- Advantages of Disclosure
- Disadvantages of Disclosure
- Lived experience of Disclosure
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Deciding whether to disclose is a sensitive part of identity management with many questions to consider.
Fears may include perception by others post-disclosure, access to support, and concerns around wellbeing.
‘The only formula that I tell people is, you better be right about when and when not to disclose’
Mr. Carley, in (Diament, 2005, pp. 10-11)
About the author
Holly Bainbridge is a research student at Bath University in the United Kingdom and neurodiversity writer. She is passionate about using science communication to promote awareness, acceptance and appreciation of neurodiversity.
The neurodiversity movement celebrates the strengths and capabilities of individuals with autism, dyspraxia, ADHD and dyslexia / dyscalculia (Kapp, Gillespie-Lynch, Sherman & Hutman, 2013). It conceptualizes these conditions as alternative ways of thinking and inseparable from personal identity, rather than neurological deficits requiring ‘cures’ as a medical model would suggest. The acceptance of neurodiversity principles in education and employment has increased over the past few decades. This has made it easier for autistic people to be open about their condition in these environments without the same risk of discrimination or stigmatisation, compared to many years ago.
Sadly, autistic people across the globe are struggling to reach employment despite being enthusiastic, qualified and able. The proportions of autistic people gaining employment has steadily increased over the past twenty years (from 15%-63%), although these figures are still much lower than the increases in employment seen for other ‘disability’ groups during the same time (54%-91%) and compared to the general population (Newman et al., 2010, 2011; Sanderson et al., 2011). Therefore, despite worldwide attitudinal shifts towards diversity and inclusivity in employment, it is clear there are still difficulties involved in gaining and maintaining jobs for autistic people.
“Unlike other ‘visible disability’ groups, those with ‘hidden’ disabilities have the choice to conceal or reveal their diagnoses.”
One major issue which is receiving greater attention within research is the disclosure of a diagnosis of autism by an individual. This is important. Unlike an individual with a ‘visible disability’, who may have no choice over disclosing their condition because it’s readily identifiable, an individual with a less visible condition (for example autism) has to make an active decision as regards ‘revealing’ their diagnosis to others or ‘concealing’ it, each of which may have important consequences (Clair et al., 2005).
The purpose of this article is to provide some of the key advantages and disadvantages of each side of the coin; one side about ‘revealing’ an autism diagnosis at work and the other side about ‘concealing’ it. The stated advantages and disadvantages are based on the lived experiences of disclosure by autistic people, as well as experimental evidence.
Advantages of Disclosure
Autistic people may wonder if disclosing to their employer may help increase their chances of getting and keeping a job. In a study of 254 American autistic adults, Ohl et al. (2017) reported that those who disclosed their condition to their employers were over three-times more likely to be currently employed in a range of sectors compared to those who did not disclose. Although this survey did not investigate the various potential reasons for this higher rate, it may be that disclosing autism to a supervisor or group of colleagues opens up mutual understanding or helps build a social bond. The bond may make autistic people feel more included in the workplace and therefore more motivated to stay there (Scott, Falkmer, Girdler & Falkmer, 2015).
“Employees who disclosed their condition to their employers were over three-times more likely to keep their jobs compared to those who did not disclose…”
A recent review of several studies about disclosure from seven different countries reported that disclosure can afford autistic people alterations to the interview process, which may increase the chances of obtaining employment in the first place. Additionally, it may open doors to accommodations while in employment, such as flexibility in work hours and job tasks, options to work from home and alterations to work conditions including a quieter office or customized lighting to ease sensory loads (Lindsay et al., 2019). These factors may work to increase job performance, which in turn may foster self-efficacy and psychological wellbeing, which has been found to increase job productivity and the likelihood of choosing to stay in a job (Sears et al., 2013).
Disclosure is beneficial in workplaces as it can increase access to support and accommodations, and it also positively impacts others’ first impressions. Recently, Sasson and Morrison (2019) undertook research to explore likeability with respects to labels. They presented a group of people without autism a series of videos which included autistic and non-autistic people talking about themselves. Those featured in the videos were either correctly labelled as autistic or not, incorrectly labelled as autistic or not, or did not have a label at all. Observers were then asked to rate each video participant on various criteria, including likeability, trustworthiness, and intelligence as well as how willing they would be to socially engage with them, start a conversation with them and ‘hang out’ with them.
