“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

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.