Contrasting Views of Autism Spectrum Traits in Adults, Especially in Self-Reports vs. Informant-Reports for Women High in Autism Spectrum Traits

Taylor, Sara; Gehringer, Brielle; Dow, Holly C.; Langer, Allison; Rawot, Eric; Smernoff, Zoe; Steeman, Samantha; Almasy, Laura; Rader, Daniel J.; Bućan, Maja; Brodkin, Edward S.

doi:10.1007/s10803-022-05822-6

Cited by 4 publications

(2 citation statements)

References 74 publications

(94 reference statements)

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“…While informant report can provide relevant and helpful information, it is problematic to assume that self‐ and informant‐ratings represent the same underlying construct and are interchangeable. Indeed, there are meaningful differences between self‐ and informant‐reports for a wide variety of PROMs (De Los Reyes, 2011), for example in the area of self‐determination (Shogren et al, 2021; Tomaszewski et al, 2020), and these discrepancies may be moderated by demographic and clinical characteristics of both raters (Taylor et al, 2022). Self‐report is also particularly important for subjective constructs such as mood and well‐being, as well as behaviors that may not be observable by informants (e.g., restricted and/or repetitive behaviors and interests (RRBs) or bullying at school during unstructured time; Demaray et al, 2013; McDermott et al, 2020).…”

Section: Current Issues In Autism Prom Researchmentioning

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: Current Issues In Autism Prom Researchmentioning

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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“…The concordance between informant-report and selfreport for assessing autistic adults has been found to be moderate (Sandercock et al, 2020;Taylor et al, 2022). There are several reasons why self-and informant-reporting may differ, including some aspects of autism being internal states and not directly observable, observer bias (e.g.…”

Section: Aim Of the Current Studymentioning

confidence: 99%

First things first: An exploration of the effects of psychoeducation for older autistic adults

Lenders,

Ouwens,

Wilting

et al. 2024

Autism

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A psychoeducation program that was originally developed by the Dutch Association for Autism was adjusted for older adults to enhance its feasibility and efficacy in later life. In this study, we explored the effects of this adapted psychoeducation program for older autistic adults in a pre-test–post-test 6-month follow-up design. A total of 61 patients (55–78 years) and 44 proxies (a person close to them) participated in the study; attrition rate was high for the follow-up assessment. As hypothesized, an increase in knowledge and acceptance of the diagnosis was observed, with a strong and positive correlation between patients and proxies for knowledge. Furthermore, ambiguous results were observed on coping with the diagnosis and no positive effects on psychological distress were found. The feedback of participants and proxies about the psychoeducation program was largely positive. Future research with larger group samples and larger time scales is necessary to gain more insight into the effectiveness of the psychoeducation program. It seems worthwhile to further adjust the program to the needs and requirements of older adults, and to help older autistic adults to construct a new narrative of themselves, and the life they have lived, in the light of the recent autism diagnosis. Lay abstract After receiving an autism diagnosis, psychoeducation (i.e. information regarding autism) is a first intervention. We adjusted a psychoeducation program that was originally developed by the Dutch Association for Autism for older adults to enhance its feasibility and efficacy in later life. We expected that participants would report an increase in knowledge and acceptance of the diagnosis and that people close to them would also observe this. Indeed, we found this and participants and those close to them agreed on this. Furthermore, we found some evidence that older autistic adults were better at coping with their autism. We found no positive intervention effects on psychological distress. The feedback of participants and informants about the psychoeducation program was largely positive. In future research, we advise using larger group samples and larger time scales and we also advise to further adjust the program to the needs and requirements of older adults, and to help older autistic adults to construct a new narrative of themselves, and the life they have lived, in the light of the recent autism diagnosis.

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Self- and Informant Report in a First-Time Diagnosis of Autism Spectrum Disorder in Adulthood: the Role of Females

Pagán,

Izuno-Garcia,

Hughes

et al. 2023

Adv Neurodev Disord

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Contrasting Views of Autism Spectrum Traits in Adults, Especially in Self-Reports vs. Informant-Reports for Women High in Autism Spectrum Traits

Cited by 4 publications

References 74 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

First things first: An exploration of the effects of psychoeducation for older autistic adults

Self- and Informant Report in a First-Time Diagnosis of Autism Spectrum Disorder in Adulthood: the Role of Females

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