Literature DB >> 34351268

When Disability Is Defined by Behavior, Outcome Measures Should Not Promote "Passing".

Ari Ne'eman1.   

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.
© 2021 American Medical Association. All Rights Reserved.

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Year:  2021        PMID: 34351268      PMCID: PMC8957386          DOI: 10.1001/amajethics.2021.569

Source DB:  PubMed          Journal:  AMA J Ethics


  27 in total

1.  Fluoxetine and Repetitive Behaviors in Children and Adolescents With Autism Spectrum Disorder.

Authors:  Bryan H King
Journal:  JAMA       Date:  2019-10-22       Impact factor: 56.272

Review 2.  Restricted, Repetitive Behaviors in Autism Spectrum Disorder and Obsessive-Compulsive Disorder: A Comparative Review.

Authors:  Marina Jiujias; Elizabeth Kelley; Layla Hall
Journal:  Child Psychiatry Hum Dev       Date:  2017-12

3.  Collaboration strategies in nontraditional community-based participatory research partnerships: lessons from an academic−community partnership with autistic self-advocates.

Authors:  Christina Nicolaidis; Dora Raymaker; Katherine McDonald; Sebastian Dern; Elesia Ashkenazy; Cody Boisclair; Scott Robertson; Amanda Baggs
Journal:  Prog Community Health Partnersh       Date:  2011

4.  Why Does Joint Attention Look Atypical in Autism?

Authors:  Morton Ann Gernsbacher; Jennifer L Stevenson; Suraiya Khandakar; H Hill Goldsmith
Journal:  Child Dev Perspect       Date:  2008-04

5.  Toward a Behavior of Reciprocity.

Authors:  Morton Ann Gernsbacher
Journal:  J Dev Process       Date:  2006

6.  Deficit, difference, or both? Autism and neurodiversity.

Authors:  Steven K Kapp; Kristen Gillespie-Lynch; Lauren E Sherman; Ted Hutman
Journal:  Dev Psychol       Date:  2012-04-30

Review 7.  Measuring social communication behaviors as a treatment endpoint in individuals with autism spectrum disorder.

Authors:  Evdokia Anagnostou; Nancy Jones; Marisela Huerta; Alycia K Halladay; Paul Wang; Lawrence Scahill; Joseph P Horrigan; Connie Kasari; Cathy Lord; Dennis Choi; Katherine Sullivan; Geraldine Dawson
Journal:  Autism       Date:  2014-08-05

8.  Children's Yale-Brown obsessive compulsive scale in autism spectrum disorder: component structure and correlates of symptom checklist.

Authors:  Lawrence Scahill; Anastasia Dimitropoulos; Christopher J McDougle; Michael G Aman; Irene D Feurer; James T McCracken; Elaine Tierney; Jie Pu; Susan White; Luc Lecavalier; Victoria Hallett; Karen Bearss; Bryan King; L Eugene Arnold; Benedetto Vitiello
Journal:  J Am Acad Child Adolesc Psychiatry       Date:  2013-10-17       Impact factor: 8.829

9.  Facial expression recognition as a candidate marker for autism spectrum disorder: how frequent and severe are deficits?

Authors:  E Loth; L Garrido; J Ahmad; E Watson; A Duff; B Duchaine
Journal:  Mol Autism       Date:  2018-01-30       Impact factor: 7.509

10.  "Putting on My Best Normal": Social Camouflaging in Adults with Autism Spectrum Conditions.

Authors:  Laura Hull; K V Petrides; Carrie Allison; Paula Smith; Simon Baron-Cohen; Meng-Chuan Lai; William Mandy
Journal:  J Autism Dev Disord       Date:  2017-08
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  2 in total

Review 1.  Annual Research Review: Shifting from 'normal science' to neurodiversity in autism science.

Authors:  Elizabeth Pellicano; Jacquiline den Houting
Journal:  J Child Psychol Psychiatry       Date:  2021-11-03       Impact factor: 8.265

Review 2.  A capabilities approach to understanding and supporting autistic adulthood.

Authors:  Elizabeth Pellicano; Unsa Fatima; Gabrielle Hall; Melanie Heyworth; Wenn Lawson; Rozanna Lilley; Joanne Mahony; Marc Stears
Journal:  Nat Rev Psychol       Date:  2022-09-05
  2 in total

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