To tell or not to tell – disclosure of autism in the workplace

Abstract

Autism, sometimes called an ‘invisible disability’, can lead to different difficulties for young adults entering the workplace as well as maintaining the job. One of the questions young adults with autism face: should he/she/they disclose the information about their autism to the employer? This current study aims to fill a gap in research on the young adult population with autism in the workplace, particularly within the Latvian context. Four young adults (aged 18–26) living and working in Latvia, who have identified themselves as having autism, job seekers and employees with strong language and intellectual abilities, and their mothers participated in this study. Qualitative semi-structured interviews were conducted to gather in-depth data from participants; after that, an inductive content analysis was made. The results reveal that young adults do not disclose that they have autism to neither co-workers nor employers, yet at the same time, they are ready to disclose it to close friends outside of the workplace. Four main reasons for not disclosing their status on the autism spectrum emerged. To begin with, young adults did not want to be treated differently; they wanted to be perceived as ‘normal’. Second, they feared social stigma. Third, they did not feel there could be any benefits by disclosing their autism to their employer. Finally, it is much more important to explain to their employer what the often-unique limitations of each specific young person with autism are and how to overcome them than to just inform only of their autistic status.

Introduction

Moving away from the so-called ‘Soviet legacy’, when children and young people with special needs were traditionally segregated during general education, such pupils were moved either to separate classrooms or special schools, in the last 20 years more and more children with special needs have had the opportunity to experience inclusion into general schools in Latvia. The term special needs in Latvia in general education (from preschool up to 12 grade) is used as an umbrella term to identify children who are formally diagnosed (by speech therapists, psychologists, or Pedagogical Medical Commissions, or doctors) as having need for additional support during the educational process. After graduating general school, certain children with special needs would continue with professional, higher education or enter the labour market. One of these groups is young adults with autism. In this paper, in accordance with the Diagnostic and Statistical Manual of Mental Disorders: DSM-5™ (5th ed.) (American Psychiatric Association 2013), we will use the term autism spectrum disorder (ASD). However, Latvia still uses ICD-10 (International Classification of Diseases – 10th edition) (World Health Organisation 1992) and terms such as pervasive developmental disorders, including childhood autism, Asperger’s Syndrome disorder, and atypical autisms for diagnosing persons with ASD. ASD is a lifelong neurodevelopmental disorder (American Psychiatric Association 2013), that affects person’s communication, social interaction, and behaviour. It is a spectrum disorder, meaning that it affects individuals in different ways and to varying degrees of severity. Some common characteristics of ASD include difficulty with social interactions, delayed or unusual language development, repetitive behaviours or routines, and hypersensitivity to certain sensory stimuli such as sounds or textures. The exact causes of ASD are not fully understood yet, but it is believed to be a combination of genetic and environmental factors (Whiteley et al. 2021, Hirota and King 2023).

As we know from research, the label ASD is one of the most rapidly and increasingly identified disorders in the world; every year there are more persons diagnosed with ASD (Maenner et al. 2021). According to Latvia’s data (Health Statistic Database 2021), the number of Latvians officially diagnosed with ASD has increased over the past 12 years (Table 1). Leaving general school can be challenging for many young adults, but particularly for those with ASD. In Latvia, after completing general education, young adults who are diagnosed with ASD by law in contrary with general education are not obliged in any way to disclose the fact they had special needs, to neither a higher education institution nor an employer. By the Labour Law (2001) employers are obliged to ensure equal rights for all employees. They are obliged to make necessary adjustments for persons with disability (Note. The person should apply to receive formally such status from State Commission of Doctors for Health and Working Capacity Expertise. There are still officially used term ‘invalidity’ in Latvia. It is recognized as formal label for persons with disability.) as far it is not an unreasonable burden on the employer (The Labour Law 2001, Article 3, Section 7). It would mean that persons with ASD should receive any support and accommodations from the employer to apply for disability status and after that disclose it to the employer.

Table 1.

Statistic data about persons diagnosed with ASD in Latvia in 2021 and 2009, based on ICD-10 (Health Statistic Database, 2021).

