Evaluating More Granular Options for Socio-Demographic Questions in Autism Research.
Rosalind Usher, Kristn Currans, Kate Wallis and 2 others
PMID 40259713WHAT IT FOUND
Caregivers found more detailed race, ethnicity, sex, and gender options workable and acceptable. 97% agreed the updated form was workable, 90.2% rated it excellent or good, and the study did not find a difference in ratings between nonWhite and White families.
Key findings
01Almost all caregivers (97%) agreed or strongly agreed that the updated demographic form was feasible, and 90.2% rated it excellent or good.
02The study did not find statistically significant differences between Majority and Minority respondents on the feasibility and acceptability questions.
03Among ACNet caregivers who compared forms, 14.1% said the updated form was much better, 47.1% better, 37.6% about the same, and 1.2% much worse.
STILL TO COME
How it was doneWhat they found
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What it does not show
Most caregivers had high education and English proficiency, so the ratings may not reflect families with lower literacy or limited English. Most feasibility and acceptability respondents came from the Philadelphia region, so results may not apply to other regions. Families outside the research network volunteered specifically for this demographic-form study and were purposefully enriched for nonWhite families, which may have made their responses more positive. ACNet caregivers completed multiple other questionnaires, so response fatigue may have lowered their positive ratings. Some granular race and ethnicity groups had only 1-2 individuals and were aggregated, so very small groups are not well represented. The paper reports only form feasibility and acceptability ratings, not recruitment or clinical outcomes.
Declared interests
The authors declared no conflicts of interest. The work was supported by the Maternal and Child Health Bureau and Autism Speaks.
The easy way to misread this
Do not conclude that more granular demographic questions will improve recruitment or representation in autism research. The paper reports caregiver ratings of one updated form. It does not report whether more diverse families participated or whether enrollment changed.