"I've Absolutely Reached Rock Bottom and Have No Energy": The Lived Experience of Unemployed and Underemployed Autistic Adults.

Background: Autistic adults are underrepresented in the employment market, and those in work are commonly underemployed. Our study aimed to gain an understanding of autistic adults' experiences of unemployment and underemployment. Methods: Eight autistic adults who self-identified as currently unemployed or underemployed who were actively seeking to change their employment status participated in semi-structured interviews, analyzed using interpretative phenomenological analysis. Results: Four group experiential themes were identified: feeling paralyzed (the past weighs heavy; fragile self-confidence); powerlessness (lack of agency; systemic support failures); negative perceptions (feeling misunderstood; fear of judgment; pressure to meet societal expectations); and recognizing our needs (managing mental health difficulties; importance of self-understanding). Participants felt paralyzed by employment experiences, which impacted their confidence to progress with their career aspirations. Autistic people felt misunderstood, judged, and powerless within support systems, which had implications for their mental health. Participants recognized the importance of managing their mental health needs during times of unemployment and underemployment via self-care and seeking psychological support. Conclusion: Putting resource into understanding, acknowledging, and addressing processes within and around employment should be priorities for policy makers if they are serious about improving support to help autistic people find and stay in work. Community Brief: Why is this an important issue?: Autistic people are less likely to have a job than non-autistic people. Autistic people who do have a job are likely to work fewer hours than they want, be in a job that that doesn't fully use their skills or education, or not get paid enough to meet their basic needs.What was the purpose of this study?: To communicate autistic adults' experiences of unemployment and underemployment to improve understanding of what this is like and what may help.What did the researchers do?: We developed interview questions in collaboration with two autistic adults. We interviewed eight autistic adults who identified as being unemployed or underemployed who were actively seeking to change their employment status. We asked them about the impact their experiences had on their day-to-day lives. We identified themes from what the interviewees said using interpretative phenomenological analysis (IPA).What were the results?: Interviewees described feeling paralyzed and stuck at their current employment status because of previous traumatic experiences both within the workplace and around employment processes. They felt misunderstood, judged, and powerless within systems surrounding employment. This impacted their mental health and ability to return to work or progress within their career. Most participants were discovered autistic in adulthood, which increased self-understanding, awareness of employment needs, and the importance of managing their well-being.What do these findings add to what was already known?: The findings demonstrate that prior negative experiences around employment can have profound, enduring effects on autistic adults. This study highlights the challenges faced by autistic adults throughout the employment process and the impact these experiences have on their well-being and ability to progress back into work or within work. Autistic adults experienced a lack of understanding of both autism in general and a lack of empathy toward them as individuals on the part of the employer and colleagues. Further, there was no evidence of responsibility being taken by the employer to mitigate their gaps in knowledge. There is a clear need to work toward practical solutions as highlighted within this study. As such, there is a need for investing resource into understanding, acknowledging, and addressing insufficient and inadequate employment processes, both pre- and post-recruitment.What are potential weaknesses in the study?: Our findings reflect the experiences of a small group of people, so their experiences will not apply to everyone. The majority of the interviewees were discovered autistic in adulthood, and there is a lack of diversity, in that the interviewees were well educated, mostly over the age of 45 years, and mostly White British.How will these findings help autistic adults now or in the future?: This study helps us better understand the experiences of unemployed and underemployed autistic adults and the barriers they face. Our findings highlight the importance of putting resource into understanding, acknowledging, and addressing these issues around employment for autistic people. This will be imperative for organizations and policy makers if they are serious about improving the employment rates and addressing needs of autistic people.