Reporting community involvement in autism research: Findings from the journal Autism.
Diana Weiting Tan, Laura Crane, Tori Haar and 3 others
PMID 39239858WHAT IT FOUND
After a mandatory statement, one autism journal's articles reported community involvement in 91 of 167 (54%) after versus 12 of 116 (10%) before.
Many statements were vague, so reported involvement does not prove meaningful power sharing.
Key findings
01Community involvement reporting increased after the mandatory statement: 12 of 116 eligible articles before and 91 of 167 after reported involvement.
02Many post-implementation statements were too unclear to classify participation level: 15 articles (17%) had insufficient information.
03Clinicians and healthcare providers were counted as community members in 23 post-implementation articles (25%).
STILL TO COME
How it was doneWhat they found
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What it does not show
Findings come from one journal, so they may not show what happened in autism research published elsewhere. The study cannot tell whether the mandatory statement itself caused the increase, because community involvement may have been rising anyway. Many community involvement statements were vague, so the coding may have counted involvement that was not clearly described. Inferential statistics were not used because many cells had small expected frequencies. Autistic young people were rarely reported as involved.
Declared interests
An author was an editor of Autism from 2012 to 2022 and was instrumental in the journal adopting the community involvement statement; another author was the Social Media Editor at Autism from 2010 to 2020 and was involved in discussions around adoption. The funders were a Macquarie University Research Fellowship and an Australian Research Council Future Fellowship, and they were not involved in design, analysis, interpretation or dissemination.
The easy way to misread this
Do not read the higher reporting rate as evidence that autistic people or families had real decision-making power. The study found many statements lacked enough detail, and involvement was often consultative or design-stage.