“People Might Understand Me Better”: Diagnostic Disclosure Experiences of Autistic Individuals in the Workplace

Abstract

Background:

Autistic individuals face challenges in the workplace, particularly related to social communication. Diagnostic disclosure may mitigate these challenges, but it also exposes individuals to potential discrimination. This study aimed to share the diagnostic disclosure experiences of autistic adults in the workplace to help employers better understand the process, and help other autistic individuals make an informed decision about disclosure.

Methods:

The participants in this study were 238 clinically diagnosed, U.K.-based autistic adults with employment experience. Participants completed an online survey, comprising both open-ended and closed-ended questions, that asked about their experiences of disclosure in the workplace. Specifically, questions focused on when in the employment process participants disclosed, to whom the disclosure was made, what factors were involved in the decision to disclose, and what the impacts were of this decision.

Results:

Our findings suggest that when deciding to disclose, the participants were most concerned about how this might affect the attitudes of others in the workplace. Participants most often only disclosed selectively, while over a third disclosed to everyone. Many participants chose to disclose when completing the application materials or after starting the job, but rarely in the interview process. Many also disclosed after encountering issues at work (i.e., retrospective disclosure). Just over a third of participants rated the impact of disclosing to supervisors and coworkers positively. Subsequent adjustments made were even less positively endorsed.

Conclusions:

Autistic individuals must weigh the potential benefits of disclosure against the costs. This study highlights the need for organizations, rather than autistic individuals, to take more responsibility for facilitating disclosure and improving outcomes to it. Specific recommendations include the creation of clear pathways for disclosure in workplaces, and an ongoing commitment to organization-wide autism training to reduce stigma and discrimination for autistic employees.

Lay summary

Why was this study done?

Autistic individuals face challenges in the workplace. Telling someone that you have an autism diagnosis (disclosure) might be one way of addressing these challenges (e.g., by increasing the understanding of others). However, the literature on disclosure shows mixed outcomes and rarely gives voice to autistic people.

What was the purpose of this study?

The purpose of this study was to explore the disclosure experiences of autistic job seekers and employees and gain insight into their decision-making.

What did the researchers do?

We conducted an online survey with 238 clinically diagnosed autistic adults with employment experience. Our participants answered some questions about their personal information (e.g., age) and their past work experience before completing survey questions about disclosure. We read through everyone's answers to open-ended questions and put the answers into groups, such as “Reasons to disclose” and “Reasons not to disclose.”

What were the results of the study?

When deciding whether or not to disclose, our participants were most concerned about what other people they worked with would think. Most of our participants only told some people at work about their diagnosis, and many only disclosed after issues arose in the workplace. Over a third, however, disclosed to everyone. Participants said they were most likely to disclose on the application materials or after starting a job, not during a job interview. Just over one-third said that telling their supervisors or coworkers they were autistic had a positive impact, and that the changes made by their supervisors afterward were positive. Over a third said the changes made by their coworkers were neither positive nor negative.

What do these findings add to what was already known?

This is the first large-scale U.K.-based study on the disclosure experiences of autistic adults in the workplace. Our findings suggest that autistic people focus most on what other people will think and how others will treat them if they disclose. We found that disclosure during interviews is unlikely—contrary to what previous studies focused on—and that we need to conduct research looking at disclosure in more likely scenarios.

What are potential weaknesses in the study?

Most of our participants were white and female, but in the wider autistic population that isn't the case. We had many more participants who had told people at work about their autism diagnosis than those who had not. We also could not ask any follow-up questions about our participants' experiences because the survey was online.

How will these findings help autistic adults now or in the future?

Knowing more about the experiences of autistic people can help individuals to make an informed choice about disclosing their diagnosis. This study highlights that we need to involve nonautistic employers, colleagues, and organization leaders in the disclosure process to improve autism knowledge and acceptance, and hopefully improve outcomes for autistic people.

Introduction

Employment is a desirable achievement for some autistic^* adults,^2–5 yet autistic individuals have the lowest employment rate of any disability group in the United Kingdom.⁶ Although current figures may be an underestimation (due to those who do not disclose or who are not diagnosed), the National Autistic Society⁶ estimates that only 32% of autistic adults are in any sort of paid work. When compared with 47% for other disability groups and 80% employment for the nondisabled population, these numbers reflect a crisis of unemployment for autistic adults that must be addressed. The impact of unemployment can be severe; research shows that employment not only improves quality of life for autistic adults⁷ but also encourages personal dignity, reduces social isolation, and increases cognitive performance.^4,8,9

Although every autistic person is unique, many will face obstacles throughout their employment journey, from the recruitment stage until well into their employment. For example, sensory sensitivities (e.g., sensitivity to certain types of lighting and noise) can make the workplace environment challenging.^10,11 Social communication is another area in which autistic employees experience difficulties at work.¹² Negatively perceived social communication behaviors, such as interrupting or abruptly terminating a conversation, have been linked to low job retention¹³ and workplace difficulties, particularly in interacting with colleagues.^14,15 Social communication differences also appear to impact the process of seeking employment, with autistic adults frequently reporting difficulties with social interaction during job interviews.^16–21