Year	Diagnosis F84 Pervasive developmental disorders (all together)	a.Including F84.0 childhood autism	b.Including F 84.1 atypical autisms	c.Including F 84.5 Asperger syndrome	Total a   +   b + c
2021	711	358	119	38	515
2009	350	58	66	6	130

We know from the research that persons with ASD can have specific transitional needs and need for support and accommodations when entering work life (Griffiths et al. 2016) and/or higher education (Kranke et al. 2013). Although literature worldwide addresses different issues that young adults with ASD experience entering work life, the research in Latvia on ASD and work life lags behind. Therefore, our research seeks to fill a gap on ASD and work life in Latvia. Specifically, we will join in the discussion about persons with ASD disclosing or not disclosing their ASD status in the workplace. Our paper will mainly focus on autistic job seekers and employees with strong language and intellectual abilities.

There are two research questions we would like to explore: first, whether or not young adults with ASD choose to formally disclose and verify their ASD status to the employer; second, what are the reasons behind making such decision of disclosing or not disclosing?

Disclosing ASD status

Employment is one of the predictors of quality of life for autistic adults (Mason et al. 2018). Entering work life can be highly challenging for young adults with ASD. The difficulties can be due to the ASD itself and to the way it is seen by others. ASD is sometimes called an ‘invisible disability’ (Santuzzi et al. 2014) which is not readily apparent to the employer and co-workers. Lindsay (Lindsay et al. 2018) and a colleague have made a systemic literature review on disability disclosure and workplace accommodations for youth and young adults with disabilities. The main findings were that facilitators of disability disclosure included both individual factors (i.e. knowledge of supports and workplace rights, self-advocacy skills), employment related factors (i.e. training/supports, effective communication with employers, realizing the benefits of accommodations), and societal factors (i.e. positive attitudes toward people with disabilities). To integrate in the workplace requires specific strategies, support and accommodations for individuals with ASD (Khalifa et al. 2020) from the employer and/or the family. To receive such extra support and additional workplace accommodations a person should ‘come out’ about their ASD. If a choice is made that if a person does not disclose his/her/their disability status, he/she/they will not receive any special support and accommodations. Still, the decision made by a young adult to disclose their disability status has a complicated nature and depends on several factors (Kranke et al. 2013). Previous research reveals disclosure can trigger both positive and negative responses in the workplace (Johnson and Joshi 2016). Future more, decision to disclose can be related to higher autistic identity (Cage and Troxell-Whitman 2020).

Generally, research suggests that disclosure decisions are influenced by perceived needs for support and accommodations, and anticipated positive or negative (e.g. stigma, not being hired) outcomes (Schwartz et al. 2022). Research about university students with nonapparent disabilities identifying factors that may lead to disclosure (Thompson-Ebanks and Jarman 2018) found that the possibility to receive the supports to help them have a successful university experience has caused them to disclose their disability status. There was another reason to disclose: the possibility to reduce misunderstandings regarding nonapparent disabilities. There were several reasons put forward not to disclose. Most were related to anticipated positive or negative outcomes for a person with this disability; a lack of information concerning provided services for students with no apparent disability; difficulty in documenting disability and attitudes regarding disclosing it; and a fear of being treated differently or stigmatised. Some of those perceptions could be just assumptions. For example, in a study of college instructors with Aspergers syndrome who disclosed their autism status to students, the instructors received higher student ratings than those who did not (Kaupins et al. 2020). Furthermore, disclosure has positive effects on social acceptance and perceptions of disability for people with autism (Thompson-Hodgetts et al. 2020).

Self-disclosure can be related to past experiences of discrimination which could result in a reluctance to disclose their disability at all (Vincent and Fabri 2022). White et al. (2020) and colleagues found that disclosing an autism diagnosis during the school did not make any positive changes for autistic pupils. Non-disclosure of ASD also could be related to the desire to avoid negative emotions and possible different treatment. Selznick (2014) introduced the idea of passing– to conceal the fact of disability in order to avoid the stigma of disability and pass as ‘normal’. Recently the theme of camouflaging in autism has gain researchers interest (Fombonne 2020). As it appears there are some individuals with autism that employ different strategies to cope with their everyday life, thus 'camouflaging’ their autistic exceptionalities (Cook et al. 2021).

