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.
Keywords: employment; participatory research; priority-setting; research priorities.
Why was this study done?: It is important for autism research to identify and study topics that are important to autistic people. Employment has been highlighted as an important topic by autistic people in many studies. However, we don't know what specific topics employment research should look at.
What was the purpose of this study?: We wanted to know which employment-related topics autistic people think are important to research and understand why.
What did the researchers do?: We created an online survey to ask autistic people about what employment research should look at. The survey asked participants about themselves (e.g., their age) and their employment experience (e.g., if they were employed or not). We also asked questions about what employment topics should be researched, why these topics are important, and what changes employment research should lead to. In total, 197 autistic people responded. We read through all the responses and grouped similar responses together.
What were the results of the study?: Lots of our participants found it hard to find and keep a job. They wanted research to make autistic peoples' experiences of employment better. For example, by making hiring processes better, and by making workplaces more inclusive. They also said that research should look at all parts of employment from getting a job, to leaving a job and retiring. Participants also talked about how research should be done. They said more autistic people should be included as researchers, and we should include different autistic people from different backgrounds.
What do these findings add to what was already known?: Our findings show that lots of autism-employment research is on topics that autistic people think are important. However, not much research has looked at later stages of employment, such as getting a promotion or retiring.
What are potential weaknesses in the study?: Most of our participants were White, female, employed and had a degree, but in the wider autistic population that isn't the case. People from other backgrounds may have different experiences of employment, and therefore want different research. We also don't know which topic is the most important because we didn't ask participants to rank the topics they spoke about.
How will these findings help autistic adults now or in the future?: This study highlights key topics that autism-employment researchers should look at. By showing where the gaps in research are, we can make sure that all the employment topics autistic people think are important are researched.
© Jade Davies et al. 2024; Published by Mary Ann Liebert, Inc.