Using Experience Sampling Methodology to Capture Disclosure Opportunities for Autistic Adults

Area of Science:

• Neurodevelopmental conditions
• Autism disclosure
• Social interaction

Background:

• Autistic individuals' disclosure experiences yield mixed findings, with differing outcomes reported from autistic versus nonautistic perspectives.
• Previous disclosure studies lack ecologically valid methods, potentially introducing memory biases and reducing real-world representativeness.

Purpose of the Study:

• To capture real-world outcomes of autistic adults' disclosure opportunities.
• To utilize ecologically valid methods for a more representative understanding of disclosure experiences.

Main Methods:

• Employed experience sampling methodology with 36 autistic adults over 2 months.
• Incorporated coproduction principles throughout the research process, from conception to dissemination.
• Collected data on 231 disclosure opportunities, analyzing decisions to disclose or not disclose autism.

Main Results:

• Two-thirds of recorded opportunities (n=153) involved autistic adults disclosing their diagnosis.
• Qualitative thematic analysis revealed five themes concerning thought processes, reactions, and reflections on disclosure.
• Findings highlight the complexity of disclosure decisions, influenced by internal and external factors.

Conclusions:

• Disclosure decisions and their outcomes are multifaceted, impacted by both personal and environmental influences.
• Enhanced support for autistic adults and increased understanding among nonautistic individuals can mitigate negative disclosure experiences.
• Improving disclosure processes is crucial for the daily mental well-being of autistic adults.