Commentary: The construct validity of ‘camouflaging’ in autism: psychometric considerations and recommendations for future research ‐ reflection on Lai et al. (2020)

Williams, Zachary J.

doi:10.1111/jcpp.13468

Cited by 27 publications

(16 citation statements)

References 14 publications

(33 reference statements)

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“…Other psychometric properties of the PROMIS Global–10 General QoL Score, such as test–retest reliability, DIF across repeated administrations, and sensitivity to change, were also not assessed in the current study and should be investigated in future psychometric work. Notably, measure validation is an ongoing process (Chan, 2014; Williams, 2022), and it is paramount that other researchers interested in QoL in autistic adults seek to independently replicate and extend the current psychometric findings in future studies.…”

Section: Discussionmentioning

confidence: 99%

Measuring subjective quality of life in autistic adults with the PROMIS global–10: Psychometric study and development of an autism-specific scoring method

Williams

Cascio

Woynaroski

2022

Autism

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Quality of life is widely acknowledged as one of the most important outcomes in autism research, but few measures of this construct have been validated for use in autistic people. The goal of the current study was to examine the psychometric properties of the Patient-Reported Outcomes Measurement Information System Global–10, an established self-report measure of health-related quality of life, in a sample of 901 autistic adults (predominantly female and adult-diagnosed) recruited from the Simons Foundation Powering Autism Research for Knowledge cohort. Using an item response theory framework, we performed a comprehensive psychometric evaluation of the Patient-Reported Outcomes Measurement Information System Global–10 in this sample, examining its latent structure, differential item functioning, reliability, and construct validity. After developing an autism-specific measurement model, the Patient-Reported Outcomes Measurement Information System Global–10 demonstrated excellent psychometric properties in the current sample, including excellent model-data fit, high reliability, minimal differential item functioning across subgroups of autistic adults, and an expected pattern of correlations with external variables. Exploratory analyses indicated that lower quality of life was associated with female sex and identified as a sexual/gender minority. A free online score calculator has been created to facilitate the use and interpretation of normed Patient-Reported Outcomes Measurement Information System Global–10 general quality of life latent trait scores for clinical and research applications (available at https://asdmeasures.shinyapps.io/promis_qol ). Lay Abstract Quality of Life an outcome that both researchers and autistic advocates agree is extremely important to consider when implementing services, interventions, and supports for autistic people. However, there has been little research on the topic of how quality of life can best be measured in autistic people or whether existing quality of life questionnaires are appropriate for use in the autistic population. This study aimed to validate an established quality of life measure, the Patient-Reported Outcomes Measurement Information System Global–10, in a large sample of autistic adults recruited online. We created a new way to score the Patient-Reported Outcomes Measurement Information System Global–10 scale and generate a “General quality of life” score specific to autistic adults. This new score performed very well in this sample, showing very little measurement error and relating in expected ways to similar constructs, such as physical health and emotional distress. Exploratory analyses found that lower quality of life was associated with female sex and self-identification as a sexual or gender minority (i.e. LGBTQ + identity). These findings suggest that the new Patient-Reported Outcomes Measurement Information System Global–10 quality of life score is a reliable and valid measure of quality of life in autistic adults, although additional studies are necessary to further explore its measurement properties in other subsets of the autistic population, such as individuals with intellectual disabilities. This measure is freely available for use as an outcome in both research and clinical practice, and an online score calculator is available to support the use of this measure in real-world applications.

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Section: Discussionmentioning

confidence: 99%

Measuring subjective quality of life in autistic adults with the PROMIS global–10: Psychometric study and development of an autism-specific scoring method

Williams

Cascio

Woynaroski

2022

Autism

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“…Additionally, many Autistic adults report negative subjective outcomes as a result of having to meet inappropriate and unrealistic benchmarks, such as feeling they have to “pass” as neurotypical and mask or “camouflage” their Autistic behaviors (Bargiela et al, 2016 ; Cage & Troxell-Whitman, 2019 ; Cook et al, 2021 ; Hull et al, 2017 ; Livingston et al, 2019 ). In some cases, pursuit of these objectives has been cross-sectionally associated with poor mental health, reduced wellbeing, and suicidality (Cassidy et al, 2018 ; Hull et al, 2019 , 2021 ), although causal relationships have yet to be demonstrated (Williams, 2021 ). Furthermore, first-person accounts of “Autistic burnout” warn of the cumulative load of excessive camouflaging and other stressors (Higgins et al, 2021 ; Raymaker et al, 2020 ), raising questions about traditional assumptions that high intervention intensity is always desirable (see also discussion by Pellecchia et al, 2019 , and a recent randomized trial by Rogers et al, 2020 demonstrating limited effects of intervention intensity).…”

