Using Experience Sampling Methodology to Capture Disclosure Opportunities for Autistic Adults.

Abstract

Despite a recent surge in literature contributing to our understanding of autistic individuals' disclosure experiences, the findings remain mixed. Research based on autistic people's perspective often indicates negative outcomes, while research that focuses on nonautistic perspectives is more positive. In addition, no disclosure study has used ecologically valid research methods, which help to reduce the risk of memory biases and are more representative of real-world experiences. The aim of this research was to capture outcomes from real-world disclosure opportunities as reported by a diverse range of autistic adults. Thirty-six autistic adults reported their disclosure opportunities through experience sampling methodology (58% female, 28% male, and 14% nonbinary), multiple times per day or week for 2 months. Importantly, we embedded coproduction from conception to dissemination, ensuring that the outputs are relevant and beneficial for the autistic community. In total, participants recorded 231 disclosure opportunities (M = 6.42, SD = 4.83). Two-thirds of opportunities (n = 153) were categorized as disclosure, where the participants decided to share they were autistic, and 33.8% (n = 78) were labeled nondisclosure, where the participants decided not to share that they were autistic. Qualitative thematic analysis of open responses resulted in five themes that illustrated the thought processes during disclosure opportunities, the reactions of others, and reflections following disclosure for autistic adults in our study. These findings show that disclosure decisions and outcomes are complex and are influenced by both internal and external factors. Both support for autistic adults navigating this process and knowledge for nonautistic individuals on the experiences of their autistic friends, family, and community members will help to alleviate negative experiences and improve the mental well-being of autistic adults who face these decisions daily.