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Cited by 56Disability Rights and RepresentationEthics and bioethics in healthcareDown syndrome and intellectual disability research

When Disability Is Defined by Behavior, Outcome Measures Should Not Promote “Passing”

Open access
Ari Ne’eman·2021·AMA Journal of Ethics
DOI 10.1001/amajethics.2021.569PMC PMC8957386
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Abstract

When disability is defined by behavior, researchers and clinicians struggle to identify appropriate measures to assess clinical progress. Some choose the reduction or elimination of diagnostic traits, implicitly defining typical appearance as the goal of service provision. Such an approach often interferes with more meaningful, person-centered goals; causes harm to people with disabilities; and is unnecessary for dealing with traits that are intrinsically harmful or personally distressing, such as self-injury. Disability stakeholders should reevaluate outcome measures that seek to eliminate disability-related traits that are stigmatized but not harmful. Using autism and the emergent neurodiversity movement as a case study, this article explores ethical challenges in selecting outcome measures in behaviorally defined disability diagnoses.

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  • The neurodiversity paradigm is explicitly inclusive of all autistic and neurodivergent people, including those with the highest and most complex support needs.

    “the neurodiversity paradigm is explicitly inclusive of all autistic and neurodivergent people, including those with the highest and most complex support needs (Grinker, 2020; den Houting, 2019; Ne’eman, 2021).”

    From Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science (2022) · cites this paper as Ne’eman, 2021

    In “Responding to Neurodiversity’s Critics” (page unavailable), the paper rejects the view that neurodiversity applies only to less-impaired autistic people and says its objection to suppressing autistic traits holds regardless of impairment level. That supports inclusion of autistic people with high support needs, but the paper does not explicitly extend this claim to all neurodivergent people. (LLM, conf=0.85)

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Cites

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Research works printed but not linked: 24

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Cited by

Sorted by citations

Authors
Ne’eman, A.
Affiliations
Harvard University (US)
Corresponding author
Ari Ne’eman
ORCID
Ari Ne’eman
Venue
AMA Journal of Ethics
Publisher
American Medical Association (AMA)
Published
2021-07-01
Volume
23
Issue
7
Pages
E569-575
ISSN
  • 1937-7010 (ISSN-L)
  • 2376-6980
DOI
10.1001/amajethics.2021.569
PMC
PMC8957386
OpenAlex
W3182650589
Cited by
56
References
6
Citations by year
2026: 11 · 2025: 14 · 2024: 11 · 2023: 10 · 2022: 8 · 2021: 1 · 2013: 1
FWCI
8.65
Type
journal article
Language
en
Open access
Locations
  • The AMA Journal of Ethic (publishedVersion)
  • PubMed (publishedVersion)
  • PubMed Central (acceptedVersion)
Funders
  • National Institutes of Health
  • National Institute of Mental Health (T32MH019733)
Topics
  • Social Sciences › Safety Research › Disability Rights and Representation
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Down syndrome and intellectual disability research
Keywords
disability, outcome measures, passing, autism spectrum disorder, neurodiversity movement, self-harm, stigma, disability ethics
MeSH terms
Autistic Disorder, Persons with Disabilities, Humans, Outcome Assessment, Health Care

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