Section: Improving the Alignment Of Ndbis With Neurodiversitymentioning

confidence: 99%

Neurodiversity and Autism Intervention: Reconciling Perspectives Through a Naturalistic Developmental Behavioral Intervention Framework

Schuck

Tagavi

Baiden

et al. 2021

J Autism Dev Disord

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Proponents of autism intervention and those of the neurodiversity movement often appear at odds, the former advocating for intensive treatments and the latter arguing that autism must be accepted as a form of diversity. The history of behavioral intervention has understandably outraged many in the Autistic community, though many still value supports focused on quality of life. This commentary argues that Naturalistic Developmental Behavioral Interventions (NDBIs) hold promise for bridging the gap between early intervention and the neurodiversity movement. However, we recognize NDBIs have much room to grow and suggest multiple strategies for improvement. We believe these updates are not only feasible for clinicians and researchers to implement but will ultimately lead to improved quality of life for Autistic individuals.

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“…Importantly, this nascent research has intrinsic limitations in that it does not yet represent the diversity of experiences across the autism spectrum (29). Ongoing research is still defining, operationalizing, and empirically validating the afore-mentioned constructs in a clinical and research context (54)(55)(56)(57)(58). Nevertheless, considering some internal experiences of ASC may yield valuable insights beyond the inferences based solely on observable behaviors.…”

Section: Psychopathology and Suicidality In Asc: The Role Of Social C...mentioning

confidence: 99%

A molecular framework for autistic experiences: Mitochondrial allostatic load as a mediator between autism and psychopathology

Mahony

O’Ryan

2022

Front. Psychiatry

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Molecular autism research is evolving toward a biopsychosocial framework that is more informed by autistic experiences. In this context, research aims are moving away from correcting external autistic behaviors and toward alleviating internal distress. Autism Spectrum Conditions (ASCs) are associated with high rates of depression, suicidality and other comorbid psychopathologies, but this relationship is poorly understood. Here, we integrate emerging characterizations of internal autistic experiences within a molecular framework to yield insight into the prevalence of psychopathology in ASC. We demonstrate that descriptions of social camouflaging and autistic burnout resonate closely with the accepted definitions for early life stress (ELS) and chronic adolescent stress (CAS). We propose that social camouflaging could be considered a distinct form of CAS that contributes to allostatic overload, culminating in a pathophysiological state that is experienced as autistic burnout. Autistic burnout is thought to contribute to psychopathology via psychological and physiological mechanisms, but these remain largely unexplored by molecular researchers. Building on converging fields in molecular neuroscience, we discuss the substantial evidence implicating mitochondrial dysfunction in ASC to propose a novel role for mitochondrial allostatic load in the relationship between autism and psychopathology. An interplay between mitochondrial, neuroimmune and neuroendocrine signaling is increasingly implicated in stress-related psychopathologies, and these molecular players are also associated with neurodevelopmental, neurophysiological and neurochemical aspects of ASC. Together, this suggests an increased exposure and underlying molecular susceptibility to ELS that increases the risk of psychopathology in ASC. This article describes an integrative framework shaped by autistic experiences that highlights novel avenues for molecular research into mechanisms that directly affect the quality of life and wellbeing of autistic individuals. Moreover, this framework emphasizes the need for increased access to diagnoses, accommodations, and resources to improve mental health outcomes in autism.

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Commentary: The construct validity of ‘camouflaging’ in autism: psychometric considerations and recommendations for future research ‐ reflection on Lai et al. (2020)

Abstract: Conflict of interest statement: See Acknowledgements for full disclosures.

Cited by 27 publications

References 14 publications

Measuring subjective quality of life in autistic adults with the PROMIS global–10: Psychometric study and development of an autism-specific scoring method

Measuring subjective quality of life in autistic adults with the PROMIS global–10: Psychometric study and development of an autism-specific scoring method

Neurodiversity and Autism Intervention: Reconciling Perspectives Through a Naturalistic Developmental Behavioral Intervention Framework

A molecular framework for autistic experiences: Mitochondrial allostatic load as a mediator between autism and psychopathology

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