Romualdez et al. (2021a) and colleagues in their research explain why people might not disclose their ASD status: they want to keep their ASD status private, and the disclosure can have mixed outcomes. In the research carried out by Romualdez et al. (2021b) and colleagues adult participants with ASD from UK identified both - reasons to disclose and reasons not to disclose. The reasons not to disclose were mostly connected with concerns about how this might affect the attitudes of others in the workplace.

Lindsay et al. (2021) and colleagues in their systematic review analysed 26 studies (participants age 13–75) about the decisions of autistic people to disclose their condition. Researchers concluded that disclosing a condition of autism in the workplace is a complex phenomenon. The most frequent reason not to disclose the condition of autism to employers involves experiencing stigma and discrimination. At the same time, the researchers have identified benefits of disclosing the condition of autism in the workplace, including greater acceptance and inclusion, receiving appropriate accommodations, and increasing awareness about autism (Lindsay et al. 2021).

Methodology

Study design

This qualitative study used semi structured interviews and inductive content analysis to analyze work experiences of young adults with ASD and their mothers’ feedback about it.

Participants

In accordance with ethical clearance obtained from The University of Latvia Humanities and Social Sciences Research Ethics Committee, all participants provided written informed consent to participate in the study. Participants were recruited through purposive sampling, by selecting the individuals that can provide deep inside to answer the research questions. We put forward several criteria. Candidates had to be autistic job seekers and employees, have participated in the labor market in Latvia during general schooling, during study in vocational or higher education, and after their studies. We were looking for young adults who have already completed their university studies or vocational education, for those who are still studying, for those who have both long-term job-seeking and work experience (at least 3 years), and those who had short-term job experience (for example, in the summer). Therefore, included in the study were only those young adults who identified themselves as a person with ASD. As we as researchers experienced some difficulties finding participants for the research, we asked the Autism Society of Latvia to be involved in recruiting the young adults with ASD. The researchers spread information and requests for participation through the Society’s Facebook page. In this way, we found participants through mothers who are members of the Latvian Autism Society or participating in the specific Society Social and Facebook group. We managed to receive four positive responses (Table 2). All of them were young males with ASD, age 18–26, all of them live in Latvia, live with their mothers, and they had different lengths of professional experience (3 months up to 5 years). They had acknowledged that they had been diagnosed with ASD in their childhood (from age 4 up to age 13). All names of persons with ASD were changed to ensure the participants’ anonymity.

Table 2.

List of participants (persons with ASD).

Name	Age	Sex	Education	Professional experience	Length of professional experience	Living condition	Age at which condition was identified/ diagnosed	Diagnosis ICD-10 (International Classification of Diseases – 10th edition) (World Health Organisation, 1992)
Jānis	26	Male	Master’s degree	Tour guide	4.5 years (two workplaces)	With mother	13	Asperger’s Syndrome disorder
Roberts	18	Male	Vocational secondary education	Project work/IT	4 years (part-time	With mother	4	Asperger’s Syndrome disorder
Ernests	18	Male	Vocational secondary education	Assistant, to social pedagogue, social services	Three months (summer period)	With mother	10	Asperger’s Syndrome disorder
Dans	20	Male	Vocational secondary education	Vendor	4 years (3 workplaces)	With mother	8	Asperger’s Syndrome disorder

Mothers of the selected participants are in the age group from 43 up to 53; one mother did not want to reveal her age (Table 3). Mothers are involved in the research as they can provide unique and important inside into the young adults with ASD life. All mothers have had higher education. All names of persons with ASD mothers were changed to ensure the participants’ anonymity.

Table 3.

List of participants (mothers of persons with ASD).