Research outside of employment-based settings shows that one way to mitigate social communication challenges is via diagnostic disclosure. First impressions of autistic adults, as rated by nonautistic participants, improved with disclosure and were even more favorable when the nonautistic raters had more autism knowledge.²² Teachers also more frequently chose positive behavioral supports (i.e., inclusion, choice, and participation) over punishment in a hypothetical situation when they were informed of the student's autism diagnosis.²³

The issue of disclosure, however, is intrinsically linked with that of stigma. Sadly, there remain many negative stereotypes and preconceptions associated with an “invisible” disability.²⁴ Autistic individuals may have experienced stigma surrounding their diagnosis in the past, especially while at school,²⁵ leading them to choose not to disclose based on these negative experiences. Disclosure of an autism diagnosis may even result in both positive and negative stereotyping (i.e., making generalizations about autistic individuals that may either be positive or negative, but are still harmful because they may not be true) from the same individual, making outcomes more unpredictable for autistic people.²⁶ Autistic adults who choose to disclose must therefore strike a careful balance between embracing awareness and increased understanding, and avoiding harmful stereotypes. Research from education settings confirms this conflict. A study involving 250 adolescents in a U.K. secondary school found that disclosure of an autism diagnosis had no significant effect on the stigmatizing attitudes of nonautistic peers toward socializing with an autistic peer. However, participants did tend to attribute less personal responsibility to the autistic peer for their negatively perceived behavior after the disclosure of a diagnosis.²⁷

In the workplace, the decision to disclose may be even more complex, as challenges such as social communication difficulties are compounded by the natural pressures of a work environment. Research has shown that fear of discrimination from employers and colleagues is a common reason why autistic individuals choose not to disclose their diagnosis at work.^19,28,29 Indeed, this fear of discrimination, particularly against autistic job candidates, is not unfounded. In a hypothetical situation, participants were asked to make a hiring decision about autistic and nonautistic job candidates based on video excerpts of their job interviews, where candidates either disclosed an autism diagnosis briefly or in detail, or did not disclose any diagnosis.³⁰ Across disclosure conditions, participants were over four times more likely to hire the nonautistic candidates after viewing the videos.³⁰ Similarly, Ameri et al.³¹ sent out fabricated cover letters and résumés to genuine employers: some letters included a disclosure of Asperger's syndrome, some disclosed a spinal cord injury, and some had no disclosure. The researchers found that individuals who disclosed a disability in cover letters received 26% fewer expressions of interest than those who did not disclose, with no significant difference observed between the two disability conditions.

While choosing not to disclose may seem an appealing option when faced with stigma and the threat of discrimination, it is also important to recognize the benefits of disclosure. Disclosure may result in increased understanding from coworkers, provide legal protections to autistic employees, and allow an individual to receive adjustments such as flexible working hours and changes to the physical work environment.^32,33 A systematic review confirmed that disclosure can facilitate workplace accommodations but also noted that rates of disclosure were inconsistent across studies.³⁴ The benefits of disclosure may also be seen long term; in a comparison of employed versus formerly employed autistic participants, Ohl et al.³⁵ found that participants who disclosed an autism diagnosis to their employer were more than three times as likely to still be employed as those who did not disclose. The benefits of disclosure, however, may depend on how knowledgeable the potential employer is about autism,³⁶ with employers who have more knowledge about autism more likely to want to hire autistic individuals.

At present, there is insufficient evidence to support autistic individuals in their decision-making about disclosure in the workplace. The current study aims to establish the perspectives of U.K.-based autistic job seekers and employees on the extent and experience of disclosure in workplaces—and its outcomes—with the goal of helping autistic individuals make an informed decision about disclosure.

Methods

Participants

Autistic adults (aged 18 years and older), based in the United Kingdom, took part in this study. All participants had previous or current employment experience, and reported that they had received a clinical diagnosis of autism; participants were not required to give any other evidence of a diagnosis. We chose to exclude self-diagnosed participants from this study. A formal diagnosis can be used as a means to seek legal entitlements, and we therefore predicted that those who were self-diagnosed would have different reasons for disclosing, and different outcomes when doing so. The group of self-diagnosed participants was not large enough to consider separately or make any statistically significant comparisons with the participants who were clinically diagnosed. We hope that in future research we are able to highlight the workplace experiences of those who self-identify as autistic.

We recruited participants online through the Centre for Research in Autism and Education's social media accounts and via email through the Discover Network, an online research networking platform run by U.K.-based autism research charity Autistica. A third avenue for recruitment was through Autistica's corporate partners; we reached out directly to employees working with these companies to recruit participants.

Measures

The present study used a bespoke questionnaire administered as part of a wider program of research about employment experiences: the Diverse Minds Survey. The Diverse Minds Survey is a U.K.-wide online survey created as part of the Discover Autism Research and Employment (DARE) project, funded by Autistica with the aims of widening the evidence base for research on autism and employment and improving employment for autistic individuals.

All participants in the Diverse Minds Survey completed a general section on demographic and employment data. Participants in the current study additionally completed questions administered via Qualtrics³⁷ that asked about their disclosure experiences in the workplace. The term “disclosure” was introduced to participants at the beginning of the survey, and defined as telling people at work about one's autism diagnosis. The questions in the survey were designed for participants to answer based on their most relevant disclosure experiences, regardless of whether they were experiences from past or current workplaces. We did not ask them to specify this. Items included closed-ended questions such as: “Have you ever disclosed to others in the workplace” and “at what point in your employment journey did you disclose to others in the workplace?” Four questions on the survey asked participants to rate (i.e., using a 5-point Likert scale: 1—extremely positive, 2—somewhat positive, 3—neither positive nor negative, 4—somewhat negative, and 5—extremely negative) the impact of disclosing to their supervisor, employer, or coworkers and the subsequent adjustments made for them. The last three questions in the survey were open-ended: (1) “What factors did you consider before disclosing your diagnosis,” (2) “what external supports, if any, did you have when deciding whether to disclose your diagnosis,” and (3) “what were the outcomes of disclosing your diagnosis?”

