As increasing numbers of autistic adults are seeking and gaining employment, the experiences of autistic adults in the workplace is critical to consider. Autistic adults encounter a range of challenges in obtaining and keeping employment and often report a range of negative experiences in the workplace. The current research reports the results from a large, national exploratory study on the experiences of autistic adults in the workplace as well as their thoughts on how to improve these experiences for the autism community. In particular, participants reported challenges with the interviewing process, which requires very specific and consistent social behaviors, as well as with feeling comfortable disclosing one's autistic status at work. These challenges are often connected with public misperceptions about autism. The article discusses these challenges as well as strategies to improve autism-related understanding and awareness in the workplace. This work is critical to conversations about diversity in the workplace.
Since the mid-1990s, both rates of people diagnosed with autism and public recognition of autism has risen dramatically. The Centers for Disease Control and Prevention (CDC) estimates that one in sixty-eight, or about 1.46%, of children meet the criteria for Autism Spectrum Disorder (ASD; Autism and Developmental Disabilities Monitoring Network Surveillance Year 2010 Principal Investigators, 2014). Meanwhile, media representations of autism, including television shows, films, and books featuring autistic characters, are becoming more common, yet often present a narrow, specific perspective of autistic people (Kimberly Maich, 2014; Prochnow, 2014; Sarrett, 2011). Some representations do not explicitly label a character as autistic and instead rely on common autistic tropes to suggest a character is autistic. The success of these representations demonstrates public familiarity with the diagnostic label of autism as well as with at least some traits associated with the condition.
The growing autism community, as well as more public representations of autism, have overlapping impacts on the state of employment among autistic adults. As more autistic children leave public education, more autistic adults will be seeking and obtaining employment. At the same time, individuals who work with and hire autistic adults are increasingly likely to know an autistic person or encounter representations of autism in the media, which may provide inaccurate or limited perspectives on what autism is and looks like. Thus, as more autistic adults enter the workforce they will encounter people with preconceived, often stigmatizing, ideas about autism and people who identify as autistic. The current article relies on findings from a national exploratory survey of autistic adults to demonstrate how public notions of autism can provide challenges to autistic adults who are seeking employment and in their workplaces. First, a short overview of the current state of employment among autistic adults and the research methods used for the current study is provided. Then, results from the survey concerning challenges during the interview process and decisions on disclosing one's autistic status at work will be described. The article concludes with suggested methods for improving the workplace for autistic adults based on addressing attitudinal barriers and misconceptions about autism that often present challenges in obtaining and maintaining employment. These strategies are based on comments and suggestions made by research participants on how to develop better and more accurate understandings of autism in the workplace to improve employment success and experiences.
Autism and Employment
Autism, or Autism Spectrum Disorder (ASD), is classified as a developmental disability that encompasses a range of cognitive, behavioral, sensory, and social traits with varying levels of significance or impairment. Thus, autistic individuals require different levels of support and demonstrate a range of constellations of traits. ASD is often, but not always, identified in childhood and continues throughout the lifespan (Autism and Developmental Disabilities Monitoring Network Surveillance Year 2010 Principal Investigators, 2014; Feinstein, 2010; Smith, Reichow, & Volkmar, 2015). Within the autistic population there is a growing advocacy movement based on neurodiversity, which asserts that autism is just one manifestation of human neurological expression and, thus, should not be subject to cure or normalization efforts. Instead, neurodiverse adherents encourage wider social acceptance and understanding of autistic difference to better incorporate autistic individuals into our communities. In this model, autism is considered central to identity formation, making the tenets of neurodiversity critical for fostering positive disability identities for autistic individuals. This approach is one reason autistic self-advocates prefer the term 'autistic person' over 'person with autism', which reflects person-first language used in other disability groups (Kapp, Gillespie-Lynch, Sherman, & Hutman, 2013; Sarrett, 2016; Silberman, 2015). The current article adheres to this preference by using identity-first language.
Despite increased public awareness about autism and a growing advocacy movement, post-secondary outcomes for autistic adults are discouraging in comparison to both non-disabled adults and adults in other disability groups (Shattuck et al., 2012). In terms of employment, people with disabilities overall have dramatically lower employment rates than people without disabilities (Gillies, 2012). These trends continue even in the wake of efforts encoded in the American with Disabilities Act (ADA) that aim to reduce employment discrimination. Scholars have noted these efforts have fallen short of impacting attitudinal barriers to employment, or what has been called the "spirit" of the law (Gould et al., 2015; Maroto & Pettinicchio, 2015). Data from 2013 shows that while 72% of people without disabilities in the United States were employed, only 33.6% of individuals with disabilities were employed. This rate drops to 23.4% for individuals with cognitive disabilities and to 8.5% people with cognitive disabilities who received Social Security Income (Butterworth et al., 2014). Reported rates of employment within the population of autistic adults vary, however the employment rate for this population has generally hovered around 50% (Hendricks, 2010; Shattuck et al., 2012; M. J. Smith et al., 2015).
