For this Research Review, OAR is featuring a study not funded by OAR, “[I] don’t wanna just be like a cog in the machine:” Narratives of autism and skilled employment, to highlight community-based participatory research. For this study, OAR Scientific Council member and the study’s principal investigator, Dora Raymaker, Ph.D., and their fellow researchers focused on what skilled employment and employment success mean to autistic people. The researchers’ goal was to better understand the experiences and career trajectories of autistic people with skilled training — including people who felt they were successful. Specifically, they wanted to:
Understanding these experiences is an essential first step in developing and evaluating effective, systems-focused interventions to improve employment outcomes for autistic people with skilled training in a wide range of careers.
A research team from The Academic Autism Spectrum Partnership in Research and Education (AASPIRE), which is based at Portland State University’s Regional Research Institute for Human Services, conducted the research. AASPIRE works on research projects relevant to the needs of adults on the autism spectrum using community-based participatory research (CBPR). CBPR is an approach to research that acknowledges lived experience as equivalent in value to academic knowledge and equitably includes community partners in all phases of the research.
For this study, AASPIRE autistic community co-researchers collaborated in the following ways:
Some community co-researchers also helped with the analysis. Dr. Raymaker co-authored the paper with both community and academic partners.
Forty-five autistic people with skilled training agreed to share their experiences and insights with the research team through one-on-one interviews. Participants represented a wide range of skilled fields: arts/entertainment, athletics, law, education, engineering, health care, information technology, public administration, publishing, science/research, social work, and trades. The group ranged in age from 21 to 65 with a wide range of gender identities and educational backgrounds. Of those who were autistic, 22% said they communicated using alternative and augmentative communication and 42% used some form of disability services. Based on interview content, autistic participants included a mix of those diagnosed in childhood and as adults.
The team also interviewed 11 supervisors and eight key informants from within relevant systems (e.g. employment programs, disability employment policy, college internships) to further examine historical and contemporary thinking and support for autistic applicants and employees.
These are the main themes that emerged:
High stakes of disclosure
Participants described disclosure of an autism diagnosis as having a substantial impact on their employment experiences and outcomes, both positively and negatively. For example, an autistic employee pointed out a negative experience with disclosure: “I disclosed my [diagnosis] and had a group meeting with the two supervisors and the unit supervisor . . . I had to pay $180 out of pocket to have a phone conference with the psychologist who DX [sic] me and how it affected my employment. After that, they hammered me on the smallest things and I had the union rep knowing about it. She even mentioned . . . how that wouldn’t have occurred with other employees . . . . I got nailed for [something perceived as petty] and fired two weeks later. I appealed the termination and lost . . . . disclosing my DX, it has been nothing but hell when it has come to employment.”
Another had a more positive experience, saying, “I outed myself [as autistic] to my [supervisor] about a year [in] . . . and saw an immediate positive shift in our rapport, my results, and my overall demeanor…He showed a genuine interest in how my brain works, remained completely respectful of me, and kept an open dialogue with me about how I was doing. In turn, my mood changed and the quality of my work improved dramatically.”
Unconventional pathways to a career
Many participants described accessing jobs in ways that bypassed typical gatekeeping processes like interviews, which were frequently noted as an insurmountable barrier. They made strategic use of special interests, took advantage of the ability to demonstrate skills, used opportunities provided by mentors or family, or found specialized niches through design or chance. One participant related that the conjunction of special interests, a mentor, and the luck of timing started them on a long-term career path: I learned like really early on . . . how to use [graphic design software] when even professional graphic designers didn’t know what to do with any of it… and so that gave me a step into that kind of world.”
Disconnects with service and support systems
A number of participants described how programs designed for autistic people or people with disabilities struggled to understand and connect them with skilled settings. For example, one participant related: “I was a highly qualified candidate for WRP [a government program for people with disabilities] positions, but I never received any offers . . . I later found out the government agencies mostly use disability hiring programs such as WRP. . .to hire employees for unskilled positions . . . This is a problem, since those on the autism spectrum often do much better with positions involving analytical thinking than positions involving unskilled labor.
Another participant described getting a job at a call center through a vocational rehabilitation job developer that did was “incredibly stressful for me and my then VR counselor suggested I take Xanax during the day while at work. I eventually gave my notice as this was not the right fit for someone with my condition.”