Procedure

Participants clicked on a link to the Diverse Minds Survey, which directed them to answer general questions on demographics and employment. They had the option of answering any of the seven sections of the survey, one of which was the disclosure questionnaire, that were relevant to them. The survey instructed participants who answered “no” to the question, “Have you ever disclosed to others in the workplace?” to skip the questions that did not apply to them and proceed to the open-ended questions. The disclosure questionnaire took ∼20 minutes to complete.

Ethics approval for this study was granted by the UCL Institute of Education. All participants included in this study completed and signed digital consent forms before taking part.

Data analysis

Quantitative analysis

We used IBM SPSS Statistics 26 ³⁸ to run descriptive statistics on responses to the closed-ended questions in the survey.

Qualitative analysis

We conducted content analysis³⁹ to categorize the data collected through the three open-ended questions in the survey. We then imported the text responses into NVivo. We conducted the analysis across questions through open coding (i.e., no preexisting coding framework) initially. A.M.R. then developed a framework for use in the second round of coding. Two independent researchers (A.M.R. and J.D.) coded the text responses into the following categories: reasons to disclose, reasons not to disclose, factors considered, external supports, positive outcomes, negative outcomes, and neutral outcomes. The researchers then met to discuss and refine the subcategories before coding the responses again. Finally, the researchers generated a frequency table for responses under each category and subcategory. All study authors approved the final set of categories and subcategories.

Results

Sample demographics

The main Diverse Minds Survey was open to both autistic and nonautistic individuals. Of the 482 autistic participants and 136 nonautistic participants who had completed the Diverse Minds demographic questions when the data were extracted in October 2019, 285 navigated to the section on diagnostic disclosure. We excluded nonautistic respondents who completed the disclosure section (n = 5) and self-diagnosed participants (n = 12). We chose to remove participants from the sample if they indicated that they were not comfortable talking about their disclosure experiences (n = 9), that the section was in fact not relevant to them (n = 5) (i.e., they did not have any experience of choosing whether to disclose in the workplace), or they did not respond to the question “Have you ever disclosed to others in the workplace?” (n = 16). Full demographic information for the final sample of 238 participants is shown in Table 1.

Table 1.

Participant Demographic Data (N = 238)

Variable	Category	N	%
Gender	Female (including trans women)	137	57.6
	Male (including trans men)	78	32.8
	Nonbinary	17	7.1
	Other (e.g., no sense of gender)	6	2.5
Age, years	18–25	35	14.7
	26–35	60	25.2
	36–45	55	23.1
	46–55	57	23.9
	56–65	29	12.2
	66–75	2	<1
Ethnicity	White	226	95
	Black	3	1.2
	Hispanic	1	<1
	Mixed	8	3.3
Education	Bachelor's degree	67	28.2
	Master's degree	60	25.2
	Doctorate	18	7.6
	A/AS-level (qualification at 16–18 years)	24	10.1
	GCSEs (qualification at 14–16 years)	11	4.6
	BTEC (business and technology qualification)	13	5.5
	Higher national diploma	10	4.2
	Foundation degree	6	2.5
	General national vocational qualification	2	<1
	Postgraduate certificate	11	4.6
	Postgraduate diploma	7	2.9
	No formal qualifications	4	1.7
	Other (e.g., diploma equivalent, fellowship of professional body)	5	2.1
Employment status	Employed full-time	92	38.7
	Employed part-time	42	17.6
	Self-employed	23	9.7
	Volunteer	8	3.4
	Student	15	6.3
	Formerly employed looking for work	14	5.9
	Formerly employed not looking for work	12	5
	Retired	4	1.7
	Other (e.g., apprenticeship, freelance)	28	11.8
Most common employment sectors	Education	37	15.5
	Health care	31	13
	Public sector	22	9.2
	Administration	14	5.9
	Information technology	13	5.5
	Nonprofit organization	9	3.8
	Retail	8	3.4
	Creative	8	3.4
	Engineering	8	3.4
Current or most recent level worked at	Intern or volunteer	20	8.4
	Graduate employee	32	13.4
	Midlevel employee	80	33.6
	Senior-level position	106	44.5
Size of current or most recent organization (total number of employees)	0–5	17	7.1
	6–20	21	8.8
	21–50	18	7.6
	51–100	20	8.4
	101–500	27	11.3
	501–1000	21	8.8
	1001–10,000	46	19.3
	>10,000	43	18.1
	Not applicable (e.g., self-employed, freelance)	25	10.5
Current or most recent income	<£10,000	53	22.3
	£10,000–£19,999	57	23.9
	£20,000–£29,999	53	22.3
	£30,000–£39,999	23	9.7
	£40,000–£49,999	15	6.3
	£50,000–£59,999	9	3.8
	£60,000–£79,999	6	2.5
	£80,000–£99,999	2	<1
	£100,000–£149,999	5	2.1
	Prefer not to say	14	5.9
Other diagnosed conditions^a	Mental health condition	155	65.1
	Physical health difficulty	61	25.6
	Dyspraxia	23	9.7
	ADHD	22	9.2
	Dyslexia	18	7.6
	Physical impairment	18	7.6
	Mental impairment	12	5
	PTSD	12	5
	OCD	10	4.2
	Ehlers–Danlos syndrome	7	2.9
	Tourette's syndrome	3	1.3
	Dyscalculia	2	<1
	Learning condition	2	<1
	Panic disorder	2	<1
	Prosopagnosia	2	<1
	Alexithymia	1	<.5