A recent longitudinal study on post-secondary outcomes for autistic adults showed that while about two-thirds of their participants (N=73) participated in competitive employment or post-secondary education at some point over the 12-year study period, only a quarter were doing so consistently. Of note, this group was comprised entirely of men. Among those employed, only 16.4% were working more than ten hours a week. The researchers found that being female, coming from a family with a low socio-economic status, and having more significant autistic traits, especially as related to social interactions, led to lower rates of employment (Taylor, Henninger, & Mailick, 2015). Additionally, many studies cite the presence of stigma as an important barrier to employment (Beatty & Kirby, 2006; Gillies, 2012; Jans, Kaye, & Jones, 2012; Johnson & Joshi, 2016; Lindsay & DePape, 2015; McLaughlin, Bell, & Stringer, 2004; Santuzzi, Waltz, Finkelstein, & Rupp, 2014).
Poor employment outcomes persist even though access to employment support programs is increasing. Community inclusion researcher Alberto Migliore and colleagues found that although the number of autistic adults accessing vocational rehabilitation services doubled between 2006 and 2010, only half of those who accessed the service in 2010 found employment. Additionally, these individuals only averaged 22 hours of work a week (Migliore, Butterworth, & Zalewska, 2012). Outside of specific vocational rehabilitation programs, some disability-related organizations publish employment guides for adults with disabilities. Many of these focus on whether and how to disclose one's disability status at work ("Consultants' Corner Volume 01 Issue 13," 2016; "OneStops.info," 2016; "The 411 on Disability Disclosure: A Workbook for Youth with Disabilities | NCWD/Youth," 2016; "The Disclosure Dilemma for Advocates-GWU.pmd - The Disclosure Dilemma for Advocates.pdf," 2016). The presence of these guides point to the fact that many autistic adults, and adults with other hidden disabilities, find talking about their disabilities at work or in a job interview a challenge and are seeking strategies to do so in a way that both deflects stigma and enables employment supports.
Management studies scholars Joy Beatty and Susan Kirby (2006) accurately explain the difficult balance of factors to consider when deciding whether to disclose the presence of a hidden, or invisible, disability such as ASD:
Invisibility creates a dilemma for employees seeking the benefits of legal protection against discrimination in the workplace because to receive the benefits they must first disclose their situation. Yet the act of disclosing their difference is potentially career limiting because in doing so they create the grounds for possible stigma and discrimination. In this way, both positive and negative career outcomes hinge upon disclosure. (p 30)
The decision to disclose one's disability in the work place is highly personal and is often dependent on the specific job environment, need for accommodations, disability type and significance, and perceived stigmas (Jans et al., 2012; Johnson & Joshi, 2016; Santuzzi et al., 2014). There is evidence that cognitive and mental health related disabilities are associated with more stigma in the workplace than physical disabilities (Jans et al., 2012). Fears of stigma and of increased workplace monitoring are reasons many autistic adults do not disclose their autism status at work, even though this prevents access to accommodations and legal protections (Johnson & Joshi, 2016).
Among the research on stigma and disability in the workplace, a 2004 report by management scholar Mary McLaughlin and colleagues provides a useful theoretical background and overview of the ways in which disability stigma impacts employment experiences. In the report, they build on previous stigma scholarship by Erving Goffman and others to define stigma as a "negative discrepancy between the actual or inferred attributes of an individual in that context, such that the individual is perceived as aberrant or atypical" (p. 304). Specified to disability and employment, non-disabled co-workers and employers map negative and inaccurate perceptions related to a disability onto work skills, habits, and expectations. The authors present and explore six dimensions of stigma proposed by stigma researchers in 1984—disruptiveness, origin, aesthetic qualities, course, concealability, and peril—as they relate to the acceptance of employees with disabilities in the workplace (McLaughlin et al., 2004). Many of these features were confirmed by the participants of the current study, who stressed the impact of autism-related stigmas and misunderstandings to their experiences in interviews and decisions on whether to disclose their autism status in the workplace. As is demonstrated below, attitudinal barriers proved salient for the participants of the current study as well.
