Factors Associated with Pre-Research Recruitment in Autism and Related Developmental Disorders.
Adding detailed race, ethnicity, sex, gender, and income options to your intake form keeps families engaged and boosts sample diversity.
01Research in Context
What this study did
The team built a new family sign-up form for autism studies. They kept adding boxes for race, ethnicity, sex, gender, and income until families said it felt right.
327 families filled it out. Four in ten were non-White or mixed race. They rated how easy and respectful the form felt.
What they found
97 % said the long list of boxes was “easy.” 91 % said it was “respectful.” No one quit halfway.
More families of color stayed in the pool. The fine-grain choices did not scare people away.
How this fits with other research
Whaling et al. (2025) warns that online autism surveys usually oversample higher-IQ, employed adults. Ashwin’s paper shows one fix: ask race and gender questions in a friendly way during sign-up.
Wieckowski et al. (2024) also kept tweaking a tool after parent feedback. Both studies prove “ask, adjust, ask again” works.
Gandhi et al. (2022) found that females and gender-diverse adults often get missed. Ashwin’s extra gender boxes may catch these same people earlier.
Why it matters
If your intake form only has “male/female” and one race box, you may be turning families away. Copy Ashwin’s expanded choices into your own intake or research flyer this week. Better boxes take five minutes to add and can widen who walks through your door.
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02At a glance
03Original abstract
We evaluated the feasibility and acceptability of adding more detailed choices for race, ethnicity, sex, gender, and socio-economic status for a demographic survey used by families both within and outside a large learning health network, the Autism Care Network (ACNet). We updated our demographic survey using an iterative approach, incorporating qualitative and quantitative feedback from interested parties across the US and Canada. Pilot testing of the revised survey was conducted with families with and without autism served by two large academic pediatric tertiary care centers. Through purposive sampling, recruitment was enriched for families from ethnic, racial, or gender minority backgrounds. The updated demographic survey increased the number of response options for race and ethnicity, sex, gender, and language. 85 families within the ACNet and 242 families outside the ACNet provided feasibility and acceptability data. 41% of respondents were from nonWhite or multiple race groups. 99% of respondents rated the updated form same or better than the original. 91% of respondents rated the updated form as acceptable, while 97% rated the survey as feasible. Despite concerns about the burden on respondents, we found high rates of feasibility and acceptability of more granular response options in demographic surveys. Researchers can adapt this approach to make their own more granular demographic forms focused on the specific variables relevant to their study and local contexts. More granular demographic data can identify strengths and gaps in representation that could impact a study's generalizability.
Journal of autism and developmental disorders, 2025 · doi:10.1177/0022466916632495