Abstract
Research consistently documents the negative postsecondary outcomes of autistic individuals. Identifying facilitators and barriers to obtaining and maintaining employment is imperative to improve postsecondary outcomes. Autism diagnosis disclosure at work may serve as a facilitator or barrier to obtaining and maintaining employment, but little is known about the lived experiences of individuals on the spectrum regarding diagnosis disclosure at work. To ascertain why autistic individuals choose to pursue disclosure or choose not to disclose at work, how they disclose, and the consequences of that disclosure, a state-of-the-art literature review was conducted. Ten studies met the final inclusion criteria and were synthesized to provide guidance to autistic individuals, families, and professionals who support autistic individuals’ transition to employment.
Lay abstract
Research consistently documents the poor postsecondary outcomes of autistic individuals. It is important to identify supports that help autistic individuals get and keep jobs to improve postsecondary outcomes. Autism diagnosis disclosure at work may serve as a support (e.g., receiving accommodations) or as a barrier (e.g., discrimination) to getting and keeping employment, but little is known about the lived experiences of autistic individuals on diagnosis disclosure at work. To better understand why individuals on the spectrum choose to pursue disclosure or choose not to disclose at work, how they disclose, and the consequences of that disclosure, a state-of-the-art literature review was conducted. Ten studies met the final inclusion criteria and were synthesized to provide guidance to autistic individuals, families, and professionals who support their transition to employment. Findings from the review indicate that diagnosis disclosure is a highly complex decision. Across reviewed studies, participants chose to pursue disclosure for specific reasons, including access to accommodations or support, increase understanding, and advocate for self or others. Autistic individuals participating across reviewed studies shared they chose not to disclose primarily due to fears of discrimination and experience of stigma. Both the hopes (access to accommodations and supports) and fears (bullying and discrimination) were validated in the experienced consequences of disclosure. More research is needed on the contextual experiences of how individuals on the spectrum disclose their diagnosis at work.
The transition out of high school into the adult world is difficult for many young adults, especially those with autism spectrum disorder (ASD). In fact, autistic individuals experience increased vulnerability during the transition out of high school (Taylor & Seltzer, 2010). Further, research indicates approximately 50% of autistic adults are not employed or enrolled in postsecondary education in the first two years after high school (Shattuck et al., 2012). When compared to peers with other disabilities, young adults on the spectrum are less likely to be employed and earn less money (Roux et al., 2013).
Autistic individuals have the ability and desire to work but experience obstacles in obtaining and maintaining employment due to challenges related to their autism (Hendricks, 2010). For example, difficulties with social interactions and communication can make navigating the interview difficult. Most people on the spectrum cannot successfully move past the interview process (Stankova & Trajkovski, 2010). They may wear atypical attire, avoid eye contact, or have difficulty engaging in casual conversation. These non-job-specific cues may bias interviewers. Even if an autistic individual can obtain employment, maintaining employment can be challenging. They may have difficulty adjusting to job routines, struggle with time management, have difficulty completing multi-step tasks, and/or struggle to develop relationships with colleagues (Waisman-Nitzan et al., 2019). This is unfortunate because individuals on the spectrum frequently make valuable employees as they are often reliable, efficient, honest, and rule-followers (Stankova & Trajkovski, 2010). Further, in some cases, an individual on the spectrum may have exceptional isolated skills that can align very well with a particular job (e.g., computer expertise).
Identifying skills that result in improved postsecondary employment for autistic adults and targeting those skills for intervention in transition plans has the potential to positively impact postsecondary outcomes (Hume et al., 2018). But those skills first need to be identified. One domain that could serve as a facilitator to obtaining and maintaining employment is disclosing one’s autism diagnosis at work (T. D. Johnson & Joshi, 2016).
When autistic individuals disclose their diagnosis it explains atypical behavior that can be attributed to the diagnosis which may elicit more positive responses from others, known as attribution theory (Weiner, 1974). Research indicates ASD diagnosis disclosure among peer groups confers positive outcomes including improved cognitive and behavioral attitudes from peers, and more positive social intentions from peers (e.g., Sreckovic et al., 2019). Disclosing could also serve as a protective factor as individuals with disabilities are afforded protection from discrimination under federal law (e.g., Americans with Disabilities Act, 1990). Further, disclosing may allow supervisors or colleagues to make accommodations to better help an autistic individual perform their job (Lindsay et al., 2021). While there are perceived benefits of disclosure, there is concern that disclosure could serve as a barrier to employment as social and psychological costs may be associated with expressing one’s diagnosis (T. D. Johnson & Joshi, 2016). Namely, lack of information about autism among employers may lead to stereotyping, stigma, and discrimination.