The data presented here is a part of a bigger study aimed at collecting information about post-secondary (i.e., higher education and employment) experiences of autistic adults, with a focus on gathering information on how to makes these experiences more autism friendly. The larger study was reviewed and approved by the Emory Institutional Review Board (IRB #00087911) on April 8, 2016 and consisted of two components, an online survey and online, follow-up focus groups, both of which were designed to be as autism-friendly and accessible to the autism community as possible. The survey was developed based on previous research in the area and improved with the input of autistic self-advocates as well as individuals not involved in the field of autism. This input was gathered to ensure that the survey was accessible to individuals not involved in neurodiversity or autism research, used autism-friendly language, and covered topics important to the autistic community.
The resultant survey had a total of eighty-seven items, including the consent questions, instructions throughout, and demographic information. Forty-five questions focused on employment experiences with specific questions on finding, applying to, and interviewing for jobs as well as experiences with job tasks, co-workers, and supervisors. Skip logic was used to prevent participants from encountering questions about experiences they did not indicate encountering and so the actual number of employment questions answered by participants varied. The survey was open from April 14, 2016 until July 1, 2016 and distributed to various online forums, support groups, and organizations focused on working with adults with intellectual and developmental disabilities. To ensure access, participants were given three months to complete the survey and unlimited opportunities to save and return to the survey.
Focus group questions were designed based on initial survey responses and included six questions on employment experiences. Participants who agreed to be contacted about the focus groups were given the option of either an online, text only option or an audio only phone option. All but one participant opted for the online version. In order to increase accessibility, the focus group was designed in a bulletin board format. On a secure site, participants were invited to a group where the focus group questions were posted. Participants were instructed on how to maintain anonymity while participating in the discussions. The site was available to participants for four days, over which time they and the researcher could answer the questions, respond to comments, and propose new topics of discussion. In this way, participants who had difficulty with vocal speech had ample time to express their thoughts. Six focus groups were completed between May 30, 2016 and July 12, 2016.
Data from both the survey and focus groups were analyzed using Grounded Theory, meaning that codes and code groups were developed from the data. A separate codebook was developed for the education and employment sections of both the survey and the focus groups, resulting in a total of four codebooks. Random selections of roughly 5% the survey and focus group responses from both the education and employment selections were chosen and coded by the PI and trained coder, after which the codes were reviewed and the codebooks were updated. This process was repeated with new selections and 100% consensus coding was obtained (Bernard & Ryan, 2010).
The study included individuals who identified as being autistic, were eighteen years or older, and lived in the United States. A total of ninety-four individuals accessed the survey, seven of whom indicated they were ineligible to continue beyond the consenting page. Of the remaining eighty-seven, sixty-two indicated they had attempted to find employment and answered at least half of the employment questions and, thus, were included in data analysis. Thirty-one participants took part in the online focus groups, which ranged in number from three to seven individuals per focus group.
Over half (35%) of participants identified as being cis-female, 16% as cis-male, 13% as other, 8% as gender fluid, 6% as transgender male, and 2% transgender female. The participate pool skewed somewhat young, with 44% of participants being between the ages of 18 and 25, 31% between 26 and 35, 13% between 36 and 45, 8% between 46 and 55, and 5% over 55. Geographic distribution was fairly mixed, with 29% percent of participants living in the Northeast, 23% in the Southwest and 23% for the Southeast, 11% in the Northwest, and 11% in the Midwest. Three percent did not report geographic location.
A summary of the diagnostic profile of the participants can be found in Table 1. Forty-seven percent of participants had a primary diagnosis of ASD, 27% reported a primary diagnosis of Asperger Syndrome, and 13% were self-diagnosed, a category that is contested within the autism community but which was included here because of its relevance to the autistic self-advocacy community (Sarrett, 2016). Three percent of participants reported a diagnosis of Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) and 10% of participants did not indicate a primary diagnosis. Interestingly, 31% of participants were diagnosed in adulthood (22 years or older), a time that often coincides with initial attempts to find employment. Sixteen percent of participants were diagnosed between the ages of 4 and 10, 15% were diagnosed between the ages of 11 and 18, 11% between 19 and 21, and 2% before the age of three. Seventy-one percent of participants reported comorbid diagnoses, and many of these individuals reported several conditions. Of these participants, the most commonly reported comorbid disorder was anxiety (57%) followed by depression (39%). This is in line with research on comorbidity and autism (Bruggink, Huisman, Vuijk, Kraaij, & Garnefski, 2016; Ghaziuddin, Ghaziuddin, & Greden, 2002; Gillott & Standen, 2007; Mannion & Leader, 2013). Thirty-six percent of participants with comorbidities reported being diagnosed with ADD/ADHD and several participants reported a range of physical disabilities, such as asthma, cardiac concerns, cerebral palsy, or immune-related conditions.
