Improving Demographic Data in Autism Research

Strategic Insights -

Current study results have been published on Developmental Diseases and Conditions - Autism, focusing on evaluating the feasibility and acceptability of more detailed demographic choices for families in the Autism Care Network (ACNet). Researchers from Children's Hospital of Philadelphia updated their survey using an iterative approach, incorporating qualitative and quantitative feedback from families across the US and Canada. The revised survey increased response options for race, ethnicity, sex, gender, and language, demonstrating high feasibility and acceptability rates among respondents.

Key Takeaways:

  • The updated demographic survey increased the number of response options for race, ethnicity, sex, gender, and language, resulting in 85 families within the ACNet and 242 families outside the ACNet providing feasibility and acceptability data.
  • 41% of respondents were from non-White or multiple race groups, indicating a more diverse representation.
  • 99% of respondents rated the updated form as same or better than the original, while 91% rated the updated form as acceptable, and 97% rated the survey as feasible.
  • Despite concerns about the burden on respondents, researchers found high rates of feasibility and acceptability of more granular response options in demographic surveys.
  • The revised survey can be adapted by researchers to make more granular demographic forms focused on 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.

Statistics:

  • 85 families within the ACNet and 242 families outside the ACNet provided feasibility and acceptability data.
  • 41% of respondents were from non-White or multiple race groups.
  • 99% of respondents rated the updated form as same or better than the original.
  • 91% of respondents rated the updated form as acceptable.
  • 97% of respondents rated the survey as feasible.

Sources:

  • Evaluating More Granular Options for Socio-demographic Questions In Autism Research (Autism Research, 2025)
  • NewsRx. Recent Research from Children's Hospital Philadelphia Highlight Findings in Autism (Evaluating More Granular Options for Socio-demographic Questions In Autism Research). Mental Health Weekly Digest. May 19, 2025; p 408.