Individuals on the spectrum are fraught with the decision of whether they should disclose their diagnosis in work settings (Murray, 2006). Research is needed to help autistic individuals make educated decisions on if they should disclose and when/how to disclose. The decision to disclose is significant. Once an individual discloses the individual cannot reverse that disclosure within that setting. The content of the disclosure matters and should be well thought out (Brouwers et al., 2020). Why individuals disclose, how they disclose, and the experiences of that disclosure are needed information to provide guidance for transition plans to better prepare adolescents and young adults on the spectrum to obtain and maintain employment and improve postsecondary outcomes.
Purpose
A recent review of the literature examined ASD diagnosis disclosure at work and outlined the benefits, limitations, and factors affecting disclosure as well as workplace accommodations (Lindsay et al., 2021). The current literature review is a state-of-the-art review (Grant & Booth, 2009) and extends the work conducted by Lindsay et al. (2021) by focusing more qualitatively on the experiences of disclosure from the perceptions of autistic individuals, and factors that impact the decision to disclose. Although examining the perspectives from multiple stakeholder groups (e.g., employers) is important, the authors of this review aimed to illuminate the experiences of autistic individuals themselves to get a better understanding of why some choose to pursue disclosure and others choose not to disclose their diagnosis, and consequences associated with the decision to disclose. These decisions are highly complex; therefore, having more contextual information on actual experiences is needed.
For this study, the authors aimed to review and describe all studies in the extant literature that examined ASD diagnosis disclosure in workplace settings (i.e., during interviews, on the job), with supervisors, hiring managers, or coworkers, from the perspective of autistic individuals. The purpose was to better understand the contextual experiences of autistic individuals, namely, why they choose to disclose/not disclose, how they disclose, and the positive and negative consequences of disclosure. This information is synthesized to provide guidance to autistic individuals who may be considering sharing diagnosis information in workplace settings and to provide guidance to family members, teachers, researchers, and clinicians who support individuals on the spectrum as they transition to workplace settings. Identity-first language or “on the spectrum” is used throughout this manuscript to respect the autistic community and a movement toward identity-first language and away from potentially ableist terms (Bottema-Beutel et al., 2021).
Method
Inclusion criteria
To be included in this state-of-the-art literature review, the article (a) needed to be a qualitative or quantitative study; (b) needed to include participants on the spectrum; (c) addressed ASD diagnosis disclosure in a workplace setting (i.e., interview, on the job) either as a research objective or found during the results of the study from the perspective of autistic individuals; (d) be published in a peer-reviewed journal; and (e) be written in English. Intervention studies were not included in this review as the purpose was to better understand experiences of ASD diagnosis disclosure in the workplace and the context and consequences associated with disclosure. If an article included aggregated data for participants with different diagnoses and the autistic participants did not represent the majority (i.e., Brouwers et al., 2020; Reavley et al., 2017; survey study in Morris et al., 2015; Toth & Dewa, 2014), the studies were excluded from the review because it was not possible to determine which data related to autistic participants. Research indicates people’s perceptions vary based on disorder (e.g., Bogart et al., 2019), and the authors did not want to overgeneralize the findings. We did not limit the findings to select publication dates.
Identifying articles
To identify a comprehensive list of peer-reviewed, published literature on ASD diagnosis disclosure at work, the first author conducted a search of psychology and education databases using the following search terms: (a) autism or Asperger* (in any field) AND job or employ* or workplace (in abstract) AND disclos* OR perception OR attitude OR belief OR opinion (in abstract). The search yielded 201 articles after duplicates were removed. The first and fourth authors read the title and abstracts of all 201 articles independently to determine if the article should be pulled and read in its entirety to determine inclusion in this review. The authors coded a “1” if the article met the inclusion criteria below, a “0” if it did not meet all the inclusion criteria, or a “1” if more information was needed to determine if the article met the inclusion criteria. Any article that was coded “1” by either author was pulled and read in its entirety to determine if it met inclusion criteria. The title and abstract coding for the initial search yielded a 95% agreement among the first and fourth authors. After the initial coding, 27 articles were pulled and read in their entirety to determine if they met the inclusion criteria Figure 1.