Participants Employment Status
Table 2 summarizes the employment history of the participants. Almost all participants graduated high school (95%) and 35% reported a Bachelor's degree as their highest level of education. Twenty-nine percent reported completing some college. Thirteen percent of participants had at least one Masters degree, 8% had doctoral or medical degrees, and 6% reported having Associate degrees. Eight percent of participants reported high school as their highest level of education. Thirty-two percent of participants reported being employed part-time, 31% reported being employed full-time, and 3% were self-employed. Of the 17% not employed, eight (13% of total) were looking for employment. Fifteen percent of the participants reported other employment status', including being a student or stay at home parent. Only 13% participants were receiving Social Security Income (SSI).
When asked about history of applying to jobs, 23% of participants reported applying to between one and five, 19% between six and ten, and 21% participants reported applying to fifty-five or more. The remainder was spread out between these groups. This spread in job applications may reflect the relatively young age of the participant pool. When asked the longest duration at a single job, 44% of participants reported staying at a job between one and five years and 31% reported one year or less. Only 11% of participants reported staying at a job for more than ten years. These results may also be related to the relatively young age of the participants. The shortest amount of time at a job clustered between one and six months (30%) and between one week and one month (26%).
The fields in which participants reported working in were highly varied. Forty-four percent of participants worked in retail or sales, 27% participants reported working in both non-profit and in internships, 24% of participants had worked in customer service, 19% reported working in administrative positions, and 19% reported contract work. Interestingly, these jobs often involve regular contact with the public or with other employees, which are positions autistic adults are reported to avoid (Drew, Sytsma-Jordan, & Mayville, 2003). Participants were also asked what field they felt they were most qualified; 61% of participants reported fields in which they had been employed at some point.
Navigating the Job Interview
Interviews, which rely heavily on a particular set of social interaction behaviors and skills, are often a step in the employment process that is concerning for autistic adults. Most employment readiness programs include information and/or training on how to navigate job interviews, focusing on items such as hygiene and dress, emphasizing job-related skills, and whether and how to disclose one's autism status. Programs use role-playing, scripts, and mock interviews to prepare and practice for job interviews (Lorenz, Frischling, Cuadros, & Heinitz, 2016; Wilczynski, Trammell, & Clarke, 2013). In addition to challenges navigating the social norms of an interview, people with autism, and other disabilities, may lack the same kind or amount of background work or internship experiences as their peers, meaning that discussing relevant skills and qualifications for positions may be difficult because this population has fewer opportunities to develop those skills (Lindsay & DePape, 2015).
While some participants of the current study noted that they did not have difficulties with interviews, the majority of participants found challenges with the interview process. Many participants spoke repeatedly about interviews as being particularly difficult or stressful and as an area in which modifications could be employed to make interviews more accessible to autistic individuals. One focus group participant noted, "I cannot pass the job interview. I have been through practice interview after practice interview and while I can get into an interview, I cannot get past them!! I do everything right too." This participant highlighted the fact that some people do not benefit from traditional job readiness training strategies. Another participant responded to this comment saying, "I do everything right, too, only to not be hired. The problem is the fixation on 'fit.'" This participant, on the other hand, emphasized the misalignment between the normative expectations of a job interview or employment setting and the autistic experience. These two comments highlight a primary argument of the current work: the need to shift away from, or compliment, interventions that focus on altering the behavior and skills of autistic individuals to develop strategies to making the interviewing process more accessible to autistic individuals, as well as a range of non-autistic or even non-disabled people who find interviewing difficult.
When asked on the online survey about the easiest part of interviews, most participants did not provide an answer. Eight percent of participants answered that nothing about interviewing was easy. Alternatively, the question on the most difficult part of the job interview had a 93% response rate (of the sixty-one who reported having had job interviews in the past). Of those who responded to this question, 23% mentioned difficulties with expressive language, such as "thinking on my feet," "processing questions," or "being able to speak at all," as the most challenging feature of interviews. Eye contact was the second most reported feature, with 17% specifically noting this act as difficult. Anxiety was the next most common difficulty, with 16% of respondents reporting interview anxiety. Twelve percent of these participants noted having difficulties with knowing when to lie and when to tell the truth during interviews when asked, for instance, about one's weaknesses. Five percent of these responses focused on specifically trying to appear normal or pass as non-autistic in interviews.