Mental health challenges from trauma and burnout
This included challenges resulting from long histories of discrimination, bullying, and abuse, both within and outside of the workplace. A participant described what it felt like to find a job, “It hurts so much to put myself out there and be tossed aside . . . When I found work and tried to keep it, most times I would end up getting bullied by people there. I have a lot of PTSD [post-traumatic stress disorder] issues with bullying, so I do not take it well [and it leads to bad outcomes].”
Autistic participants also often worried about the impact of work on their mental health, including working too much without sufficient recovery time, or working in a toxic or unaccommodating workplace where they needed to expend extra effort to manage the environment. Many worried about work contributing to autistic burnout, which is characterized by “overall exhaustion, increased sensory sensitivity, and decreased abilities with its potential to destroy their ability to work.
Autistic advantages in the workplace
Participants and supervisors told stories about how special interests, autistic traits, or lived experience as an autistic person made them better at their job, love their work more, or succeed at their work. For example, one autistic employee gave an example of special interests at work: “In the course of my education, anatomy, physiology, pathology, and symptom pattern recognition . . . became a special interest. This meant I could focus my autistic superpowers on succeeding at work.”
Complex dimensions of discrimination
Most people described experiences of autism-related discrimination, most especially ableism. The impact of those discriminatory experiences impacted decisions about disclosure, ability to trust others, and mental health. One person discussed deciding to hide their autistic identity in the future after a particularly painful experience of discrimination: “I’ve had to treat my disability like it’s a thing that should be shamed even though I don’t believe that . . . I realized that once I acted like that I was able to work a lot better . . .”
Participants who also identified as a racial, ethnic, gender, or sexual minority described additional layers of workplace discrimination, such as racial typecasting, getting fired for being gay, or navigating the amplified risk of managing gender or sexual identity disclosure in addition to autism disclosure.
Successful Employment
When it came to successful employment, participants’ answers converged around:
One participant offered this description: “It really helps if it means something, if I feel like what I’m doin’ is meaningful to someone ’cause, I mean money’s important too [laughs] . . . and also a job that has opportunity for growth, that can lead to somethin’ else which—because people change over their lives and what’s good for you at one point is not always . . . don’t wanna do the same thing for twenty years. . .. [And] if it uses my skills that–or skills that I’m proud of . . . I guess there’s a bit of, like, recognition, recognition’s important and [I] don’t wanna just be like a cog in the machine, like, that sounds boring.”
Autistic participants made it clear that workplace cultures that allowed them to be openly autistic and in control of their work were key to their success. Supervisors supported what the employees said and further clarified strategies for success. Specifically, supervisor strategies converged around the following:
“By incorporating the process of CBPR (community-based participatory research), we are able to do research that the community needs and wants to see,” notes a community co-researcher. “Our research work is being done in furtherance of our cause, not just our caregivers and support professionals.”
“Autistic children do grow up to become autistic adults, and autistic adults hold employment,” comments another. “What AASPIRE has done with our research on autism and skilled employment is let the research world know that we have jobs, and we have specific needs for our jobs to meet.” Helping to meet the need for research on autistic adults is thrilling, says a fourth community co-researcher, given that “autistic adults are notoriously under-researched. For that reason. As a community project lead, I get to recruit other autistic adults to use their lived experiences in furtherance of research that really gets at our needs.”
“Autism and employment are complex issues, especially with the diversity of skills held by people on the spectrum. However, these findings start to suggest leverage points, such as improving human resources processes and supervisor responsiveness to disclosure, where intervention could effect positive change for a wider range of people,” notes Dr. Raymaker. “Collaborating with the autistic community not only helps to ensure the usefulness and integrity of the research by enriching it with the expertise of lived experience, but leads to new ways of approaching solutions to difficult problems that are of importance to the community. I feel it’s vital moving forward to take a holistic approach to autism employment services. Consider the whole person, the relationship between work, life, and lived experiences, and the role of employers and professionals in taking responsibility for solutions.”
Sherri Alms is the freelance editor of The OARacle, a role she took on in 2007. She has been a freelance writer and editor for more than 20 years.
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