Participants who chose “Mental Health Conditions” were included in this category; only those who wrote in specific conditions on the survey were separated into the categories for specific mental health conditions.

A/AS, advanced level qualification; ADHD, attention deficit hyperactivity disorder; BTEC, business and technology education council qualification; GCSEs, general certificate of secondary education; OCD, obsessive-compulsive disorder; PTSD, post-traumatic stress disorder.

Quantitative results

Full quantitative results are shown in Table 2. The majority of participants had chosen to disclose to some—but not all—people at work and almost half of these said that they only disclosed their diagnosis after starting the job. A third of participants, however, said they disclosed to everyone. Over a third of participants felt that the impact of disclosing to a supervisor or coworker was positive. A third of participants viewed postdisclosure adjustments made by supervisors positively, but almost as many held neutral or negative opinions. Only a small number of participants said that the subsequent adjustments made by their coworkers were somewhat or extremely positive (see Table 2 for full breakdown of responses).

Table 2.

Participant Responses to Closed-Ended Survey Questions

Variable	n	%
Have you ever disclosed to others in the workplace?
Yes, I disclosed to everyone	83	34.9
Yes, but only to some people at work	131	55
No, I have not disclosed	24	10.1
At what point in your employment journey have you disclosed to others in the workplace?
On the application materials	56	23.5
During the interview	15	6.3
After securing the job but before starting	15	6.3
After starting the job	109	45.8
After my organization received training on autism	3	1.3
After promotion	12	5
None of these are applicable to me	28	11.8
Impact of disclosure and subsequent adjustments made
How would you rate the impact of disclosing to your employer or supervisor?
Extremely positive	33	13.9
Somewhat positive	63	26.5
Neither positive nor negative	57	23.9
Somewhat negative	34	14.3
Extremely negative	17	7.1
Not applicable (i.e., did not disclose to supervisor)	34	14.3
How would you rate subsequent adjustments made by your supervisor or employer?
Extremely positive	25	10.5
Somewhat positive	55	23.1
Neither positive nor negative	65	27.3
Somewhat negative	23	9.7
Extremely negative	31	13
Not applicable (i.e., did not disclose or no adjustments were made)	39	16.4
How would you rate the impact of disclosing to your coworkers?
Extremely positive	24	10.1
Somewhat positive	63	26.5
Neither positive nor negative	76	31.9
Somewhat negative	23	9.7
Extremely negative	14	5.9
Not applicable (i.e., did not disclose to coworkers)	38	16
How would you rate subsequent adjustments made by your coworkers?
Extremely positive	15	6.3
Somewhat positive	45	18.9
Neither positive nor negative	99	41.6
Somewhat negative	22	9.2
Extremely negative	17	7.1
Not applicable (i.e., did not disclose or no adjustments were made)	40	16.8

Qualitative results

We classified data from the open-ended questions into categories and subcategories through content analysis (see Table 3 for a list of categories, and Supplementary Table S1 for further example quotations). The participants in our study reported a range of reasons to disclose. The most common among these was the desire for increased understanding and acceptance: “People might understand me better—be able to help me if I have difficulties. Protect me if I am in a difficult situation that others to whom I have not disclosed will not know is difficult for me. [P-70]” Participants wrote about disclosure to seek legal protections: “I disclosed for the protection that the autism act gave me as a worker. [P-160]” They also disclosed to improve mental health and well-being: “Managing my physical and mental health became more important to me than hiding. [P-137]” Participants had additional reasons for disclosing, which were to gain reasonable adjustments, as well as to manage and sustain employment: “I need accommodations in order to keep a job for more than one to six months. Not disclosing isn't an option for me. If I don't disclose, I will either be forced to quit or be fired. [P-23]”

Table 3.

Results of Content Analysis—Categories and Subcategories with Frequency of Participant References

Categories	Subcategories	No. of participants	% of participants
Reasons to disclose	Increased understanding from colleagues/employers	59	24.7
	To gain reasonable adjustments	36	15.1
	Responsibility to one's self and to others	26	10.9
	To manage and sustain employment	23	9.7
	Mental health and well-being	14	5.9
	Legal/policy protection	8	3.4
	Evaluate how worthwhile the job is	6	2.5
	Being autistic brings an advantage to the job	3	1.3
Reasons not to disclose	Fear of negative perceptions of others	52	21.8
	Fear of bullying and purposeful discrimination	26	10.9
	Disclosure is not beneficial	12	5
External support when deciding to disclose	No support	95	39.9
	Family	55	23.1
	Friends	35	14.7
	Romantic relationships	30	12.6
	Other sources of support	20	8.4
	Professionals	17	7.1
	Colleagues/employers	10	4.2
	General support	5	2.1
Positive outcomes	Support, acceptance, and understanding from colleagues/employers	68	28.5
	Reasonable adjustments	35	14.7
	Success in recruitment	12	5
	Gaining legal protection	5	2.1
	Provide training to improve autism knowledge	2	<1
Negative outcomes	Lack of support, understanding, and acceptance	70	29.4
	Bullying and purposeful discrimination	45	18.9
	Lack of reasonable adjustments	31	13
Neutral/no outcome		37	15.5