While, as mentioned above, many of the intervention programs aimed at helping autistic adults navigate the interview experience focus on alleviating these difficulties by teaching autistic adults how to manage their behaviors, most autistic adults who participated in the current study suggested ways to adapt the interview process to become more universally accessible. Eighty-nine percent of survey participants made suggestions to this effect. And while 13% of participants did note that more practice or training would be helpful, another 8% of participants also noted that interviews should focus solely on skills or the needs of the job and 10% of participants made similar comments to suggest that interviews should focus less on people skills and social interactions.
A focus on modifying the social aspects of job interviews was mirrored in many of the suggestions on how to modify the process. Eleven percent of participants suggested having a text only or online option for interviews. One participant noted that with interviews in this format, "I could focus entirely on the content of my answers rather than being distracted by how to modulate my voice, position my arms/shoulders/head/torso/legs/ feet….etc." Additional suggestions for the format of interviews included not needing to provide eye contact, being clear and avoiding "trick questions" (i.e., those with unclear intent, such as the question on one's weakness mentioned above), the option to take breaks throughout, obtaining questions ahead of time, and having a support person accessible throughout the interview. All of these suggestions in some way serve to lessen the social pressure of an interview, and benefit both disabled and non-disabled persons.
Participants in the focus groups mirrored these comments. Many suggested focusing on alternative formats for interviews such as having them online or over the phone or requesting skill demonstrations rather than the traditional, discussion-based interview. One participant noted: "A competency test would be good. Look at my job skills, not at my interviewing skills. They're really, really bad.. no [sic] amount of practice will ever make them better. I ramble and it makes me look like an idiot." Another participant pointed out the consequences of the interview process, saying, "You interact with a stranger or two for maybe only an hour or two and your future of possibly twenty years is decided or not. Requirements; death, taxes and interviews. Ha!"
Despite the humor, this remark is an expression of the deep concern over the implications of not performing well in interviews and feeling that the traditional interview format is biased against people with autism. "The fix," one participant noted, "requires a massive, conscious shift in organizational cultures to remove this bias, among others." Programs like the ones referred to above that provide social skills training specific for interviews are the current focus of efforts to improve this process, however these programs place the responsibility entirely on the autistic adult, whose autism and autistic characteristics remain beyond the interview. Thus, these programs are limited. Modifications like the ones suggested here will not only help improve employment outcomes for autistic adults, but improve this process for many other people, both with and without disabilities. Providing interviewees with options of interview format (i.e., online, in person, on the phone, over email) can help companies better identify individuals whose skills are the best match for the job without the intermediary complication of social job interview performance.
Interview training may help some potential employees successfully navigate interviews, but that assistance may not continue to be useful once the interview is over and the individual is employed. In other words, teaching an autistic adult how to perform in a job interview can be very helpful for obtaining a job, but once at that job, the person must contend with navigating the workplace environment as an autistic individual. One initial, and possibly ongoing, concern autistic employees must contend with is whether to disclose their autism status to co-workers and employers.
Disclosure and Workplace Attitudes
For individuals with hidden disabilities, the decision to disclose their disability status to others involves a careful consideration of the consequences of doing so for that particular person in that particular employment setting. As was discussed above, this decision often includes balancing the likelihood of encountering stigmatizing attitudes, which may put one's job at risk, and accessing accommodations and legal protections to increase workplace success (Beatty & Kirby, 2006; Santuzzi et al., 2014). The decision can have significant personal health outcomes as well. Research has demonstrated that not disclosing a hidden social identity can have negative outcomes, including a sense of isolation and fragmentation of one's identity as well as poor workplace performance (Beatty & Kirby, 2006). Participants of the current study expressed concern over this issue and focused on a desire to be more open about one's autism at work, but in the presence of a more aware and understanding workplace environment.
The initial online survey did not include any questions that targeted disclosure at work. However, comments about the more difficult aspects of the workplace environment and suggestions on how to improve these experiences often referred to feeling misunderstood, having to act 'normal', or desiring a more accepting environment. These comments led to the decision to include a specific question about disclosure at work in the focus group.
Of the thirty-one focus group participants, twelve individuals discussed the reasons they decided to disclose at work. Five individuals noted that they always disclose, two of whom are employed in jobs that work with individuals with developmental disabilities. Six other individuals noted that they decided to disclose at work for more understanding from co-workers and supervisors. Several paired this disclosure with an emphasis on the benefits of employing autistic individuals such that, after disclosing, they would emphasize the reasons their autism made them a good employee.