“…autistic participants received many more positive evaluations on all metrics when they were correctly labelled as autistic.”
Results revealed that when no labels were provided to identify people in the videos as being autistic, those individuals received substantially fewer positive evaluations compared to neurotypical participants. However, autistic participants received many more positive evaluations on all metrics when they were correctly labelled as autistic. These findings show that ‘revealing’ an autism diagnosis means that others’ first impressions may become more positive compared to when a diagnosis is ‘concealed’. This could be due to the knowledge of a person’s autism status providing an acceptable and valid explanation for any ‘odd’ or ‘antisocial’ behaviours, such as refraining from eye contact or fiddling with a piece of Lego which may otherwise have been attributed to unfriendliness (Chambres et al., 2008).
Disadvantages of Disclosure
Although society’s awareness of neurodiversity has grown and research has shown positive results related to awareness about autism, disclosing a diagnosis can be challenging. As worded beautifully by Knopp (2004), public disclosure of a sensitive part of your identity is part of a “highly contingent and contextualised process.” (p.125). This means, whether you choose to disclose or not, how you do it, when, and who to, will vary based on your experience in the world. Your decision ought to be your own, and can depend on your place of employment, the kinds of people you work with and your own ideas on how to best approach the subject.
“A fear of stigma is given as a primary reason why autistic people choose to conceal their diagnosis at work.”
The disclosure of autism can alter both how others view the person who disclosed, but also how the people who disclose come to view themselves, which is referred to as the ‘stigma threat’ (Johnson and Joshi, 2016). The fact that many individuals on the spectrum outwardly struggle with affective and social skills means they constitute a group at risk for being subjected to negative stereotypes by others. The journalist Michelle Diament (2005) reported on her own experiences of meeting employed autistic adults and noted that many autistic academics choose to conceal their diagnosis for fear of being pitied or viewed as less capable, particularly if their employers and colleagues have limited awareness of autism. Therefore, situations in the real-world involving disclosure are often much more complicated and involve further issues that may not always be represented or addressed within the research which is often simplified in design (e.g. Sasson & Morrison, 2019).
‘Stigma theorists’ argue that the experience of identifying with a potentially stigmatised group (e.g. through disclosure of autism) can alter how individuals view themselves, and this can impact their quality of life, particularly if the group is associated with those negative stereotypes (Rüsch, Corrigan, Todd & Bodenhausen, 2010). Therefore, many autistic people choose to conceal their diagnosis at work, to manage the social demands imposed by their job and to protect themselves from discrimination, ‘us and them’ politics (Runswick-Cole et al., 2014), and any low self-esteem which may follow. This is likely to be particularly important in highly social work environments, such as shared offices and project teams. Indeed, the scoping review by Lindsay et al. (2019) identified ‘fear of stigma’ as a primary reason why employed autistic people choose to conceal. Similarly, students completing an autism-specific industrial work placement, during which they were explicitly identified as autistic, voiced similar concerns when interviewed by Remington and Pellicano (2019), noting in particular the concern that knowledge of their condition may lead managers to underestimate their abilities.
As public awareness of neurodiversity spreads, the historical negative stereotypes around autism (e.g. being impolite, strange or antisocial) are becoming less prevalent.
With the rise of neurodiversity as an advantage at work, a growing number of companies (for example JP Morgan, Deutsche Bank, Auticon) are developing programs to facilitate employment for autistic people. A recent study that gathered information from 59 managers at small and large businesses around Australia reported an overwhelmingly positive impact of employing autistic people (Scott et al., 2017). The autistic employees were reported to perform at above-average levels in tasks involving systematic information processing and attention to detail and they were valued for their contribution to promoting inclusion within the business. The majority of employers reported they would recommend employing such individuals to associates.
It may be worth concealing an autism diagnosis in environments where there is A) a high social demand, such as working in a large team, and/or B) limited awareness and potentially negative / misinformed conceptions of autism. In such cases, disclosure may encourage stigmatisation and undermine self-esteem.
