Autistic Adults' Priorities for Future Autism Employment Research: Perspectives from the United Kingdom

Abstract

Background: A growing body of research has sought to understand autistic people's research priorities. Several of these studies have identified employment as a key research priority. Yet, there have been a few attempts to identify specific, actionable priorities within this area. Methods: Using an online survey, we asked 197 autistic people in the United Kingdom about their priorities for future autism-employment research. Results: Participants spoke of their challenges in gaining and sustaining meaningful employment and called for researchers to conduct research that results in direct improvements to employment experiences. Regarding their research priorities, participants indicated a need for research covering all aspects of the employment lifecycle from accessing employment to transitioning out of employment. Importantly, participants also discussed how such research should be conducted: with autistic people as co-researchers and ensuring a diverse range of autistic people are listened to. Conclusion: While much existing autism-employment research appears to align with the priorities outlined in this study, seemingly minimal attention has been paid to later stages of the work lifecycle (e.g., progressing into more senior job roles or transitioning out of work). By identifying disparities between autistic people's priorities and the research being conducted, we can support autistic people to drive the research agenda and ensure autism-employment research positively impacts the community it aims to serve.

“Retirement Is One Hell of a Change”: Autistic People's Experiences of Retiring

“…Many faced poor employment experiences, leading to feelings of exhaustion and burnout. 7,66 Unfortunately, all our formally diagnosed participants received their autism diagnosis in later life, leaving them without workplace adjustments throughout their careers. Together, poor employment experiences and a lack of adjustments were perceived to impact participants' job performance and employment longevity, ultimately impacting their financial preparedness for retirement.…”

“…One aspect of autistic aging that has been seemingly neglected within the literature, however, is retirement. This is despite the fact that autistic people have identified the topic as a research priority, 7 and that retirement is an experience that many autistic people who work will go through. Addressing the gap in knowledge around retirement experiences is essential to ensure autistic people can thrive and lead meaningful, fulfilling lives as they age.…”

“…First, many autistic people have poor employment experiences, including -but not limited tounderemployment, bullying, exploitation, and discrimination. 7,34,35 In such cases, retirement may offer a sense of relief from the challenges of navigating unsupportive working environments. Further, retirement typically affords a reduction in enforced social interaction, and an increase in free time to spend on focused interests -two factors that may be especially pertinent to autistic people.…”