A common thread when talking about these various reasons to disclose was that a negative experience in the workplace had led them to feel compelled to disclose. These retrospective disclosures appeared to be used to explain or mitigate past events. One participant stated, “I was finding things very difficult at work and after having a meltdown down in my manager's office I felt that the best option was to disclose my diagnosis. [P-9]” Another explained how disclosure became necessary after repeated bullying: “In the end it got to the point where I was being treated so badly by my team and it came down to if I have to tell them I'm autistic or things will get worse. [P-166]”

Some sentiments were far more positive, however, with participants disclosing because being autistic was an advantage for the job. This applied to roles where the autistic perspective was thought to be an asset, such as in autism research or supported and inclusive education. One participant stated: “I primarily work in the autism field, so disclosing my autism is positive because it shows I have a better insight. [P-80]” In some cases, participants used disclosure during the application process as a means of gauging whether the role and workplace environment were the right fit: “I used disclosing as a way of working out whether a job was for me. If potential employers reacted negatively to me disclosing my autism, how would they react to me asking for help with something or having a meltdown? [P-229]” Some participants also felt a sense of responsibility to be open about their autistic identity. One participant stated that, “I feel that older autistic people owe it to younger ones to make employers aware of the fact that autistic people are employable. I told them in order to help combat stigma for other colleagues they might work with in the future. [P-29]”

While participants identified many reasons to disclose, they also referred to three distinct subcategories under reasons not to disclose. Again, the most common reason given was related to other people, in this case, the fear of their negative perceptions of the autistic individual: “I worried whether people would see me as different—less capable or less dependable. [P-70]” Participants were also concerned about bullying and purposeful discrimination: “I thought I would be bullied out of my job—I've been bullied in the workplace several times. [P-19]” A smaller subset of participants wrote that disclosure was not beneficial to them and therefore unnecessary.

Given the complexity of the decision to disclose, participants relied on different groups of people for external support in making their decision. These included family members, particularly parents: “My parents are very supportive and did not want me to take a job without disclosing, because they knew it would end badly if I couldn't have accommodations. [P-23]” Others referred to support from their significant others, friends, professionals, colleagues, online communities, and support groups for autistic individuals: “The online autistic community was super helpful. [P-14]” Notably, one-third of the participants said they did not feel they received any support when deciding to disclose.

Once the decision had been made to disclose, the outcomes fell into three categories: positive, negative, and neutral or no outcome. Those who referred to positive outcomes most commonly spoke about support, understanding, and acceptance from colleagues: “The co-workers were very understanding, and they made me settle in better. [P-7]” Receiving reasonable adjustments in the workplace was also a positive outcome of disclosure: “My employer was supportive and open to all suggestions of reasonable adjustments. This was more positive than I expected. [P-9]” Some participants noted that disclosure led to their successful recruitment, or to gaining legal protections. A small percentage (<1%) of the references in this category talked about how their diagnosis improved autism awareness and acceptance in their organization more generally: “In one place, I used the disclosure of my diagnosis to improve the place for our autistic students and to provide autism training and support to other staff. [P-8]”

Participants wrote about negative outcomes of disclosure that were reversals of the positive outcomes. They referred most often to the lack of support, understanding, and acceptance from their colleagues: “No one understood and no one even bothered to read up and teach themselves anything about autism. [P-66]” Another negative outcome was bullying and purposeful discrimination. Participants also referred to the lack of reasonable adjustments after disclosing: “Reasonable adjustments were very difficult to get put in place due to my employer not understanding ASD. [P-15]”

In some cases, the outcomes of disclosure were mixed, leading to a neutral view overall: “The outcomes were a mix of positive and negative.” [P-39] For some participants, disclosure had had no perceived effect on their day-to-day work lives: “There has generally been no change.” [P-30]

Discussion

The results of this study highlight the complexities of disclosing an autism diagnosis within the workplace. Most of the autistic adults who took part in the present survey reported disclosing selectively, but many also disclosed to everyone. Participants most commonly disclosed after starting a job—or when completing application materials, but rarely during the interview process. Participants reported that they disclosed to be visible role models for other autistic individuals, to demonstrate an advantage associated with being on the autistic spectrum, as well as practical reasons such as to enable access to workplace adjustments. A number of participants also viewed disclosure as a route to better mental health and well-being, legal protections, and most of all a quest for better understanding and acceptance. In many cases, individuals disclosed retrospectively in an attempt to explain or mitigate a negative past event. For those who chose not to disclose, it was often a fear of discrimination that led to the decision to keep their autism diagnosis private.

