ArticleAMA journal of ethics2021
When Disability Is Defined by Behavior, Outcome Measures Should Not Promote "Passing".
Article in AMA journal of ethics, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT07393152 (Studio Pilota su Strumenti Collaborativi, Globali, Multidimensionali e di qualità Della Vita Per la Definizione Delle priorità, lo Sviluppo di Processi Decisionali Condivisi, la Valutazione Degli Esiti e il Miglioramento Della qualità Delle Cure Per le Persone Con Disturbi Dello Spettro Autistico), which is not on this map. Cited by 20 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Studio Pilota su Strumenti Collaborativi, Globali, Multidimensionali e di qualità Della Vita Per la Definizione Delle priorità, lo Sviluppo di Processi Decisionali Condivisi, la Valutazione Degli Esiti e il Miglioramento Della qualità Delle Cure Per le Persone Con Disturbi Dello Spettro Autistico (ASD) Nella Pratica Clinica Quotidiana.
Who cites it
20 citing papers in PubMed.
- Reasonable to Whom? Rethinking Informed Consent Disclosures in Light of the Research Related Concerns of the Autistic Community.The American journal of bioethics : AJOB · 2026Article
- Ableism in Applied Behavior Analysis: A Beginner's Guide to Understanding and Dismantling Ableism in Practice with Autistic People.Behavior analysis in practice · 2026Review
- Autistic Adolescents' and their Parents' Perspectives on a National Flourishing Item Set: A Construct Validation Study.Maternal and child health journal · 2026Article
- Neurodiversity-Affirming Applied Behavior Analysis.Behavior analysis in practice · 2026Article
- Redefining autism in adulthood interventionsFrontiers in child and adolescent psychiatry · 2026Article
- Piloting the College SUCCESS Curriculum on Campus: A Program to Enhance Executive Functioning and Social Cognitive Skills in Autistic College Students.Autism in adulthood · 2025Article
- Consensus on high-priority outcomes to be used in the evaluation of services for autistic adults: Results from a "CBPR-Nested Delphi Process".Autism : the international journal of research and practice · 2025Article
- Correlates of Impairment and Growth in Families of Young Autistic Children.Journal of autism and developmental disorders · 2025Article
- Subthreshold Autism and ADHD: A Brief Narrative Review for Frontline Clinicians.Pediatric reports · 2025Review
- Centering Autistic Perspectives: Social Acceptability of Goals, Learning Contexts, and Procedures for Young Autistic Children.Journal of autism and developmental disorders · 2025Article
- Neurodivergence, intersectionality, and eating disorders: a lived experience-led narrative review.Journal of eating disorders · 2024Review
- Social Validity of Pivotal Response Treatment for Young Autistic Children: Perspectives of Autistic Adults.Journal of autism and developmental disorders · 2024Article
- The Foundations of Autistic Flourishing.Current psychiatry reports · 2023Review
- Applied Behavior Analysis and the Abolitionist Neurodiversity Critique: An Ethical Analysis.Behavior analysis in practice · 2023Review
- Exploring Critical Components of Physician-Patient Communication: A Qualitative Study of Lay and Professional Perspectives.Healthcare (Basel, Switzerland) · 2023Article
- At a Crossroads-Reconsidering the Goals of Autism Early Behavioral Intervention From a Neurodiversity Perspective.JAMA pediatrics · 2022Article
- Neurodiversity as Politics.Human development · 2022Article
- Annual Research Review: Shifting from 'normal science' to neurodiversity in autism science.Journal of child psychology and psychiatry, and allied disciplines · 2022Review
- A capabilities approach to understanding and supporting autistic adulthood.Nature reviews psychology · 2022Review
- Exploring life with autism: Quality of Life, daily functioning and compensatory strategies from childhood to emerging adulthood: A qualitative study protocol.Frontiers in psychiatry · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
1 author.
Funding
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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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.