Preferred reporting items for systematic reviews and meta-analyses (PRISMA) diagram of the article selection process.
This search procedure was replicated prior to submitting this review for publication to identify any recently published articles. The second search yielded 59 articles after duplicates were removed. The title and abstract coding yielded an 85% agreement among the first and fourth authors. Fifteen of the 59 articles screened in the second search were read in full.
Ancestral searches were conducted of all articles read in full (i.e., the reference lists of all articles read in full were examined to determine if any referenced article should be considered for inclusion in this review) and other reviews related to workplace disclosure (i.e., Lindsay et al., 2021). Three articles were identified through the ancestral search as possibly meeting inclusion criteria and were pulled and read in full. After the article screening protocols listed above, the first and second authors came to a consensus of the final articles that met inclusion for this review.
Ten articles met the inclusion criteria and were included in the review. Articles were excluded in this review for several reasons including not including the perspectives of autistic individuals (e.g., only including the perspective of employers), not related to diagnosis disclosure, not related to employment/the workplace, and not being a qualitative or quantitative study.
Data extraction and synthesis
A narrative synthesis approach was used to synthesize the articles (Rodgers et al., 2009). To extract the data, the first author pulled all data related to study characteristics and data from all included articles related to the research questions and tabulated them in a table. Because the purpose of this review was to better understand diagnosis disclosure from the perceptions of individuals on the spectrum, if a study included autistic participants and other stakeholders (e.g., employers; Buckley et al., 2021), data were only extracted from autistic participants. For reliability, the second author confirmed data pulled from the included articles were relevant and accurate.
The data were first organized individually by article. The authors examined the data within each study related to the decision to pursue disclosure or not to disclose, the context of disclosure, and the consequences of disclosure. Then, the authors analyzed the data across articles within each research question, to explore the relationship between the articles. To translate the data, themes were identified using an iterative process. The first and second authors read the data multiple times and noted patterns, met to discuss ideas, went back to the data, and then finally came to a consensus on the final themes present across each research question (i.e., Why do autistic individuals choose to pursue disclosure or choose not to disclose at the workplace? How do autistic individuals disclose their ASD diagnosis at work? What are the consequences of ASD disclosure at work?).
Reflexivity statement
The authors of this review are former practitioners (i.e., educators and clinicians). They all have firsthand experience of the children and adolescents they served disclosing their ASD diagnosis in educational settings. They have witnessed both positive and negative outcomes of disclosure, but more frequently positive outcomes associated with disclosure. As the authors approached this review, they attended to these assumptions that diagnosis disclosure would confer more positive outcomes in the workplace, similar to what they observed in educational settings. They attended to this bias throughout the analysis.
Community involvement
Members of the autism community were not involved in the design, analysis, or interpretation of this review.
Results
The ten articles in this review included 825 participants with autism, Asperger Syndrome, PDD-NOS, or ASD. Participants in several studies had comorbid diagnoses (e.g., three participants in Buckley et al., 2021 also had an intellectual disability). Of the studies that reported specific age, participants’ age ranged from 18 to 70 years. Only a few studies reported participant race and/or ethnicity. See Table 1 for the study characteristics of the included articles.
Characteristics of included articles.
Disclosure status was only reported if the number of participants who chose to disclose/not to disclose was explicitly stated in the study.
AS: Asperger syndrome; ADHD: attention deficit hyperactivity disorder; NR: not reported; ASD: autism spectrum disorder; PDD-NOS: pervasive developmental disorder-not otherwise specified; LD: learning disability.