However, in workplaces where A) cultures of inclusiveness / neurodiversity are actively endorsed, and/or B) specific support programs / employment initiatives are in place for individuals with autism, concealing may be more effortful and lead to more negative consequences, than revealing.
It is valuable to assess the environment before making your decision regarding disclosure.
A Double-Edged Sword?
Disclosure is like a double-edged sword; it has both favourable and unfavourable consequences. As echoed in the quote by Mr. Carley at the beginning of this article, choosing to reveal or choosing to conceal a diagnosis may involve a degree of strategy which will likely vary by context.
Decisions such as selecting which colleagues to disclose to, picking out the appropriate moments in conversations for disclosure, and managing how your behaviour is perceived by others are all difficult to navigate and the answers are not always clear-cut. There are important issues to consider on both sides.
Advantages of disclosure:
- Increased chance of securing employment;
- Access to workplace accommodations;
- Increased job performance and self-esteem;
- More favourable first impressions on others.
Disdvantages of disclosure:
- Potential dampening of quality of life if negative stereotypes are present;
- Stigma threat: possibility of inducing stereotyped views in others if they are unaware of autism;
- May introduce ‘us and them’ politics and foster social exclusion in highly social roles;
- ‘Choosing the right moment’ is socially challenging, meaning in some situations it is easier not to disclose.
Importantly, the final decision about whether to disclose should always lie with the individual. You need to make the choice that is best for you.
To help towards this please find overleaf some personal statements from employees with autism living in the UK and Australia about their own experiences and issues of disclosure at work…
Lived experience of Disclosure
“When I disclose that I’m autistic it’s generally not seen as a big deal, which it shouldn’t be, but it can also mean nothing is being done…”
‘Knowing when, how, and what to disclose is never easy. My first job I didn’t disclose at all. I just tried to manage, even though the tasks I was given left me emotionally, socially, and physically exhausted, and tasks that others were doing wouldn’t have. When applying for jobs there’s rarely a specific place to disclose, which makes things difficult. Now I try to disclose that I’m autistic in my CV or cover letter when applying for a job. I do sometimes worry that disclosing will impact my chances, even though that’s illegal. I remind myself a lot that the people who would do that aren’t people I would want to work for. It’s difficult and I still don’t disclose all my other diagnoses at least until after I’ve gotten the job. When I disclose that I’m autistic it’s generally not seen as a big deal, which it shouldn’t be, but it can also mean nothing is being done. Often the people who need to know aren’t told and, if something happens, I find that I have to disclose again to the manager of the day to explain. In my current job I disclosed prior to the interview, adaptations were made for everyone applying for the job and disclosing once I had the job was easy too. Though there are still issues sometimes, it’s a lot easier to talk about and find solutions when working with people who know and who understand.’(Female, 20s, Autism)
‘I came out December 2018 and that was just to my two direct team leaders. They were cool. It was a non-event. We’d been working together for over a year. They didn’t ask me for info on autism. It didn’t trigger any process, which I think it should have. A process on managers being required to do some basic training [on autism] would have been good.
A few months later I got the flu and [had] a week off sick. When I got back a team leader all of a sudden requested a meeting and said they needed me to give a letter advising of supports I needed. It freaked me out. My team leader somehow thought the flu was autism related! It made me really uncomfortable. I said I was just sick and [didn’t] need autism supports.
Then jump to July 2019. New team leader hired. Both old ones left. This new one was a first-time team leader [without any management experience]. Now, all of my normal autistic traits were received as me being “a troublemaker” or “a problem”. I do not think I am a problem. I solve problems! I just ask the hard questions. I point out logic flaws. I point out when team leader is wrong. I’m polite. Not grumpy. Just say, ‘sorry but you’ve got that wrong’, and it’s [not accepted]. Or me trying to problem solve (which is my passion), and I was told to stop and focus on basic tasks. I also feel micromanaged now. I can’t know for sure, but it felt like [my team leader] thought I had an intellectual disability, and that escalated everything in a huge blow-up at work. I had to sit through a review to maybe fired! I didn’t lose my job, but I also should not have had to defend myself as if I’m some ‘[person] with autism who can’t follow instructions’ either.