It is interesting to note that when considering disclosure, the autistic people in our study were primarily concerned about how others in the workplace perceived them and behaved toward them. Our findings are in line with existing evidence from the United States that fear of discrimination from others is the most common reason why autistic people choose not to disclose at work.^19,29 Furthermore, we found that the desire for increased understanding and acceptance from colleagues is often what drives disclosure in the workplace. This is contrary to the widely held misconception that autistic individuals prefer to isolate themselves socially and have little concern about the perceptions of others.⁴⁰ Our results suggest that this is not at all the case; in fact, when considering disclosure, autistic people care more about others in the workplace than about maintaining the job or even asking for reasonable adjustments. Worryingly, only a minority of autistic employees in our study felt positive about the impact of disclosing to others in the workplace, and the subsequent adjustments made by their supervisors and coworkers. This, together with the examples of adverse impacts of disclosure shared by our participants, highlights the worrying prevalence of negative reactions from colleagues. We suggest that to improve disclosure for autistic individuals, nonautistic colleagues must be included in the process. Rather than the burden of responsibility falling on the autistic individual, we recommend that the onus should instead be on organization leaders to promote a more inclusive workplace culture. One way to change workplace cultures and collective attitudes toward disability may be to provide autism training to nonautistic employers and employees. Indeed research has shown that there is a strong association between the level of autism knowledge held by a nonautistic individual and their favorable perceptions of an autistic person who discloses.²² To address the poor satisfaction regarding adjustments, employers should involve their autistic employees in deciding which adjustments are suited to an individual's needs—a crucial factor in successful employment outcomes.¹¹

Many participants made statements that reflected the necessity of disclosure rather than disclosure as a choice. The fact that many participants in our study felt forced to disclose may indicate a breakdown in the organizational processes that failed to show support for autistic employees. It may also show a lack of trust toward their organizations if autistic employees only disclosed after encountering issues at work. To avoid this, one recommendation is that employers have clear proactive protocols for disclosure. These should not only make the employees aware of how they can disclose, but also confirm that the organization values diversity and has created a clear pathway for disclosure. However, disclosure may not be the goal for all autistic employees, and having a pathway to disclosure is just one indication that a workplace is truly inclusive. Indeed disclosure may be less necessary, and therefore, less frequent, where coworkers are accepting of different ways of working and communicating, employers allow flexible working arrangements to suit individual needs, and workplaces adhere to legal and ethical guidelines. Disclosure as a choice should mean that it is purely the decision of the autistic employee whether or not to disclose, with no external factors necessitating it.

While our participants most commonly disclosed once in a job, a substantial group chose to disclose in the application materials. This challenges the emphasis placed on job interviews in the disclosure literature,^30,36,41 demonstrating that studies on autism disclosure with a focus on application materials would be more reflective of real-life situations. This new understanding of the timing of disclosure means that we can provide more targeted supports for autistic job-seekers and recommendations for employees.

One limitation of the current study is that our sample may not be representative of the autistic population in the United Kingdom. The participants in the current study were female; however, males are more likely to receive a clinical diagnosis of autism based on current screening tools.⁴² This overrepresentation based on gender is also common in online surveys; research has shown that females are more likely than males to participate in survey studies,⁴³ and this was true for the larger Diverse Minds Survey. There is also no conclusive evidence demonstrating that autism varies significantly by race or ethnicity, or that there is any association between autism and race/ethnicity in the wider autistic population.⁴² However, our sample was 95% white; this is also greater than the percentage for the U.K. population more generally.⁴⁴ We had hoped for a more diverse sample, and in future research this should be achieved by recruiting directly within minority communities via specific online community groups and community networks. Notably, one-third of our participants also had higher education degrees (i.e., Masters degree or higher). While a growing number of autistic students are enrolled in higher degree programs across the United Kingdom,^45,46 the latest available government statistics estimate that less than 1% of people in the United Kingdom have postgraduate degrees⁴⁷; even fewer postgraduates are autistic individuals, who make up an estimated 1% of the U.K. population.⁴⁸ Furthermore, autistic school graduates are less likely than nonautistic graduates to pursue higher education.⁴⁹ From this, we can conclude that our sample has a much higher representation of individuals holding postgraduate degrees than the wider autistic population in the United Kingdom.

A second limitation of the current study is possible bias that arose due to our recruitment channels. We recruited some participants through Autistica's corporate partners, who may have more autism knowledge than most U.K. employers. Consequently, the autistic individuals in this study may have had more positive experiences of disclosure than the wider autistic adult population.

Lastly—and not unexpectedly—our sample only included a small number of participants who chose not to disclose their diagnosis at work. Such individuals may be less likely to engage with an autism research study for fear of their diagnosis becoming public. The views of those who choose not to disclose are extremely important, and future research should seek to include their voices. Future studies should also examine in more detail what determines a positive or negative outcome of disclosure, particularly in relation to the perceptions of others in the workplace.

Despite these caveats, our study is the largest study to specifically consider experiences of workplace disclosure for autistic adults in the United Kingdom and the results have implications for both research and practice. Perhaps most importantly, autistic individuals should not be solely responsible for the impact of their decision; it is also the responsibility of nonautistic individuals and the wider organization. Workplaces must focus on creating a culture of inclusion that both allows for and embraces autism disclosure, but does not necessitate disclosure in order for employees to feel supported and included. Improving autism knowledge in workplaces is a recommended first step, but it must also be followed by real changes to the workplace environment that make it truly inclusive: flexible working arrangements, physical changes that take into account sensory sensitivities (e.g., nonfluorescent or low lighting, quiet spaces), and alternatives to face-to-face job interviews during recruitment to allow for autistic candidates to show their strengths (e.g., performing actual job tasks for a potential employer). Disclosure should be a choice made solely by the autistic individual, and inclusive workplace environments should make disclosure easier but not essential to an employee's success.