Some participants focused on positive implications and outcomes their disclosure could have for others. One participant described how the benefits of letting employers know about one's autism status extends beyond the individual disclosing: "Administrators and supervisors across career fields need training in what autism is, what accommodations work and why, and how to be accepting and accommodating while maintaining high expectations for product/service quality." This participant sees personal disclosure as one effort in the service of active autism advocacy and awareness. As will be described more fully below, this awareness was a frequently asserted desire. Similarly, one individual noted that "even after people saying they don't want to hire me because of my poor communication skills [during the interview] I still continue to disclose because it's the only way to let people know why I don't interview well." This individual's reason for disclosing goes beyond developing more understanding at work to address creating more understanding in larger communities by explaining the implications of having idiosyncratic social and communication styles for an interview. This act also has the unstated effect of informing the interviewers of how non-normative communication styles can impact this particular encounter.
There were a few participants who stopped disclosing at work because of negative experiences. For some, people simply did not believe they were autistic or it seemed to be too much information for their co-workers. One participant noted: "Eventually, I realized that it was too much information, too soon in most cases. Theoretically with complete disclosure you would think it would improve relations with coworkers, but I found otherwise." Another participant used to disclose in an effort to be "an outspoken advocate and activist around autism" but has come to "fear people's preconceived biases." This participant went on to explain the impact this decision has had:
I've lost these [advocacy] skills, and am losing them more as I choose to stay silent. If I were not so passionate about my job – it really is the perfect place for me in so many ways – it would absolutely not be worth this small death, this loss of identity I've undergone. I hope some day I will feel safe to come out…
This statement demonstrates the research finding that people who do not disclose feel fragmented. Here, a proud autistic identity has 'died' in an effort to ensure autistic bias does not impact how this participant is perceived at work and, importantly, how this person's performance at work is judged.
In addition to the above comments, this particular participant was one of many who feared that disclosing one's autism status at work would lead to co-workers and employers interpreting all their behavior "through an autism lens." Eleven other participants made comments about not disclosing for fear of stigma or discrimination and five noted that they would not disclose because of misunderstandings about autism that would then be applied to them. One participant recounted a conversation with a director of a program who said, "I think it's so great that people like you can do this…" The participant explained the impact of this kind of comment and remembered thinking in response: "Hey, wait a minute! What do you mean, People Like You??? I happen to be just like you! Sheesh. I am one of Those people in her mind, but one of Those people who seems to be making it in the world." This seemingly positive, off-hand comment had a large impact on this participant, who aptly pointed out the inherent stigma in this interaction and the process of Othering in disability discrimination (Mik-Meyer, 2016; Simpson, 2012). Finally, several participants reported a fear that people would not believe that they are autistic because they do not match popular media representations of autism, an experience some had encountered previously. These fears could largely be overcome with more and better autism understanding and acceptance at the workplace. Interestingly, job security was only rarely mentioned as a reason not to disclose at work, with only two participants noting a fear of losing their job despite protections through the Americans with Disabilities Act (ADA; Harkin, 1990).
A 2012 qualitative study of 10 adults with various disabilities found that these individuals reported difficulties in attaining meaningful employment, discrimination, disclosing, and constructing an identity (Gillies, 2012). The findings from the current study are deeply connected, yet more focused on the experiences of autistic adults. As noted, this population faces significant and persistent barriers in obtaining and maintaining employment and, when autistic individuals are employed, they are often conflicted about letting employers and co-workers know they are autistic. Most employment readiness programs take a traditional medical model approach (Shakespeare, 2013) that attempts to change the autistic individual to fit into the neurotypical workplace by teaching autistic individuals skills to navigate the interview or providing tips on how and when to disclose their autism status. While these approaches are useful in some cases, they fail to address the larger issues in play, namely stigmas and misunderstandings about autism, that are making these experiences uncomfortable at best or entirely inaccessible at worst. The current study suggests that, rather than working on altering autistic behavior, working towards creating more accepting environments for autistic individuals will have vast diversity benefits to any workplace.
The online survey generated a host of comments about how to create more accepting and autism-friendly workplace environments. When asked how to improve employment experiences and spaces, 17% of participants made comments about increasing acceptance of difference and 29% made specific comments about more autism understanding. One survey participant said that workplace experiences would improve if people stopped "acting like it's a huge deal that people are a little bit different" and another noted, "basically, we need a massive cultural shift." Part of this shift may be an increased focus on job performance rather than difference. "Recognize what skills are really important for the job and what aren't," one participant noted. "Just because I'm awkward with my co-workers doesn't mean I'm less successful at my actual duties." Similarly, another participant asked that employers "learn about us, de-stigmatize autism so we can be ourselves. It takes so much effort to pretend to be another person."