The overarching themes from the data suggest autistic individuals choose to pursue disclosure in an attempt to receive accommodations or support in the workplace and/or to advocate for themselves and others on the spectrum. Data suggest that autistic individuals who choose not to disclose their autism diagnosis made that decision in fear of experiencing discrimination and/or fear of experiencing stigma. Unfortunately, not enough data were present in the extant literature to describe how autistic individuals disclosed their diagnosis (e.g., during the interview, with a supervisor, the content of the disclosure). Data from this review suggest autistic individuals who disclosed experienced both positive and negative consequences once they disclosed (i.e., receiving accommodations/support; experiencing stigma/bullying). The synthesis of findings from this review is summarized below by research question.
Research question 1: why do autistic individuals choose to pursue disclosure or choose not to disclose their autism diagnosis in the workplace?
Findings from eight articles revealed participants had specific reasons for pursuing disclosure or not disclosing in work settings. They are described below.
Reasons to pursue disclosure
Participants in seven articles discussed reasons to pursue disclosure in the workplace. Across these studies, two patterns emerged as reasons to pursue disclosure: (a) to receive accommodations or support and (b) to advocate for self and/or others.
To receive accommodations or support
It was clear participants across studies felt a benefit of disclosure was to gain access to accommodations and/or support in the workplace. For example, one participant in Hurlbutt and Chalmers (2004) shared, “In this day and age, it’s best to disclose having autism. The employer will get a heads-up in case you have problems later” (p. 220). The benefit of disclosing to gain access to accommodations and support was echoed by several participants in Hurlbutt and Chalmers (2004). Participants in the study conducted by Buckley and colleagues (2021) noted that disclosure was often necessary to receive support. As one participant shared, “I’m not shy about coming forward and saying ‘I’m autistic. This is what I need’” (Buckley et al., 2021, p. 53).
Most participants in Waisman-Nitzan et al. (2021) felt disclosure opened dialogue with the employer which could then improve workplace accessibility and subsequently job performance. One participant shared,
My recommendation is to say that you have ASD and to emphasize what it means for you. If it means you can’t stand that people move things on the table, say it. If it means that you need to receive all notes written in tidy handwriting, say it. To say exactly what it is that prevents you from functioning and to make sure your needs will be addressed (p. 7).
In addition to disclosure opening the dialogue for accessibility and workplace accommodations, another benefit of disclosure shared by a participant in Krieger et al. (2012) was the legal advantages and support autistic individuals can receive if they disclose at work.
Participants in two studies (Morris et al., 2015; Sarrett, 2017) discussed a benefit of disclosing was to receive support in terms of greater empathy and understanding from colleagues and supervisors. For example, one participant in Morris et al. (2015) shared, “If people didn’t get whatever social stuff they need from me, maybe they would be more understanding and explain what they need [more clearly]” (p. 178). In this sense, disclosure would explain atypical behaviors and hopefully increase understanding and empathy.
To advocate for self and/or others
A second theme that was present across multiple articles as a reason to disclose was to advocate for oneself and to advocate for others. Most participants in Waisman-Nitzan et al. (2021) felt that disclosing their ASD diagnosis at work underpinned self-advocacy. A minority of participants in both T. D. Johnson and Joshi (2016) and Buckley et al. (2021) noted choosing to disclose to be true to themselves—to be open about all parts of their life (T. D. Johnson & Joshi, 2016) and to be “out” because they “don’t have a problem with it” (Buckley et al., 2021, p. 53).
Disclosing also provided an opportunity for autistic individuals to advocate for other autistic individuals. For example, one participant in Sarrett (2017) noted that disclosing is an opportunity to promote autism awareness and advocacy believing that the implications of disclosing extend beyond just the individual themselves. As an example of this, one participant shared, “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” (Sarrett, 2017, p. 11). Disclosing in this context may lead to a greater understanding of ASD by employers. Further, participants in Hurlbutt and Chalmers (2004) believed that it was important for employers to understand the advantages of employing an autistic individual.
Reasons not to disclose
Participants in seven articles discussed reasons they chose not to disclose their diagnosis in the workplace. Across these studies, two main patterns emerged as reasons to not disclose one’s diagnosis at work: (a) fear of experiencing discrimination and (b) fear of experiencing stigma. Although not mentioned in enough studies to be considered a theme, participants in two studies did mention a benefit of pursuing nondisclosure was to protect one’s privacy (T. D. Johnson & Joshi, 2016; Whelpley et al., 2021). In T. D. Johnson and Joshi (2016), one participant worried that disclosure violated his privacy and could allow others to monitor his behavior at work. In Whelpley et al. (2021), one participant noted autistic employees may just want the employer to know, but disclosure could lead to other people (e.g., customers, coworkers) knowing, as well. The data that fell into the two main themes are described below.