Footnotes

Authorship Confirmation Statement

A.M.R., B.H., and A.R. contributed to the study concept and developed the survey questions. B.H. led participant recruitment, designed the online questionnaires, and extracted the data. A.M.R. and J.D. conducted data analysis. A.M.R. and A.R. drafted the article and Z.W., B.H., and J.D. provided critical revisions. All coauthors have reviewed and approved of this article before submission. This article has been submitted solely to this journal and is not published, in press, or submitted elsewhere.

Acknowledgments

The authors would like to thank Dr. Felicity Armstrong for facilitating helpful discussions around this study, and Dr. Laura Crane for her invaluable feedback on the initial draft of the article.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

This research was funded by Autistica UK through the DARE project.

Supplementary Material

References

Kenny

, Hattersley

, Molins

, Buckley

, Povey

, Pellicano

. Which terms should be used to describe autism? Perspectives from the UK autism community. Autism. 2015; 20(4):442–462.

Baldwin

, Costley

, Warren

. Employment activities and experiences of adults with high-functioning autism and Asperger's disorder. J Autism Dev Disord. 2014; 44(10):2440–2449.

Bennett

, Dukes

. Employment instruction for secondary students with autism spectrum disorder: A systematic review of the literature. Educ Train Autism Dev Disabil. 2013; 48(1):67–75.

Roux

, Shattuck

, Cooper

, Anderson

, Wagner

, Narendorf

. Postsecondary employment experiences among young adults with an autism spectrum disorder. J Am Acad Child Adolesc Psychiatry. 2013; 52(9):931–939.

Wilczynski

, Trammell

, Clarke

. Improving employment outcomes among adolescents and adults on the autism spectrum. Psychol Schools. 2013; 50(9):876–887.

National Autistic Society. The Employment Gap. London: National Autistic Society; 2016. http://www.autism.org.uk/get-involved/media-centre/news/2016-10-27-employment-gap.aspx (accessed September 13, 2020).

Barneveld

, Swaab

, Fagel

, van Engeland

, Sonneville

. Quality of life: A case-controlled long-term follow-up study, comparing young high-functioning adults with autism spectrum disorders with adults with other psychiatric disorders diagnosed in childhood. Compr Psychiatry. 2014; 55(2):302–310.

Burgess

, Gutstein

. Quality of life for people with autism: Raising the standard for evaluating successful outcomes. Child Adolesc Ment Health. 2007; 12(2):80–86.

Jacob

, Scott

, Falkmer

. The costs and benefits of employing an adult with autism spectrum disorder: A systematic review. PLoS One. 2015; 10(10):e0139896.

10.

Bontempo

Sensory Processing Patterns in High-Ability Adults with Autism Spectrum Disorders in the Workplace. Queen's University, Kingston, Ontario: ProQuest Dissertations Publishing; 2009.

11.

Hendricks

Employment and adults with autism spectrum disorders: Challenges and strategies for success. J Vocat Rehabil. 2010; 32(2):125–134.

12.

Remington

, Pellicano

. “Sometimes you just need someone to take a chance on you”: An internship program for autistic graduates at Deutsche Bank, UK. J Manag Org. 2019; 25(4):516–534.

13.

Burt

, Fuller

, Lewis

. Brief report: Competitive employment of adults with autism. J Autism Dev Disord. 1991; 21(2):237–242.

14.

Howlin

, Alcock

, Burkin

. An 8 year follow-up of a specialist supported employment service for high-ability adults with autism or Asperger syndrome. Autism. 2005; 9(5):533–549.

15.

Sperry

LA.

, Mesibov

GB.

Perceptions of social challenges of adults with autism spectrum disorder. Autism. 2005; 9(4):362–376.

16.

Bublitz

, Fitzgerald

, Alarcon

, et al. Verbal behaviors during employment interviews of college students with and without ASD. J Vocat Rehabil. 2017; 47(1):79–92.

17.

Mawhood

, Howlin

. The outcome of a supported employment scheme for high-functioning adults with autism or Asperger syndrome. Autism. 1999; 3(3):229–254.

18.

Morgan

, Leatzow

, Clark

, Siller

. Interview skills for adults with autism spectrum disorder: A pilot randomized controlled trial. J Autism Dev Disord. 2014; 44:2290–2300.

19.

Sarrett

Interviews, disclosures, and misperceptions: Autistic adults' perspectives on employment-related challenges. Disabil Stud Q. 2017; 37(2):5524.

20.

Smith

, Ginger

, Wright

, et al. Virtual reality job interview training in adults with autism spectrum disorder. J Autism Dev Disord. 2014; 44(1):2450–2463.

21.

Strickland

, Coles

, Southern

. JobTIPS: A transition to employment program for individuals with autism spectrum disorders. J Autism Dev Disord. 2013; 43(10):2472–2483.

22.

Sasson

, Morrison

. First impressions of adults with autism improve with diagnostic disclosure and increased autism knowledge of peers. Autism. 2017; 23(1):50–59.

23.

