adults are junk—use only the psychometrically sound ones listed in Table 2.
01Research in Context
What this study did
The team read 113 papers that tracked how autistic young adults take part in life. They looked at every tool used to measure work, friends, hobbies, and community life.
They asked: Do these tools actually work? They checked if each one had proof it was reliable and valid.
What they found
Most tools were weak. Many had no data showing they truly capture participation. The review lists the few strong ones in Table 2.
Researchers kept using the same shaky surveys again and again.
How this fits with other research
Davidovitch et al. (2018) said the same thing about quality-of-life tools: we lack autism-specific ones. Dembo et al. (2023) now shows the same gap for participation tools.
Myers et al. (2015) found community participation drops after high school. That hard fact rests on the very tools this new paper calls flimsy.
Davidovitch et al. (2018) and Garagozzo et al. (2024) warn that generic QoL tools under-rate autistic adults. Dembo et al. (2023) adds that even participation tools often aren’t autism-specific, so the low scores may partly reflect poor fit, not poor lives.
Why it matters
Before you write a goal on community outings, check Table 2. Pick a tool that has real psychometric backing. Stop re-using the same weak survey just because it is free. Good data drives good goals.
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02At a glance
03Original abstract
Autistic young adults experience challenges participating in the workforce, post-secondary schooling, and living in the community. We examined how participation outcomes have been measured in autistic young adults. Articles (n = 113) were identified through database searches and citation tracking. Guided by current models in the literature, data were extracted for each measure of participation. Results include a description of the studies in the review, the extent to which participation across life situations has been addressed, and a critical analysis of the measures used to describe participation. While there is some breadth in the investigation of participation across diverse life situations, there is limited depth in what the measures capture and many measures used lack psychometric support.
Journal of autism and developmental disorders, 2023 · doi:10.1016/j.apmr.2009.06.009