Fear of experiencing discrimination
It was clear that participants across several studies were concerned about possible discrimination if they disclosed their diagnosis at work. Some participants in Hurlbutt and Chalmers (2004) feared losing their jobs if they disclosed or not getting hired if they disclosed. For example, one participant, Daina, shared, “I wish I could disclose the information up front, but I think that it would just prevent me from being hired because people don’t know enough about it and are frightened” (Hurlbutt & Chalmers, 2004, p. 220). Some participants in Sarrett (2017) also noted choosing not to disclose for fear of discrimination, and two participants specifically mentioned fear of losing their jobs if they disclosed. Participants in Morris et al. (2015) shared being reluctant to disclose because of fear of workplace discrimination more broadly and one participant in T. D. Johnson and Joshi (2016) noted concern about indirect consequences of disclosing. Several respondents in Whelpley et al. (2021) chose not to disclose because they were concerned that disclosure could lead to perceptions of their job performance and the possibility of discrimination.
Participants also noted concern that disclosing could limit their work opportunities. For example, some participants in Buckley et al. (2021) were worried if they disclosed it would “pigeon-hole” them into “autism-specific work.” For example, one participant shared, “I don’t just want it to tie me down to just doing autism-related work, or autism-related theatre work. There is other stuff I am interested in” (Buckley et al., 2021, p. 52).
Fear of experiencing stigma
It was overwhelmingly clear participants across studies were concerned with the possibility of experiencing negative perceptions of ASD if they disclosed their diagnosis at work. Many participants specifically spoke of the lack of information people have on ASD and the common stereotypes others hold that could be applied to them if they disclosed. For example, some participants in Buckley et al. (2021) were concerned they would be judged negatively by their colleagues if they disclosed. They worried about other people’s perceptions and misconceptions of autism. This fear of stereotyping and the possible stigma that disclosing could provoke was also mentioned by most participants in T. D. Johnson and Joshi (2016). Similarly, one participant in Krieger et al. (2012), who was a psychotherapist, feared she would “lose credibility” if she disclosed (p. 151).
Many participants in Sarrett (2017) worried disclosing would result in coworkers and supervisors seeing their behavior “through an autism lens” (p. 11). Participants worried other people’s misunderstandings of autism would be applied to them. Further, several participants were concerned people would not believe they have autism because of popular media representations of autism. Fear of stigma was another reason some participants in Sarrett (2017) chose not to disclose. This was a common reason participants chose to pursue nondisclosure in Krieger et al. (2012), as well. For example, one participant in Krieger et al. (2012) shared disclosure is not beneficial if people hold negative views of autism. More specifically, he stated, “. . .I am not ashamed to talk about being an Asperger. But as long as the word ‘autistic’ is used as an insult, I don’t believe in progress after disclosure” (Krieger et al., 2012, p. 151). This concern was echoed by participants in Morris et al. (2015) who were also worried about being judged negatively as a consequence of disclosure. As one participant shared, “I think I have a lot of skills, and I would like to be judged on my skills and not have to worry about a diagnosis” (p. 176).
Research question 2: how do autistic individuals disclose their ASD diagnosis at work?
Limited data were gleaned from the included articles specifically stating the process individuals used to disclose their diagnosis or the content (i.e., what individuals said when they disclosed). Therefore, themes were not apparent. However, one study (Sarrett, 2017) reported individuals who disclosed emphasized the benefits of employing autistic individuals during their disclosure. After disclosing, they continued to emphasize the reasons their autism made them a good employee. Two studies discussed the factors that supported pursuing disclosure. In Morris et al. (2015), the participants who chose to disclose noted that a personal connection prompted the disclosure. In one instance, it was a manager who shared how his own children had been diagnosed with ASD, and in another instance, a close friendship existed with the manager. Most participants who disclosed at work in T. D. Johnson and Joshi (2016) reported they shared diagnosis-related information with people they considered to be friends or in a work environment that was more likely to have education about autism and be more accepting.
Research question 3: what are the consequences of ASD disclosure at work?
