I couldn’t find the information on autism, employment, and Autism at Work programs that I was interested in. Here’s how I created a survey to collect it myself.
When I signed up to participate in an autism employment program in the summer of 2018, I thought that my luck was changing. Since leaving graduate school in 2013, I had been mostly unemployed before spending two years working a series of low-paid assistant jobs in elementary and middle schools. The program claimed it would connect participants to tech companies that were looking to hire more neurodiverse employees, and prominently displayed an impressive list of partner companies on its webpage.
It has been nearly a year since I completed the program. As is so often the case, reality did not live up to the hype of the program flyer. Although I have recently been doing contract work for a non-profit startup, my career as a data analyst — something that could have put the statistics skills I developed during two years of human-computer interactions research to good use — never materialized.
Initially, I assumed I was the problem. Clearly, I wasn’t working hard enough to build my skills, or doing enough networking, or putting enough thought into my applications. I increased my efforts, carefully revising my resume to tailor it to each position I applied to, and accepting any help I could get to improve it. I wrote and re-wrote cover letters for every application. I got involved in local meet-ups, attended career fairs, and completed online courses to expand my technical skills. I sought out and applied to jobs through disability hiring initiatives. But although I gained knowledge and experience from my hard work, it has not yet resulted in a permanent job; and although I reached out to the program repeatedly, asking for guidance and assistance, as the months since my completion of the program dragged on, I felt more and more alone.
My experience made me wonder what the outcomes for most autistic people who participate in autism employment programs are. Since autism employment programs were getting so much press, and so many companies seemed to be starting their own, I assumed there would be a lot of research to support their approach. However, as I started looking into it more, I found that not only was there limited research on the most recent efforts to support autistic adults in finding meaningful careers, there also wasn’t exactly a wealth of research on autistic adults and community-based employment in general.
The more I read about autism and employment, the more it seemed to me that a lot of what was being presented as “truth” was based on assumptions, stereotypes, and outdated ideas about autistic people. For example, most of the autism employment programs I found stressed the interview process as the thing that holds autistic people back from gainful employment. While it’s definitely true that many autistic people (myself included) struggle in interviews, given the huge range of autistic experiences, assuming that interviews were the only or biggest issue struck me as simplistic. I also became concerned about the emphasis on technical jobs and the lack of outreach to and involvement of autistic adults in designing hiring and employment programs that targeted us.
I don’t doubt the good intentions of the people behind autism at work programs, and I think that programs that emphasize the skills and expertise autistic employees bring to a workplace can play a valuable role in the broader neurodiversity movement. However, at least in the United States, the lack of data about the outcomes for participants in these programs, and the frequent absence of engagement with autistic adults — particularly autistic women and people of color — hinders them from being as effective as many autistic people would hope. Additionally, even when corporate programs do get support from autistic people in designing and improving their hiring and employment practices, they often rely on input from autistic employees currently working at the company. While their input is incredibly valuable, it does not provide enough insight into the challenges faced by autistic people who have not been able to get jobs through the existing systems.
When I see things that I think are “wrong” in the world, my impulse is to do what I can to fix them. Since I wasn’t satisfied with the quality or breadth of information being used to create and improve autism employment programs, I decided to develop a survey to collect more (and hopefully better!) data. I started by looking for existing studies on autism and employment (particularly skilled, community-based employment). Disappointingly, many of the studies I found were small, and many of their conclusions were based on non-autistic people’s judgments of outcomes, rather than autistic people’s self-reported satisfaction with their employment. I also observed that young, white, male autistic people were over-represented in these studies, and that they often only looked at adults who had received special education services through high school. As I noted these shortcomings, I also made a point of building a list of questions that previous studies had asked in order to develop a survey of my own.
Once I had a draft list of questions, I started talking to other autistic people about their experiences. This was really hard, since I am often very uncomfortable speaking to people I don’t know. However, I felt that the work I was doing was important, so I did my best to contact people who I saw talking about autism and employment online. I am incredibly grateful to all the people who were kind enough to share their experiences and thoughts with me. I also presented about my research at AASCEND, a local group for autistic adults and their supporters. I used the input I received to create a first draft of the survey.
When the first draft of the survey was ready, I asked for more feedback. This time, I also spoke with researchers to make sure that I wasn’t overlooking any important details in my methodology. After revising the draft, I put a pilot version of the survey online. I recruited between 15 and 20 people (both autistic and non-autistic) to take it and give me feedback. Some of them took the survey on their own and wrote notes about what worked well and what needed improvement, which they emailed to me. Others sat down with me and talked through their thought process as they took the survey. Based on all the feedback I received on the pilot, as well as additional and ongoing conversations with other autistic adults, I created the final version of the survey, which is now online.
This survey isn’t perfect, but my hope is that the information I gather from it will encourage other people to conduct more research on this topic. My goal is to use the information I gather to help employers take the next step in supporting autistic people in finding and keeping meaningful jobs — from designing programs for us, to designing programs with us. If you would like to participate in the survey or learn more about the project, please visit the website I built for it.