I really think businesses need processes for when autistic people come out. Like a course on managing autistic people, or what the spectrum encompasses and what it doesn’t.’(Female, 40s; Autism & Anxiety Disorder)
‘My diagnosis has always been an open book. I was diagnosed as a child and my parents always told everyone, and so I just thought that was the done thing. I had a few problems with only being given menial work like mopping floors and unpacking stock when I first disclosed at work, and some horrible people teased me, but my boss was quick to tell them off. Over time I have shown my boss and my peers that I am a force to be reckoned with! I am a great shop clerk and I work hard. I get lots of shifts now and have made a few friends too’.
“My boss and everyone at my workplace were unbelievably supportive and friendly and kind and willing to make accommodations for me. Disclosure did not hinder my upward movement in the organisation; it almost seemed to help me…”(Male, 30s; Autism & Dyslexia)
‘For me in the past, I always came up against problems at work, with me being described as having a personality clash with supervisors or being a ‘smarty pants’ or ‘trying to take over’. Maybe I was hot-headed as a young person, but I was also autistic. Just the thing is—back then, I didn’t know I was on the spectrum.
I got diagnosed as an adult; actually a few years ago.
When I was diagnosed, I told my university first and that did not at all go to plan. I was vilified, stereotyped and bullied by a number of lecturers. I was marked down in my work, because I ‘do not understand language’ and ‘have difficulties with abstract thought’. And that felt like a kick in the teeth because before I told them, they loved my work and was an A-student. I ended up finishing my degree, but it was at the cost of my mental health.
I was unemployed for a long time, but when I did land my first real job, I actually told them. I decided to be upfront and honest, and I just gave the organization and my immediate manager my diagnosis report (you know, the one with all your test results and the psychologist’s reflection of all your trauma). My boss and everyone at my workplace were unbelievably supportive and friendly and kind and willing to make accommodations for me. Disclosure did not hinder my upward movement in the organisation; it almost seemed to help me as they often talked about the strengths-approach and how autistic minds think differently.
My manager said something like, ‘I love your fresh ideas; this place can get so terribly stagnant’ and that made me feel really valued.
I also take a lot of mentorship under the wing of my manager. Even though I am new to my seniority at work, I have a lot of experience doing the work, so I’m talented at my job – it’s the processes of the organization that I’m getting mentored with.
I think what made it good for me was that my organization understands autism. And, in contrast, my university (largely) did not. I think what maybe made the biggest difference though, was that when I told my workplace, I gave them the official report. When I told my university, I just verbally shared “I’m autistic” to my lecturers.
If you slap someone in charge with an official bit of paper that itemizes your diagnosis through all the difficulties, your strengths, your resilient nature through trauma, and your IQ (as the report does), then they can’t assume and be idiots to you. They have to respect that a PhD-qualified psychologist wrote that, you know? And then their respect and admiration from reading it, maybe trickles down into you, as a person.’(Female, 30s; Autism & Depression)
‘Am I out at work? Oh no, I’m not. In some ways it makes me feel like an imposter, but in other ways I should be okay with it because I was only diagnosed after I got the job [many years ago].
I do think, however, that my boss and colleagues know because I often overhear them talking about me as being, ‘maybe Aspergers’ or ‘a bit strange’. I don’t think they knew I could hear their whispers though.
Yet, it does not restrict me; even their gossip about me. I don’t think they would fire me if I told them – only if I had poor performance or did something really bad I guess. Plus. It seems to help me in my job and I often get given intricate or complex tasks to solve, things that others in the team cannot figure out. I also have started a few initiatives that have helped my team a lot.
Maybe I should tell them? I don’t know.’(Male, 50s; Autism, Depression, Anxiety Disorder and high IQ)
“It seems to help me in my job and I often get given intricate or complex tasks to solve, things that others in the team cannot figure out.”
Disclosure is ultimately your personal decision.
Weigh up the pros and the cons in your own situation and make a choice you feel comfortable with.
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