Hiruma

. Impact of a Student's Diagnosis of Autism Spectrum Disorder on General Education Teachers' Attitudes. New York State University at Albany: Proquest Dissertations Publishing; 2011. http://search.proquest.com (accessed September 13, 2020).

24.

Johnson

, Joshi

. Disclosure on the autism spectrum: Understanding disclosure among employees on the autism spectrum. Ind Organ Psychol. 2014; 7(2):278–281.

25.

McLeod

, Meanwell

, Hawbaker

. The experiences of college students on the autism spectrum: A comparison to their neurotypical peers. J Autism Dev Disord. 2019; 49(6):2320–2336.

26.

Heasman

, Gillespie

. Participants over-estimate how helpful they are in a two-player game scenario toward an artificial confederate that discloses a diagnosis of autism. Front Psychol. 2019; 10:1349.

27.

White

, Barretto

, Harrington

, Kapp

, Hayes

, Russell

. Is disclosing an autism spectrum disorder in school associated with reduced stigmatization?. Autism. 2020; 24(3):744–754.

28.

Brohan

, Henderson

, Wheat

, et al. Systematic review of beliefs, behaviors, and influencing factors associated with disclosure of a mental health problem in the workplace. BMC Psychiatry. 2012; 12(11).

29.

Morris

, Begel

, Wiedermann

, eds. Understanding the Challenges Faced by Neurodiverse Software Engineering Employees: Towards a More Inclusive and Productive Technical Workforce. Lisbon, Portugal: International ACM SIGACCESS; 2015.

30.

Flower

, Dickens

, Hedley

. Barriers to employment for individuals with autism spectrum disorder: Perceptions of autistic and non-autistic job candidates during a simulated job interview. J Intellect Disabil Res. 2019; 63(7):652.

31.

Ameri

, Schur

, Adya

, et al. The disability employment puzzle: A field experiment on employer hiring behavior. Ind Labor Relat Rev. 2018; 71(2):329–364.

32.

National Autistic Society. Finding Work: A Job Searching and Employment Preparation Workbook for Autistic People. London: National Autistic Society; 2014.

33.

Nicholas

, Mitchell

, Dudley

, et al. An ecosystem approach to employment and autism spectrum disorder. J Autism Dev Disord. 2018; 48:264–275.

34.

Lindsay

, Osten

, Rezai

, Bui

. Disclosure and workplace accommodations for people with autism: A systematic review. Disabil Rehabil. 2019. [Epub ahead of Print]; DOI: 10.1080/09638288.2019.1635658.

35.

Ohl

, Grice Sheff

, Small

, et al. Predictors of employment status among adults with autism spectrum disorder. Work. 2017; 56(2):345–355.

36.

McMahon

, Henry

, Linthicum

. Employability in autism spectrum disorder (ASD): Job candidate's diagnostic disclosure and ASD characteristics and employer's ASD knowledge and social desirability. J Exp Psychol Appl. 2020. [Epub ahead of Print]; DOI: 10.1037/xap0000282.

37.

Qualtrics. Qualtrics Version 1.31.1. Provo, Utah: Qualtrics LLC; 2019.

38.

SPSS

Inc.

IBM SPSS Statistics 26 for Windows User's Guide. Chicago, IL: SPSS, Inc.; 2019.

39.

Downe-Wamboldt

Content analysis: Method, applications, and issues. Health Care Women Int. 1992; 13(3):313–321.

40.

Dodd

Understanding Autism. Sydney: Elsevier; 2005.

41.

Dalgin

, Bellini

. Invisible disability disclosure in an employment interview. Rehabil Counsel Bull. 2008; 52(1):6–15.

42.

Elsabbagh

, Divan

, Koh

, et al. Global prevalence of autism and other pervasive developmental disorders. Autism Res. 2012; 5(3);160–179.

43.

Aerny-Perreten

, Dominguez-Berjon

, Esteban-Vasallo

, Garcia-Riolobo

. Participation and factors associated with late or non-response to an online survey in primary care. Journ Eval Clin Prac. 2015; 21(4);688–693.

44.

UK Government. UK Population by Ethnicity. London: UK Government; 2018. https://www.ethnicity-facts-figures.service.gov.uk/uk-population-by-ethnicity (accessed September 13, 2020).

45.

Hastwell

, Martin

, Baron Cohen

, Harding

. Giving Cambridge University students with Asperger syndrome a voice: A qualitative, interview-based study towards developing a model of best practice. Good Autism Prac. 2012; 13(1):56–63.

46.

MacLeod

, Green

. Beyond the books: Case study of a collaborative and holistic support model for university students with Asperger syndrome. Stud High Ed. 2009; 34(6):631–646.

47.

Higher Education Statistics Agency. Higher Education Student Enrolments and Qualifications Obtained at Higher Education Providers in the United Kingdom 2015/16. London: HESA; 2016. https://www.hesa.ac.uk/news/12-01-2017/sfr242-student-enrolments-and-qualifications (accessed September 13, 2020).

48.

Ambitious About Autism. Information About Autism. London: Ambitious About Autism; 2020. https://www.ambitiousaboutautism.org.uk (accessed September 13, 2020).

49.

National Autistic Society. Widening Access to Higher Education for Autistic Students. London: National Autistic Society; 2016. https://network.autism.org.uk/good-practice/evidence-base/widening-access-higher-education-autistic-students (accessed September 13, 2020).

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.02 MB