The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants.
Christina Nicolaidis, Dora Raymaker, Steven K Kapp and 7 others
PMID 30939892WHAT IT FOUND
Autistic partners described clear role expectations, text-based meetings, advance materials, sensory supports, and concrete questions as ways to include adults with communication, cognitive, or support needs.
These are practice lessons, not tested clinical interventions.
Key findings
01Partners reported frustration when a project was promoted as participatory but gave community members advisory roles without decision-making power.
02Accommodations such as multiple participation formats, advance materials, one-on-one support, sensory supports, and interpretation allowed partners with intellectual disability, limited spoken language, and high support needs to participate.
03Standard consent forms were highly inaccessible for autistic partners, so the team simplified language, removed sections, added images, and provided text-to-speech or ASL versions.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The guidelines come from the authors' own collaborations and are not tested interventions. The authors could not review all communications from the study period and relied on available artifacts and recollections. Not all former community partners were contacted, so missing perspectives may be present. The paper does not evaluate clinical outcomes or compare groups, so it cannot establish effectiveness.
Declared interests
The paper reports federally funded partnerships and lists government research support, but the supplied text does not include a separate conflicts of interest declaration.
The easy way to misread this
Do not treat these guidelines as tested clinical interventions. They are qualitative practice lessons from research partnerships, and the paper does not test patient outcomes or compare treatments.