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  • Title: Using Experience Sampling Methodology to Capture Disclosure Opportunities for Autistic Adults.
    Author: Love AMA, Edwards C, Cai RY, Gibbs V.
    Journal: Autism Adulthood; 2023 Dec 01; 5(4):389-400. PubMed ID: 38116059.
    Abstract:
    BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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. WHY IS THIS AN IMPORTANT ISSUE?: Disclosure is choosing to tell someone that you are autistic. Nondisclosure is choosing not to tell someone you are autistic. This can be difficult for many people and can have a significant impact on their life. WHAT WAS THE PURPOSE OF THIS STUDY?: We wanted to explore disclosure opportunities for autistic people. We wanted to know what these experiences looked like over 2 months and on a daily basis. WHAT DID THE RESEARCHERS DO?: The research team asked autistic adults to complete a survey through a smartphone application every time they considered sharing that they were autistic over 2 months. The questions asked participants about their thoughts, feelings, and behaviors right after the experience. WHAT WERE THE RESULTS OF THE STUDY?: Our participants shared 231 disclosure opportunities with us over 2 months. Some people shared no experiences, while others shared up to 19 experiences. On average, people shared six experiences. People told us how these opportunities went, and we found five common threads (“themes”) across their experiences. First, when deciding whether to disclose or not, autistic people considered how safe they felt in their environment and with the people around them. Autistic people often thought about what they were hoping to gain by disclosing, and if there was nothing to gain, they decided against it. We learned that disclosure takes a lot of energy. We also learned that other people responded to disclosure in positive, neutral, and negative ways across all contexts. Finally, we found that our participants tried to learn from their experiences before the next time they thought about disclosure. WHAT DO THESE FINDINGS ADD TO WHAT WAS ALREADY KNOWN?: Our findings were similar to previous research that explored how complex autistic disclosure is. However, by gathering information in real time (instead of relying on recall), we learned that a decision to disclose is not only weighing up personal advantages and disadvantages, but also takes into consideration how safe the person feels in a particular environment and how much energy they feel they have at the time. We also learned that sometimes people do not disclose because they are worried about how someone might respond, but other times they simply feel there is no benefit to disclosure. WHAT ARE THE POTENTIAL WEAKNESSES IN THE STUDY?: We understand that the experiences of our participants may not apply to all autistic people. Also, because participants had to use a computer or smartphone to be in the study, the findings may be different for individuals who were not able to participate. HOW WILL THESE FINDINGS HELP AUTISTIC ADULTS NOW OR IN THE FUTURE?: The findings help us to listen to autistic voices and learn about their experiences. We have used the results to make resource guides. This includes a guide for autistic people (including an easy English version) and a guide for nonautistic people. These resource guides can be found within the Supplementary Data, on our research website, or by getting in touch with the authorship team.Link to “a guide for autistic people” https://www.autismspectrum.org.au/uploads/documents/Research/Disclosure-opportunities-resource-guide-for-Autistic-people-Easy-English.pdf Link to “easy English version” https://www.autismspectrum.org.au/uploads/documents/Research/Disclosure-opportunities-resource-guide-for-Autistic-people_2022-12-12-005526_vgvt.pdf Link to “non-autistic people” https://www.autismspectrum.org.au/Supporting-Autistic-people-who-may-want-to-disclose.
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