Several studies shared the outcomes of diagnosis disclosure at work. Although the experiences reported fell mainly into two themes, Receiving Accommodations or Support and Experiencing Stigma or Bullying, some notable data were extracted from the included studies that did not fit into those themes. More specifically, one study found autistic adults were more likely to be employed if they disclosed their ASD to their employer than if they did not (Ohl et al., 2017). Another study found autistic individuals who disclosed and were diagnosed earlier in life experienced greater self-esteem and lower perceived discrimination (T. D. Johnson & Joshi, 2016). The data that fell into the two main themes are described below.
Receiving accommodations or support
Some autistic individuals reported disclosure led to receiving accommodations and support from supervisors and/or coworkers. This theme was present in four articles. In one study, a manager had an autistic son himself. The employee who disclosed to that manager said he felt relieved, “[The manager] was really open about discussing any issues I might face in the position and ways that they could help make the environment more comfortable for me” (Whelpley et al., 2021, p. 291). Similarly, a participant from Hurlbutt and Chalmers (2004) noted disclosing to his employers gave him more time to learn his job. A participant in another study (Buckley et al., 2021) shared, “I’m not shy about coming forward and saying, ‘I’m autistic. This is what I need’” (p. 53). Not only did disclosure lead to accommodations at work, but it also helped colleagues be more supportive. For example, one participant shared, “They just became more understanding. I could be honest about the fact that something was a bit loud” (Buckley et al., 2021, p. 53). Other autistic individuals had similar experiences, noting that colleagues were helpful and supportive. One individual shared, “I have coworkers who are very kind and patient with me and that really helps a lot,” and another said, “I also enjoy my coworkers as they take my needs into consideration and are on the most part fairly friendly and willing to help out and lend a hand if there is something that I am not too sure about” (Whelpley et al., 2021, p. 293). Although most individuals who reported a positive experience with disclosure shared only positive outcomes, one participant reported initially receiving an accommodation, but later experiencing worse working conditions, namely getting less interesting work to do (Krieger et al., 2012).
Experiencing stigma or bullying
Another theme that emerged was experiencing stigma and/or bullying after disclosure, which was mentioned in five articles. Stigma started as early as the interview. In Whelpley et al. (2021) several people said that after they disclosed their diagnosis the interview became focused on autism as opposed to the job. One individual shared, “I had been to job interviews where they knew about my diagnosis and spent all their time focused on that and not on me as if my only feature or personality or work was my autism” (Whelpley et al., 2021, p. 289). Not only did the interview become focused on autism, but in many cases the interviewer assumed that having autism meant that the individual was less competent. One individual explained, “I just thought that when they found out that I had autism they would just judge me negatively and not give me a chance. I had had these negative interactions before with different interviews” (Whelpley et al., 2021, p. 292). Other individuals on the spectrum shared the same experience, “It was like seeing someone’s estimation of me drop like a stone. . . they go from treating me like a peer to patronizing (sic) me in the space of a heartbeat” (Whelpley et al., 2021, p. 289). Another individual reported during an interview that the hiring manager “rejected me based on only my disability” and they “didn’t accept that I am capable” (Whelpley et al., 2021, p. 292). As another example, a participant shared, “I was reluctant to disclose. And as expected, when I did, some of my direct supervisors were worried about what kind of impact my condition would have on my work” (Whelpley et al., 2021, p. 289). Although some workplaces may have been open to hiring an individual with autism, the underlying assumption that the individual was less competent was still evident. One individual highlighted this, “I was offended that they assumed all autistic individuals need accommodations . . . they were quite ignorant” (Whelpley et al., 2021, p. 289).
Once hired, individuals on the spectrum did not experience the support they had hoped for. For example, one autistic adult shared,
My psychologist convinced my employer to reduce my weekly workload from five to four days a week. But since then, my working conditions have worsened. I get less interesting work to do, which in fact makes work more boring than before (Krieger et al., 2012, p. 151).
