When disability is defined by behavior, outcome measures should not promote 'passing'

Added on 18/10/2024

Type de contenu

Journal article of the type Perspective ( ; english)

Ari Ne’eman *
When disability is defined by behavior, outcome measures should not promote 'passing' published in the journal "AMA journal of ethics" n°23, vol.7, 7 pages , doi: 10.1001/amajethics.2021.569

*The author has publicly identified as autistic. [Learn more about this mention]

=> Unrestricted access and free

Summary/Presentation

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.

For your information:

(1) References in blue are resources listed on our site.

(2) Authors listed in this bibliography whose names are in color have published other resources referenced on the site. Clicking on the name allows you to see the list of resources they have published and shared on the site.

(3) Authors whose names are followed by an asterisk have publicly disclosed being autistic.

  • E. Anagnostou, N. Jones, M. Huerta, A. Halladay, P. Wang, L. Scahill, J. Horrigan, C. Kasari, C. Lord, D. Choi, K. Sullivan, G. Dawson (2015). "Measuring social communication behaviors as a treatment endpoint in individuals with autism spectrum disorder". Autism 19. doi:10.1177/1362361314542955

  • J. Beck, R. Lundwall, T. Gabrielsen, J. Cox, M. South (2020). "Looking good but feeling bad: 'Camouflaging' behaviors and mental health in women with autistic traits". Autism 24. doi:10.1177/1362361320912147

  • W. Chan, L. Smith, J. Hong, J. Greenberg, M. Mailick (2017). "Validating the social responsiveness scale for adults with autism". Autism Research 10. doi:10.1002/aur.1813

  • D. Fein, M. Barton, I. Eigsti, E. Kelley, L. Naigles, R. Schultz, M. Stevens, M. Helt, A. Orinstein, M. Rosenthal, E. Troyb, K. Tyson (2013). "Optimal outcome in individuals with a history of autism". BDJ 214. doi:10.1038/sj.bdj.2013.299

  • M. Gernsbacher (2006). "Toward a Behavior of Reciprocity.". The journal of developmental processes

  • E. Goffman (1964). "Stigma; Notes On The Management Of Spoiled Identity". doi:10.2307/2575995

  • R. Grzadzinski, T. Carr, C. Colombi, K. McGuire, S. Dufek, A. Pickles, C. Lord (2016). "Measuring Changes in Social Communication Behaviors: Preliminary Development of the Brief Observation of Social Communication Change (BOSCC)". Journal of Autism and Developmental Disorders 46. doi:10.1007/s10803-016-2782-9

  • P. Jaarsma, S. Welin (2012). "Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement". Health Care Analysis 20. doi:10.1007/s10728-011-0169-9

  • M. Jiujias, E. Kelley, L. Hall (2017). "Restricted, Repetitive Behaviors in Autism Spectrum Disorder and Obsessive–Compulsive Disorder: A Comparative Review". Child Psychiatry & Human Development 48. doi:10.1007/s10578-017-0717-0

  • B. King (2019). "Fluoxetine and Repetitive Behaviors in Children and Adolescents With Autism Spectrum Disorder.". JAMA doi:10.1001/jama.2019.11738

  • J. Leaf, R. Leaf, J. Mceachin, M. Taubman, S. Ala’i-Rosales, R. Ross, T. Smith, M. Weiss (2015). "Applied Behavior Analysis is a Science and, Therefore, Progressive". Journal of Autism and Developmental Disorders 46. doi:10.1007/s10803-015-2591-6

  • E. Loth, L. Garrido, J. Ahmad, E. Watson, A. Duff, B. Duchaine (2018). "Facial expression recognition as a candidate marker for autism spectrum disorder: how frequent and severe are deficits?". Molecular Autism 9. doi:10.1186/s13229-018-0187-7

  • A. Ne’eman* (2010). "The Future (and the Past) of Autism Advocacy, Or Why the ASA's Magazine, The Advocate , Wouldn't Publish This Piece". Disability Studies Quarterly 30. doi:10.18061/dsq.v30i1.1059

  • C. Nicolaidis, D. Raymaker*, K. McDonald, S. Dern, E. Ashkenazy*, C. Boisclair, S. Robertson, A. Baggs (2011). "Collaboration Strategies in Nontraditional Community-Based Participatory Research Partnerships: Lessons From an Academic–Community Partnership With Autistic Self-Advocates". Progress in Community Health Partnerships: Research, Education, and Action 5. doi:10.1353/cpr.2011.0022

  • A. Opar (2019). "In search of truce in the autism wars". Spectrum doi:10.53053/vrkl4748

  • L. Scahill, M. Riddle, M. McSwiggin-Hardin, S. Ort, R. King, W. Goodman, D. Cicchetti, J. Leckman (2017). "Children's Yale-Brown Obsessive-Compulsive Scale". doi:10.1037/t42601-000

  • L. Scahill, A. Dimitropoulos, C. McDougle, M. Aman, I. Feurer, J. McCracken, E. Tierney, J. Pu, S. White, L. Lecavalier, V. Hallett, K. Bearss, B. King, L. Arnold*, B. Vitiello (2014). "Children's Yale-Brown obsessive compulsive scale in autism spectrum disorder: component structure and correlates of symptom checklist.". Journal of the American Academy of Child and Adolescent Psychiatry doi:10.1016/j.jaac.2013.09.018

  • J. Schmidt, J. Huete, J. Fodstad, M. Chin, P. Kurtz (2013). "An evaluation of the Aberrant Behavior Checklist for children under age 5.". Research in developmental disabilities doi:10.1016/j.ridd.2013.01.002

This resource is cited in 5 resources referenced on the site:


 
Summarize/Comment on/Translate this reference?