Introduction

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.

Method

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).

Employment Experiences

Discussion

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.