“People Might Understand Me Better”: Diagnostic Disclosure Experiences of Autistic Individuals in the Workplace

Abstract

Background: Autistic individuals face challenges in the workplace, particularly related to social communication. Diagnostic disclosure may mitigate these challenges, but it also exposes individuals to potential discrimination. This study aimed to share the diagnostic disclosure experiences of autistic adults in the workplace to help employers better understand the process, and help other autistic individuals make an informed decision about disclosure. Methods: The participants in this study were 238 clinically diagnosed, U.K.-based autistic adults with employment experience. Participants completed an online survey, comprising both open-ended and closed-ended questions, that asked about their experiences of disclosure in the workplace. Specifically, questions focused on when in the employment process participants disclosed, to whom the disclosure was made, what factors were involved in the decision to disclose, and what the impacts were of this decision. Results: Our findings suggest that when deciding to disclose, the participants were most concerned about how this might affect the attitudes of others in the workplace. Participants most often only disclosed selectively, while over a third disclosed to everyone. Many participants chose to disclose when completing the application materials or after starting the job, but rarely in the interview process. Many also disclosed after encountering issues at work (i.e., retrospective disclosure). Just over a third of participants rated the impact of disclosing to supervisors and coworkers positively. Subsequent adjustments made were even less positively endorsed. Conclusions: Autistic individuals must weigh the potential benefits of disclosure against the costs. This study highlights the need for organizations, rather than autistic individuals, to take more responsibility for facilitating disclosure and improving outcomes to it. Specific recommendations include the creation of clear pathways for disclosure in workplaces, and an ongoing commitment to organization-wide autism training to reduce stigma and discrimination for autistic employees. Lay summary Why was this study done? Autistic individuals face challenges in the workplace. Telling someone that you have an autism diagnosis (disclosure) might be one way of addressing these challenges (e.g., by increasing the understanding of others). However, the literature on disclosure shows mixed outcomes and rarely gives voice to autistic people. What was the purpose of this study? The purpose of this study was to explore the disclosure experiences of autistic job seekers and employees and gain insight into their decision-making. What did the researchers do? We conducted an online survey with 238 clinically diagnosed autistic adults with employment experience. Our participants answered some questions about their personal information (e.g., age) and their past work experience before completing survey questions about disclosure. We read through everyone's answers to open-ended questions and put the answers into groups, such as “Reasons to disclose” and “Reasons not to disclose.” What were the results of the study? When deciding whether or not to disclose, our participants were most concerned about what other people they worked with would think. Most of our participants only told some people at work about their diagnosis, and many only disclosed after issues arose in the workplace. Over a third, however, disclosed to everyone. Participants said they were most likely to disclose on the application materials or after starting a job, not during a job interview. Just over one-third said that telling their supervisors or coworkers they were autistic had a positive impact, and that the changes made by their supervisors afterward were positive. Over a third said the changes made by their coworkers were neither positive nor negative. What do these findings add to what was already known? This is the first large-scale U.K.-based study on the disclosure experiences of autistic adults in the workplace. Our findings suggest that autistic people focus most on what other people will think and how others will treat them if they disclose. We found that disclosure during interviews is unlikely—contrary to what previous studies focused on—and that we need to conduct research looking at disclosure in more likely scenarios. What are potential weaknesses in the study? Most of our participants were white and female, but in the wider autistic population that isn't the case. We had many more participants who had told people at work about their autism diagnosis than those who had not. We also could not ask any follow-up questions about our participants' experiences because the survey was online. How will these findings help autistic adults now or in the future? Knowing more about the experiences of autistic people can help individuals to make an informed choice about disclosing their diagnosis. This study highlights that we need to involve nonautistic employers, colleagues, and organization leaders in the disclosure process to improve autism knowledge and acceptance, and hopefully improve outcomes for autistic people.