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Sunday, July 4, 2021

Passing and Outcome Measures

 In The Politics of Autism, I talk about outcomes.

As long as government funds so much research, politics will shape the questions that scientists ask and determine the kinds of research that receive funding. Politics will even influence which scientists the policymakers will believe and which findings will guide public policy. In the end, science cannot tell us what kinds of outcomes we should want. ABA “works” in the sense that it helps some autistic people become more like their typically developing peers. Most parents regard such an outcome as desirable, but not all people on the spectrum agree

  Ari Ne'eman has an article at the AMA Journal of Ethics titled "When Disability Is Defined by Behavior, Outcome Measures Should Not Promote “Passing.” The 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.

From the article:

Many autism outcome measures would benefit from reevaluation using a neurodiversity lens. A common measure of repetitive behavior helps illustrate relevant principles. Because autistic repetitive behaviors present differently than those in obsessive-compulsive disorder (OCD), researchers modified the Children’s Yale-Brown Obsessive Compulsive Scale (CYBOCS) for autism-spectrum disorder (ASD) by adapting the CYBOCS’s compulsions checklist.33 The CYBOCS-ASD was developed in order “to document the current severity of repetitive behavior” in autistic children.34 It has been used as a primary outcome measure in clinical trials.34, 35 But autistic repetitive behaviors are different from those in OCD not only in presentation but also in experience. Autistic people generally engage in repetitive behaviors for pleasure or emotional self-regulation, while OCD repetitive behaviors are a cause of distress.5, 36, 37 The ethics of seeking to suppress behaviors that are pleasurable or helpful obviously differ from the ethics of treating distressing behavior. To justify the former, one must show not only that behavior is aberrant but also that it is harmful. Among the behaviors targeted by the CYBOCS-ASD are hand flapping, drawing objects of special interest, lining up objects, and rereading or watching the same media over and over.5 These are certainly autistic traits, but they are not harmful ones. It is possible for certain repetitive behaviors to cause harm—for example, if they involve compulsions or violence—but the CYBOCS-ASD casts a less modest net. Similar issues exist with other common autism measures, which prioritize eye contact and eliminating unusual hand/finger/body mannerisms alongside more legitimate priorities.38, 39
33.Scahill L, McDougle CJ. Children’s Yale-Brown Obsessive Compulsive Scale: Modified for Autism Spectrum Disorder (ASD). Version 5.0. Updated March 30, 2018.
34Scahill L, Dimitropoulos A, McDougle CJ, et al. Children’s Yale-Brown Obsessive Compulsive Scale in autism spectrum disorder: component structure and correlates of symptom checklist. J Am Acad Child Adolesc Psychiatry. 2014;53(1):97-107.e1.
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35Reddihough DS, Marraffa C, Mouti A, et al. Effect of fluoxetine on obsessive-compulsive behaviors in children and adolescents with autism spectrum disorders: a randomized clinical trial. JAMA. 2019;322(16):1561-1569.
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36Jiujias M, Kelley E, Hall L. Restricted, repetitive behaviors in autism spectrum disorder and obsessive-compulsive disorder: a comparative review. Child Psychiatry Hum Dev. 2017;48(6):944-959.
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37 King BH. Fluoxetine and repetitive behaviors in children and adolescents with autism spectrum disorder. JAMA. 2019;322(16):1557-1558.
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38Chan W, Smith LE, Hong J, Greenberg JS, Mailick MR. Validating the Social Responsiveness Scale for adults with autism. Autism Res. 2017;10(10):1663-1671.
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39 Schmidt JD, Huete JM, Fodstad JC, Chin MD, Kurtz PF. An evaluation of the Aberrant Behavior Checklist for children under age 5. Res Dev Disabil. 2013;34(4):1190-1197.