'I fit the category of the box, it just doesn’t describe me well.' Exploring the perspectives of autistic women and gender-diverse individuals on self-report autism measures

by Nora Uglik-Marucha, Serafina Show, Silia Vitoratou, Francesca Happé, Hannah Belcher

Psychological assessments play a significant role in both clinical decision-making and the interpretation of research findings, with the quality of these inferences depending on the validity of the measures used. Recent evidence suggests there are gender differences in the presentation of autism, raising concerns about the validity of existing autism tools to measure autistic traits in women and the subsequent implications for clinical inferences and research. This study explored the perspectives of autistic women on the relevance of existing autism questionnaires to their lived experience, alongside additional input from gender-diverse individuals assigned female at birth (AFAB). Through interviews, focus groups, and online surveys, 22 autistic women and AFAB gender-diverse individuals shared their experiences using and perspectives on the Autism Spectrum Quotient-10, 14-item Ritvo Autism & Asperger Diagnostic Scale, and Broad Autism Phenotype Questionnaire. The interview data were analysed using reflexive thematic analysis, identifying two overarching themes: (1) questionnaires measure only one way to be autistic, and not in an autism-friendly manner, and (2) enhancing questionnaires’ relevance for autistic women and individuals socialised as female: key missing experiences to include. The findings suggest that some of the most frequently used autism measures may not fully capture the experiences of autistic women and AFAB gender diverse individuals. Significant gaps were identified, indicating that important aspects of the participants’ lived experiences were missing. Furthermore, concerns were raised about the questionnaires’ lack of relevance to the autistic population as a whole. The findings underscore the non-satisfactory content validity of these tools for measuring autism in autistic women and AFAB gender-diverse individuals. This highlights the need for their refinement to better reflect contemporary understandings of different presentations of autistic traits, particularly the impact of gendered experiences, in a way that avoids the introduction of possible new biases and remains relevant and accessible to autistic individuals.

Clinical outcomes and interventions related to sedentary behaviours in childhood, adolescent, and young adult cancer patients and survivors: a scoping review protocol

Introduction

Excessive sedentary behaviour (SB) is highly prevalent among children and adolescents and young adults (AYAs) treated for cancer. Although SB is associated with adverse health outcomes in adults with cancer, little is known about SB in younger cancer patients and survivors. In this scoping review, we aim to summarise current literature on (1) the association between SB and clinical outcomes and (2) results of intervention trials to reduce SB, specifically in paediatric and AYA cancer patients and survivors.

Methods and analysis

The scoping review will follow the five stages described in the Arksey and O’Malley methodology framework. We will conduct a comprehensive search in five varied electronic databases (PubMed, Embase, Web of Science, CINAHL and SportDiscus) for original articles published in peer-reviewed journals since 1 January 2000, and search reference lists of identified articles and previous review articles. All original research article types will be considered (ie, cross-sectional, cohort, interventional trials). Two reviewers will independently screen all articles based on predetermined inclusion and exclusion criteria, including (1) more than half the sample at the time of study must have been children (0–14 years old) and/or adolescent and young adults (AYAs, 15–39-year old) who were being or had been previously treated for cancer and (2) reporting of SB. Data will be extracted as a descriptive and quantitative summary of each study’s key characteristics and results. Study-specific quality assessment will be performed using established tools. Results will be presented in evidence tables with an accompanying narrative summary.

Ethics and dissemination

Ethics approval is not required as only publicly available data will be analysed. Results will be published in a peer-reviewed journal and may be presented at a scientific conference.

Registration details

The protocol is registered in Open Science Framework (https://osf.io/ua8z9).