Addressing Common Problems in Autism Research: Cohort Development and Sample Description for a Participatory, Real-World, Longitudinal Study of Outcomes in Autistic Adults.

Autism : the international journal of research and practice · 2026 · Cohort · OT · SLP
Christina Nicolaidis, Ian Moura, Mary Baker-Ericzén, Mirah Scharer, Joelle Maslak, Rachel Kripke-Ludwig, Willi Horner-Johnson, Julia Love, Dora M Raymaker, Andrea Joyce, Shannon des Roches Rosa, Grace A Herbert, Julie Lounds Taylor, Liu-Qin Yang, Katherine McDonald, Zack Siddeek, Steven K Kapp, Emanuel Frowner, Ivanova Smith, Anna Furra Wallington, K J Flores, Noah Kaufman, Clarissa Kripke, Joseph Vera, Vivian D Grillo, Finn Gardiner

Three ways of recruiting autistic adults (health systems, disability services, community) produced very different groups in age, support needs, health, and independence. Free, accessible outcome measures for autistic adults are now available for clinicians to use.

Key findings

1

The three subcohorts (healthcare, disability services, community) differed significantly in almost every participant characteristic, meaning findings from one recruitment setting may not apply to autistic adults reached through another.

2

The community-recruited group was older, more independent, and more likely to be women or LGBTQIA+, but reported worse overall health, higher rates of depression, anxiety, and PTSD, and were less likely to receive the support they needed.

3

A set of 22 accessible outcome measures (with direct-report and caregiver-report versions) is freely available for clinicians and researchers to use with autistic adults.

MethodologyResultsClinical Relevance

Single-blind randomized controlled trial. Sixty-four participants were randomized across two intervention arms and assessed at twelve weeks for the primary outcome…

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Summarised by AI from the abstract, not the full paper. Check it against the source before it changes what you do. Read it on PubMed