A Passing Problem: Evaluating Harm and Benefit in Autism Research

This publication is included in the Autistic Autism Scholarship Project. two authors of this publication are identified as autistic in the project.

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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
Publisher source (DOI) OpenAlex source

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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.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 08:04.

Cited references
66
With a DOI
47
Without a DOI, from raw bibliography text
19
19 / 66 (28.8%) cited references include at least one author identified as autistic.
References with data to complete
15 / 66 (22.7%)
References with detected author names
51 / 66 (77.3%)
Without detected author names
15
Without a structured title
15
Without a stable identifier
19
References with raw author names still to review
5
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
189
From DOI or external metadata
189
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
5
102 / 189 (54.0%) names are linked to an author already present in AutiHub. 87 / 189 (46.0%) names are not yet linked.
Names linked to a person identified as autistic
30 / 189 (15.9%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 30 / 102 (29.4%). Distinct people identified as autistic: 20 / 164 (12.2%).
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