“I Wish This Tool Was Available to Me Sooner”: Piloting a Workplace Autism Disclosure Decision-Aid Tool for Autistic Youth and Young Adults

Abstract

Background: For autistic youth and young adults, deciding whether to disclose their autism at work may be complex since they are newly entering the workforce and are at an impressionable developmental period. Decision-aid tools can help someone make a choice regarding a topic/situation. We developed a workplace autism disclosure decision-aid tool called DISCLOSURE (Do I Start the Conversation and Let On, Speak Up, and REveal?) to support autistic youth and young adults navigate disclosure decision-making. In this study, we aimed to assess the DISCLOSURE tool's (1) impact on decision-making and self-determination capabilities and (2) usability, feasibility, and acceptability. Methods: This was a single-arm pre–post pilot study. The DISCLOSURE tool comprises three interactive PDF documents and videos. Thirty participants (mean age of 23.5 years) completed online surveys before and after interacting with the DISCLOSURE tool. We used descriptive statistics for usability, feasibility, and acceptability. We calculated the Wilcoxon signed rank and paired t-tests to determine pre–post changes in decision-making and self-determination capabilities (Decisional Conflict Scale–Low Literacy Version [DCS-LL]; adapted Arc's Self-Determination Scale). We analyzed open-ended data using conventional (inductive) content analysis. Results: There were significant decreases in DCS-LL total and subscale scores (p < 0.0001) and a significant increase in Arc's total score (p = 0.01), suggesting important improvements. There were no significant increases for Arc's psychological empowerment and self-realization subscales (p = 0.05; p = 0.09). Median scores (4.0/5.0) indicate that participants agreed that the DISCLOSURE tool is acceptable, feasible, and meets the usability criteria. We developed four categories to describe the open-ended data: (1) disclosure capabilities, (2) the role of others, (3) positive tool impact and feedback, and (4) minimal tool impact and constructive feedback. Discussion: Findings are suggestive of the DISCLOSURE tool's ability to support workplace autism disclosure decision-making. Future studies should ascertain the DISCLOSURE tool's effectiveness, explore others' feedback (e.g., employers), and how to incorporate the tool into relevant employment and vocational programs. Autistic youth and young adults face a dilemma when starting their first jobs: should they disclose their autism at work? This is a complicated decision and involves considering many factors, benefits, and risks. Our team developed a decision-aid tool to help with this decision-making process called DISCLOSURE (Do I Start the Conversation and Let On, Speak Up and REveaL?). This study is important because it is the first to assess the DISCLOSURE tool and explore if it may be helpful. This study had two main goals. First, we assessed if the DISCLOSURE tool helps to build self-determination and decision-making knowledge, skills, and confidence. Second, we explored if participants thought that the DISCLOSURE tool is usable, acceptable, and can be used in the real world (feasible). We recruited 30 participants (average age of 23.5 years) to complete two online surveys—one before and one after using the DISCLOSURE tool. We analyzed the data to observe if there were changes in decision-making and self-determination knowledge, skills, and confidence. We also explored how participants rated the acceptability, feasibility, and usability of the DISCLOSURE tool. We read through open-ended answers to group them into categories. We found important improvements in participants' decision-making knowledge, skills, and confidence. The DISCLOSURE tool shows promise to improve self-determination. Participants agreed that the DISCLOSURE tool is usable, acceptable, and feasible. Many participants said that the DISCLOSURE tool can help them make disclosure decisions at work. Some participants said that the tool was not as helpful for them. This is because they already had disclosure knowledge and experience. Overall, the study results suggest that the tool may support some autistic young people with the disclosure decision-making process. Few tools exist that support disclosure decision-making. Research also shows that young autistic people find it hard to make autism disclosure decisions at work and may need help. This study is the first to assess a tool that may close important gaps and help autistic young people make disclosure choices. We need to continue testing the DISCLOSURE tool since this is the first time that we assessed it. We also missed some important perspectives in this study. Most participants were white, cisgender women, or nonbinary from Ontario, Canada, and needed internet and a tech device to take part. Results show that the DISCLOSURE tool may help autistic youth and young adults make disclosure choices at work. We will continue to assess the DISCLOSURE tool to make sure it is effective. Autistic youth and young adults could use the DISCLOSURE tool in the future to help guide their disclosure choices at work. Relevant service providers could also use the DISCLOSURE tool with their autistic clients.