Evaluating the Use of Self-reported Measures in Autistic Individuals in the Context of Psychiatric Assessment: A Systematic Review

Kim, Soo Youn; Lecavalier, Luc

doi:10.1007/s10803-021-05323-y

Cited by 3 publications

(1 citation statement)

References 96 publications

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“…Scoring of measures also often requires a binary gender selection, which raises additional validity concerns given the disproportionate gender variance within the autistic community (Pecora et al, 2020). Furthermore, most psychometric studies of PROMs in autism have been conducted with youth and people with average or above cognitive abilities (for a review, see Kim & Lecavalier, 2022) and PROMs are often not developed with consideration of autistic adults, those with intellectual disability (particularly in the moderate or severe/ profound range), or those who do not communicate with spoken words. Notably, issues of validation and generalization are certainly not exclusive to autism research, and there is ongoing debate in the literature regarding the expectation for full psychometric validation in the target population (Hughes, 2018).…”

Section: Measure Validation and Generalizationmentioning

confidence: 99%

Measurement matters: A commentary on the state of the science on patient reported outcome measures (PROMs) in autism research

Schiltz,

Williams,

Zheng

et al. 2024

Autism Research

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High quality science relies upon psychometrically valid and reliable measurement, yet very few Patient Reported Outcome Measures (PROMs) have been developed or thoroughly validated for use with autistic individuals. The present commentary summarizes the current state of autism PROM science, based on discussion at the Special Interest Group (SIG) at the 2022 International Society for Autism Research (INSAR) Annual Meeting and collective expertise of the authors. First, we identify current issues in autism PROM research including content and construct operationalization, informant‐structure, measure accessibility, and measure validation and generalization. We then enumerate barriers to conducting and disseminating this research, such as a lack of guidance, concerns regarding funding and time, lack of accessible training and professionals with psychometric skills, difficulties collecting large representative samples, and challenges with dissemination. Lastly, we offer future priorities and resources to improve PROMs in autism research including a need to continue to evaluate and develop PROMs for autistic people using robust methods, to prioritize diverse and representative samples, to expand the breadth of psychometric properties and techniques, and to consider developing field specific guidelines. We remain extremely optimistic about the future directions of this area of autism research. This work is well positioned to have an immense, positive impact on our scientific understanding of autism and the everyday lives of autistic people and their families.

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Section: Measure Validation and Generalizationmentioning

confidence: 99%

Measurement matters: A commentary on the state of the science on patient reported outcome measures (PROMs) in autism research

Schiltz,

Williams,

Zheng

et al. 2024

Autism Research

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Stability and Validity of Self-Reported Depression and Anxiety in Autistic Youth

Kim,

Lecavalier

2024

J Autism Dev Disord

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The aim of this study was to assess test-retest reliability and diagnostic validity of self-report instruments of depression and anxiety in autistic youth. Participants were 55 autistic youth aged 8–17 years presenting with depressive or anxiety symptoms. They were interviewed with the Kiddie Schedule for Affective Disorders and Schizophrenia for School-Age Children (K-SADS-PL) and completed the Children’s Depression Inventory, Second Edition – Self Report Short (CDI 2:SR[S]) and the Revised Child Anxiety and Depression Scale (RCADS) twice, separated by a two-week interval. Test-retest reliability was measured with intraclass correlation coefficients (ICCs), and diagnostic validity was assessed using receiver operating characteristic (ROC) curves with the summary ratings on the K-SADS-PL as the criterion. The effect of participant characteristics was analyzed through a moderation analysis. Generalized anxiety (GAD) and social anxiety disorder (SOC) were the two most prevalent disorders in the sample. Test-retest reliability for most of the subscales was good (ICC = 0.74 − 0.87), with the exception of the RCADS obsessive-compulsive disorder (OCD) and GAD. The Adaptive Behavior conceptual score was a significant moderator of the reliability of the CDI 2:SR[S]. The ROC analysis suggested the RCADS SOC and the CDI 2:SR[S] to be good screening tools with inadequate specificity when appropriately sensitive cutoff scores are used. Optimal cutoff scores in this sample were lower than originally published. The findings suggest that autistic youth can provide stable reports of anxiety and depressive symptoms over time. Diagnostic validity varied according to the construct and instrument.

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The experience of anxiety for autistic children and young people: A thematic synthesis review

Neilson,

Bond

2023

Research in Autism Spectrum Disorders

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Evaluating the Use of Self-reported Measures in Autistic Individuals in the Context of Psychiatric Assessment: A Systematic Review

Cited by 3 publications

References 96 publications

Measurement matters: A commentary on the state of the science on patient reported outcome measures (PROMs) in autism research

Measurement matters: A commentary on the state of the science on patient reported outcome measures (PROMs) in autism research

Stability and Validity of Self-Reported Depression and Anxiety in Autistic Youth

The experience of anxiety for autistic children and young people: A thematic synthesis review

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