A Passing Problem: Evaluating Harm and Benefit in Autism Research

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Ne'eman, A., Richman, K. A., McCarthy, A. M., & Wilkenfeld, D. A. (2023). A Passing Problem: Evaluating Harm and Benefit in Autism Research. Ethics & Human Research, 45(6), 2-18. https://doi.org/10.1002/eahr.500188

Publication date: 1 Nov 2023 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
4
Publication authors identified as autistic
2 / 4 (50.0%)
  1. Ari Ne'eman *
  2. Kenneth A. Richman
  3. Allison M. McCarthy
  4. Daniel A. Wilkenfeld *

Abstract

Autism research frequently seeks to evaluate interventions or inform their development. Unfortunately, researchers often assume that autism intervention should reduce autistic traits, effectively setting as a goal of treatment that autistic people attempt to "pass" as nonautistic. A growing body of evidence highlights serious potential harms from passing demands. We discuss why it is important for institutional review boards (IRBs) to scrutinize autism research for clinical passing demands, and we document the existence of such demands in outcome measures commonly employed in autism research. We propose an ethical framework for IRBs and others to make use of in evaluating the ethical appropriateness of particular treatment goals in autism intervention or intervention-adjacent research, emphasizing that treatment goals should be in pursuit of a beneficial nonpassing purpose and be the least burdensome means of accomplishing such a purpose. We also highlight potential promising practices for IRBs, investigators, and other stakeholders seeking to address these issues in autism research.

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These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:31.

Cited references
66
Total cited references integrated for this publication.
Cited references with an identified autistic author
18 / 66 (27.3%)
Cited author occurrences identified as autistic
25 / 189 (13.2%)
Among occurrences linked to AutiHub author records: 25 / 90 (27.8%). Distinct cited authors identified as autistic: 15 / 163 (9.2%).
Cited author occurrences linked to AutiHub author records
90 / 189 (47.6%)
Distinct linked cited authors: 66 / 163 (40.5%)
Linked cited-author occurrences not identified as autistic
65 / 90 (72.2%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 65 / 189 (34.4%). Distinct linked cited authors not identified as autistic: 51 / 66 (77.3%).
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