So for this individual disclosure did not help improve their work situation. Similarly, a participant in Waisman-Nitzan et al. (2021) shared his supervisor assigned him jobs that did not utilize his abilities due to a lack of information about ASD and stereotyping. Another individual shared that after they disclosed to their manager, the manager “hesitated to give me the job,” (meaning specific work projects), and the manager would “look for the symptoms” in the individual’s work (Whelpley et al., 2021, p. 293). Others shared how their competence was questioned. One individual recalled her manager, “turned a bit of a cold shoulder to me because of my autism, thinking that I am not capable of performing my job as well.” Another noted their manager
never outwardly expressed it, but I feel like he didn’t have a whole lot of faith in me because I am autistic. He would just never give me any chances to really prove myself and always seemed to take it far too easy on me (Whelpley et al., 2021, p. 293).
One autistic individual said, “people could and often [do] jump to conclusions” and that his manager told him he should consider finding a new job (Morris et al., 2015, p. 176).
In some situations, people in the workplace made condescending comments to individuals with autism. For example, one autistic individual shared that their program director said, “I think it’s so great that people like you can do this. . .” (Sarrett, 2017, p. 11). In another situation, an autistic individual explained,
People always tell me, ‘but we’re all a bit on the spectrum.’ This is really annoying. No! Because you, you have it, but it doesn’t limit you in the workplace. You can function. With me, it affects my function, which is why it’s a disability (Waisman-Nitzan et al., 2021, p. 7).
Minimizing autistic persons’ diagnoses supported the notion that colleagues and employers did not really understand what autism meant or how it could vary between individuals with autism.
Some autistic individuals described experiences of being outright bullied by coworkers (Whelpley et al., 2021). For example, one participant shared, “There are some (coworkers) others who enjoyed humiliating us behind our back and making us soft (sic) target for their enjoyment.” Another participant had similar experiences with people reacting negatively and making judgments once they found out the individual was autistic (Whelpley et al., 2021). Still, another said that a coworker was “a bit ignorant about my condition and felt the need to be a bully and make fun of my condition” (Whelpley et al., 2021, p. 294).
Because of these experiences some individuals changed their disclosure behavior moving forward. For example, one individual stopped disclosing, “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” (Sarrett, 2017, p. 11). Another participant used to disclose to be “an outspoken advocate and activist around autism” but has come to “fear people’s preconceived biases.” This participant explains,
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 someday I will feel safe to come out. . . (Sarrett, 2017, p. 11).
Discussion
This review of literature on disclosure of autism found individuals chose to pursue disclosure for specific reasons, including access to accommodations or support, increase understanding, and advocate for self or others. The literature reviewed did not overall specify how people disclosed. Only one study (Sarrett, 2017) noted autistic people disclosed by pairing disclosure with ways in which their autism was an asset to their employment. Understanding the complete pathways by which employees choose to “come out” through various processes (e.g., email, formal request, informal discussion), timeframes (e.g., during interview, at point of negative feedback from the employer, while struggling to navigate social relationships with coworkers), and people (e.g., direct supervisor, human resources, coworker) and what kind of outcomes were associated with those variables, would inform transition services and educational supports for high school students preparing for employment.
The autistic individuals who participated across reviewed studies shared they chose
Importantly, both these hopes (access to accommodations and supports) and fears (bullying and discrimination) were validated in the experienced consequences of disclosure. That disclosure does provide access to accommodations is critical as it suggests that resources and interventions meant to support autistic individuals in determining when disclosure is worth the risks may help ensure successful employment and maintain employment. These findings are consistent with a previous review on workplace disclosure which noted benefits of disclosure included receiving accommodations, greater acceptance, and increased awareness and advocacy about autism (Lindsay et al., 2021). For a group of people who struggle to be employed (Stankova & Trajkovski, 2010) and stay employed (Roux et al., 2013), efforts to support skills to access important accommodations remain necessary. Unfortunately, the risk of discrimination, bullying, and experienced stigma remains for those who choose to “come out.” The reality of these experiences and the real risk of disclosure are alarming. These findings are consistent with other research documenting the negative consequences of autism disclosure in the workplace (e.g., Lindsay et al., 2021). Educators and others supporting the transition of youth on the spectrum must recognize the real consequences of disclosure and support families and students in the important considerations they must make throughout employment experiences. Further, employers should work to create environments that are supportive, inclusive, and do not tolerate bullying behavior.