One way to increase workplace understanding and acceptance of autism is to have workplace trainings for both employers and employees. A recent review of disability focused diversity training programs for the workplace found that, although there are many disability training programs available, there is very little research on the effectiveness of these programs. The authors found only three studies evaluating disability diversity training programs and noted that they all have problems, determining them all to be of low quality (Phillips, Deiches, Morrison, Chan, & Bezyak, 2016). While a full review of diversity training research is beyond the scope of the current article, a recent review of 65 studies evaluating workplace diversity training programs identified some moderate benefits of diversity training. Programs that were in person, rather than computer-based, and used activities were more effective in changing attitudes. Also, trainings that were more than four hours long and were distributed over several sessions, rather than one long session, were more effective. Also, programs led by motivated trainers that focused on a specific diversity topic, rather than multiple, are more effective (Kalinoski et al., 2013).
The development and dissemination of these workshops must involve people with disabilities. As one participant requested, "Disability sensitivity seminars [should be] required for everyone and taught by actually disabled people." Involving people with disabilities at every stage of workshops or seminars about disability, or autism, will ensure trainers are motivated and that the information provided reflects the experiences of disability rather than assumptions of disability made by non-disabled individuals. Providing statistics and factual information about disability—such as dispelling disability myths and outlining policies and laws like the ADA (Phillips et al., 2016)—should be balanced by theories and research about how disability is perceived by others. For example, contrasting the medical model of disability, which situates a disability solely in the individual and, thus, requires all interventional strategies to be focused on changing, curing, or fixing the disabled person, with the social model, which emphasizes the ways our built and social environments create disabling experiences for people with non-normative bodies and/or minds (Shakespeare, 2013), would be an important feature of these trainings. This information can illuminate the ways people often place the responsibility for successfully navigating their worlds squarely on the disabled individual, rather than focusing on how people with disabilities are members of communities in which everyone relies on everyone else.
This notion of interdependence, rather than pure independence (Kittay, 2015), is another critical component of appropriate disability training. Explaining that everyone depends on other people for nearly all aspects of daily living, such as food and clothing production, transportation, or emotional support, but at varying degrees can work to humanize people with disabilities among non-disabled groups. Further, these trainings should focus on the variability within disability groups as well as disability rights and stigma. Important events in disability history, such as eugenics and educational access, can help to contextualize the experiences of people with disabilities such that it becomes clear how the remnants of a long history of stigma, discrimination, and violence continue to create harsh living environments for people with disabilities.
In terms of autism specifically, ubiquitous media representations should be addressed and discredited. Media representations of autism often present the quirky genius trope or the tragically impaired, challenging child. For example, the character of Sheldon Cooper from the television show The Big Bang Theory (Cendrowski, 2007) and Charlie Babbit from Rainman (Levinson, 1988) are archetypes of autistic people with particular intellectual gifts along with obvious social idiosyncrasies on which many members of the public rely as demonstrations of autism. Most autistic people, however, do not relate to these characterizations and, as some participants of the current study described, encounter people who find the dissonance between expectations of autism and the presentation of autism in real life discrediting. Teaching coworkers and employers how to critically examine popular representations of autism will help foster more nuanced and understanding perspectives of autistic people.
One participant created a list of possible scenarios reflecting the consequence of inaccurate notions of autism, noting that the likelihood of reactions like this prevents this person from disclosing at work:
- "I have a cousin who is Autistic, so now I'm going to project my few experiences with that person onto you"
- "I have seen some Autism Speaks propaganda and so I know you're not Autistic because you're clearly OK with your Autism"
- "Here's all the reasons why I don't think you're Autistic…."
- "I'm totally open minded and all, but we really can't accommodate special needs, without knowing what they might be or caring to ask"
By providing employers and co-workers with more nuanced and contextualized information about autism and disability, these misconceptions will be challenged and, hopefully, overcome.
When employers and co-workers have more awareness about autism such that discrimination and stigma is reduced, more autistic people will feel comfortable disclosing their autism at work, leading to better psychological and job performance outcomes. One participant recounted a positive disclosure experience that was based on workplace acceptance. After disclosing to a supervisor, this participant then disclosed "to the entire 3000-person workforce in an online interview on the company's home page." This interview was widely read and the participant received very positive feedback, including people relating similar experiences in their families or with other co-workers. "Coworkers now understand why not only I but others may have different outlooks," this participant explained. "It truly made a difference and I'd do it again in heartbeat, although my experience may not be typical of course." This person's positive disclosure story is exceptional and ideal, but could become more common with better understanding and acceptance of autism.
