Consensus on high-priority outcomes to be used in the evaluation of services for autistic adults: Results from a "CBPR-Nested Delphi Process".
Christina Nicolaidis, Mirah Scharer, Dora M Raymaker and 10 others
PMID 40468818WHAT IT FOUND
Autistic adults, service providers, and researchers agreed on 15 self-reported outcomes for evaluating adult autism services.
They also found most existing questionnaires were too hard, too vague, or unable to capture access to communication.
Key findings
01The panel reached consensus on 15 outcomes for evaluating services for autistic adults.
02For most outcomes, existing instruments would need major adaptations; for some, no suitable instrument was found.
03Access to communication was named as a vital outcome, but no existing instrument adequately captured it.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
This is expert consensus on what to measure, not evidence that any service improves these outcomes. The panel could not directly include autistic people with extremely limited communication. The work focused on the United States and English-language instruments. The final list was limited by survey burden and by the need to choose outcomes likely to change with services. The authors did not report the final instrument selection or psychometric testing in this paper. One external expert could not be reached for the final consensus. No group of experts can represent everyone. The qualitative analysis was limited because the team had to review comments rapidly between rounds.
Declared interests
The AASPIRE Outcomes Project was funded by a 5-year National Institutes of Health grant. Team members received salary support or stipends, and outside experts were offered $500 stipends. The supplied text does not include a competing-interests declaration.
The easy way to misread this
Do not read the consensus outcome list as evidence that services work. This paper reports expert agreement on what to measure, not a tested intervention.