Implications for future research and practice
The purpose of this research was to review the literature to inform transition practitioners on guidance that might be most needed for youth as they prepare to enter the workforce and to provide guidance for adults on the spectrum as they navigate the employment scene. However, the experiences of individuals on the spectrum suggest that guidance through education may be more effective provided to employers and coworkers on autism. Autistic individuals’ experiences of stigma, bullying, and workplace discrimination likely stem from a lack of information about autism. Spending time and resources on educating employers and coworkers on autism could create safer and more equitable workplace environments for people on the spectrum. Further, it is important to consider ways in which ableism in the form of individual and systemic bias may be undermining more the success of autistic employees rather than any preparation for youth to learn to adapt themselves to work environments. Research has considered the role of human resource development professionals (K. R. Johnson et al., 2020), the education and demystification of autism for employers (Buckley et al., 2021; Solomon, 2020), and systemic barriers in work environments which may inhibit effective accommodations for autistic employees (Waisman-Nitzan et al., 2019). Any effort to address bias through education and training, especially as it pertains to expectations for disclosure, should involve autistic people to ensure their lived experiences are driving the process (Sarrett, 2017). The impact and efficacy of these efforts to mitigate individual bias and organizational systems that undermine access to accommodations and undermine the success of those who choose to “come out” should be explored.
Studies reviewed did not account for differential experiences based on gender, age, ethnicity, race, socioeconomic status, nationality, or religion. Thus, this review is limited to generalization of a person on the spectrum devoid of additional dynamics associated with various intersectionalities of identity. An autistic person of color is likely to calculate the risks of disclosure differently than a person who is white. Future research should include a more diverse sample of autistic individuals to better understand the experiences of individuals on the spectrum with intersecting identities.
Further, little is shared about the context of employment across the studies reviewed—the type of organizational structure and type of employment held. These factors could impact the decision to disclose, how to disclose, and the expected consequences of disclosure. For example, in Krieger et al. (2012), the psychotherapist participating feared she would lose her credibility if she disclosed based on the type of work she conducted. Researchers should consider and describe individual participants and their complex identities, as well as the complexity of the context within which disclosure is considered.
In addition to describing employment context and employment type, future research should consider the perspectives of employers across contexts on their experience of disclosure by autistic coworkers, expectations of autistic employees to disclose, and expectations for consequences of such disclosure. Content analysis of organizational policies specific across industries to make accommodations, as well as negative consequences for those who do choose to disclose, will further inform understanding of the experiences of this underemployed population. As stated by Toth and Dewa (2014), “it is important to note that a normative stance should not be placed on disclosure; rather, the organization should drive to create an environment in which employees feel safe to disclose should they wish to do so” (p. 743). Shifting expectations from individuals to ensure they have access to appropriate supports and are free from consequences of systemic and individual bias will require a deeper understanding of employment context and employer/employee relationships, both systemic and interpersonal, related to autism disclosure.
Limitations
The current review presents several limitations that need to be acknowledged and considered when interpreting the results. First, this review was limited to studies written in English. Therefore, the findings may not generalize to non-English speaking autistic individuals. Second, limited information was available about participants across the included studies (e.g., culture, race). Therefore, it is difficult to fully understand who chose to disclose and not to disclose and what factors may influence that decision. Finally, given this is a state-of-the-art review, all articles that included autistic individuals’ perspectives and/or experiences with workplace diagnosis disclosure were included. Therefore, the scope is broad, and the findings should be interpreted with caution.
Conclusion
Across the literature reviewed, disclosure was discussed synonymously with “coming out” language (Buckley et al., 2021; Morris et al., 2015; Sarrett, 2017). One participant shared “I think to that . . . years ago, gay people didn’t feel comfortable coming out . . . people on the spectrum are not yet comfortable coming out” (Morris et al., 2015, p. 7). Autistic people who participated in the reviewed studies describe calculations of risk to disclosure in their employment due to anticipated and experienced bias and discrimination based on misconceptions and lack of knowledge of employers and coworkers despite the need for accommodations. As a legally protected, unemployed, and under-employed group, barriers to accommodations have significant consequences on acquiring and maintaining employment. Although education and transition services that prepare autistic youth to make the calculations and to carry out the process of disclosure effectively are needed, the focus on the employment organization and employers directly may be most critical.
Footnotes
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