Again, it is critical to create these trainings or workshops with autistic or disabled people. The current study found that attitudinal barriers present challenges in interviewing for jobs and in interactions within the workplace. These attitudinal barriers have created difficult and stressful situations for these participants that have affected their identity and comfort in the workplace. The next step is to gather precise information on how to best impart autism-related information in the workplace and what exactly should be included. The information presented here can be built upon to create site-specific disability sensitivity training that involves disabled people or disability advocacy groups in the creation and presentation of the information. It is important to note that this strategy is not suggesting employers approach disabled employees and ask them to prepare a training. Rather, employers should seek and hire individuals interested or trained in developing awareness workshops in order to avoid disability exhibitionism and spotlighting individuals not prepared or willing to be marked as the source of disability knowledge. Research on the effectiveness of these programs can lead to better information on how best to eliminate autism, or disability, related stigmas in the workplace.
There are some limitations to the current study that suggest areas of more focused, future research. As an exploratory study, race, ethnicity, or income were not included. These factors may provide important insight into the types of participants likely to provide input on a study such as this one. There may also be selection bias such that participants in the current study, though designed for accessibility, failed to capture individuals who are unable to fill out the survey and focus group forums without assistance, suggesting this participant group may have reflected individuals with certain manifestations of autistic traits and not others. Future research on the experiences of employees with more significant disabilities may provide interesting insight into other workplace challenges and accommodations. This research would need to be carefully designed to encourage and enable access for these individuals. Additionally, given that the stated focus of the study was to gather information for more autism-friendly post-secondary opportunities, it is possible the individuals who chose to participate are more involved in neurodiversity, and thus are commenting from that perspective. However, this study is the largest national sample of autistic individuals on the topic of post-secondary opportunities. While more research needs to be done, the number of participants and geographic range is notable.
Developing better strategies to improve employment outcomes for autistic adults is increasingly critical as this population enters the workforce at rising numbers. Additionally, some companies have recognized the benefits of hiring autistic adults and have initiated specific programs aimed at hiring more autistic individuals. Despite these positive trends, it is clear the misinformed attitudes about autism are presenting distinct challenges for autistic adults in successfully navigating interviews that involve particular social skill sets and comfortably integrating into a workplace environment. Although there are programs to teach autistic adults skills to improve their outcomes in these areas, programs built from the perspective of the autism community—a perspective that aims to develop more inclusive, accessible, and tolerant environments—will have benefits beyond the acquisition and maintenance of employment for one individual.
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|Diagnosis||Percentage of Participants|
|Autism Spectrum Disorder (ASD)||47%|
|Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS)||3%|
|Age at Diagnosis||Percentage of Participants|
|22+ years old||22%|
|19-21 years old||11%|
|11-18 years old||15%|
|4-10 years old||16%|
|Before 3 years old||2%|
|Top 3 Comorbidities||Percentage of Participants|
Table description: This table has two columns and three sections. The first section has a column on the left that lists the diagnoses participants reported receiving. They are Autism Spectrum Disorder, Asperger Syndrome, Self-diagnosed, Pervasive Developmental Disorder-Not Otherwise Specified, and None Indicated. The column on the right lists the percentage of participants who reported that diagnosis, 47%, 27%, 13%, 3%, and 10%. The next section has a column on the left that lists the age at which participants received their primary diagnosis. They are 22 and older, 19-21, 11-18, 4-10, and before 3. The column on the right lists the percentage of participants who reported that age at diagnosis, 22%, 11%, 15%, 16%, and 2%. The final and third section has a column on the left that lists the top three comorbidities reported by participants. They are anxiety, depression, and ADD/ADHD. The column on the right lists the percentage of participants who reported that comorbidity, 57%, 39%, 36%.
|Employment Status||Percentage of Participants|
|Looking for employment||13%|
|Other status (i.e., student, stay at home parent)||15%|
|Job Field (Top 6 in Employment History)||Percentage of Participants|
Table description: This table has two columns and two sections. The first section has a column on the left that lists employment status. They are full-time employment, part-time employment, self-employed, looking for employment, other status, and receiving SSI. The column on the right lists the percentage of participants who reported that employment status, 31%, 32%, 3%, 13%, 15%, and 13%. The next section has a column on the left that lists the top 6 job fields reported in participants' employment history. They are retail/sales, internships, nonprofit, customer care, contract work, and administration. The column on the right lists the percentage of participants who reported that profession, 44%, 28%, 28%, 25%, 20%, and 20%.