Role	Age	Education
Mother of Jānis	53	Higher education, not specified
Mother of Roberts	43	Higher education, not specified
Mother of Ernests	– (did not want to provide the data)	Higher education, not specified
Mother od Dans	46	Higher education, not specified

Data collection

Data for the study were collected from August through October of 2022. At first, qualitative interviews were planned using semi-structured interviews. After the first researcher prepared drafts of semi-structured interviews, the second researcher, who has experience working with persons with special needs and has a special education qualification, reviewed the questions. We added some open-ended questions to make the interviews more flexible. The semi-structured questions were structured around the following topics: job-finding experience; work experience; keeping a job; support in the work place; difficulties related to ASD; disclosure of ASD status to employers; and experience with co-workers and others; and decision making whether to disclose their ASD status. The questions were almost identical for the young adults and their mothers. For example, if we asked the son about a young adult’s experience in finding a job, we asked the same question to his mother, so that she could tell us about her son’s experience in finding a job.

The interviews lasted between 18 and 29 min. The second researcher and the respondents chose the location for the interviews. Three interviews (with mothers) were organized online using Zoom and Microsoft Teams, while the others were face-to-face interviews. The interviews opened with the researcher providing an informed consent document to the interviewees that included participation eligibility criteria and the purpose of the study. Interviewees read it and signed. We informed participants that their responses would be anonymous. All interviews were audio recorded and transcribed verbatim. The second researcher reviewed the completed transcriptions and checked for errors, and then anonymized those transcriptions. The second researcher excluded words/phrases and places that could allow the interviewed persons to be identified (for example, the workplace name). After that, the transcriptions analyzed the first researcher and critiqued the third researcher. The third researcher edited the whole paper and advised on language issues.

Data analyses

This was a qualitative research design in which semi-structured interviews were undertaken. Qualitative research is especially suited to exploring new topics where there is not enough existing knowledge (Creswell 2013). As researchers, we wanted to emphasize the unique subjective experience of young people with ASD and their mothers, thus we used an exploratory study answering a novel question in Latvian cultural context. We chose an inductive (data-driven) (Patton 2002) and idiographic (individual-focused) approach, moving from the specific to general. As suggested by Elo and Kyngäs (2008), we used content analysis, where it is possible to distil words into fewer content- related categories (Elo and Kyngäs 2008, 109 p.). In inductive analyses, we used three-phase process: preparation, organizing and reporting (Elo and Kyngäs 2008). In the preparatory phase, we selected units of analysis. As interviews also consisted of other irrelevant information, redundant information was separated. After that, we analyzed selected units from all interviews with young adults with ASD and with their mothers. In the organization phase open coding of relevant quotes to support codes was carried out, followed by creating sub categories, general categories and finally abstraction – main categories (Table 4).

Table 4.

Example of analyses.

Quote	Sub category	General category	Main category
It has to do with stereotypes. I think autism is more associated with someone who can’t control themselves, who screams - but the reality is that it can be reduced. (Robert, 18).	Judged by their diagnosis, social attitude, stigma, assumptions.	Not to disclose.	Reason behind the decisions of disclosing.
Stigma. He will be perceived as different. For example, it will immediately happen that you will not be accepted, or will be accepted in a different way, will be asked to do more or opposite – an easier job. Thinking that you are not as capable as you really are. (Ernests, 18).	Judged by their diagnosis, social attitude, stigma, assumptions.	Not to disclose	Reason behind the decisions of disclosing.

While reading the transcriptions, the researcher took notes and wrote down headings. The researcher read the text several times. After that, the categories emerged from the headings. The data were analyzed in light of the study’s research questions and interrogated for further in-depth analysis to decide which categories to collapse and which aspects of the data should be placed in the same category. After categories were grouped under higher order headings, general categories emerged; categories were grouped as main categories. This process did not involve the use of any specific software. At the end, a dialogue between two of the researchers was set up to agree on the way in which the data should be analyzed and the results organized. The researchers met several times to discuss and review the results. Finally, the third researcher reviewed all the results.

Findings

After carrying out our inductive content analyses there were identified several subcategories, general categories, and developed abstraction - main categories (Table 5).

Table 5.

Sub categories, general categories and main categories.

Main category	General category	Sub category
Disclosure of autistic status	To disclose Not to disclose	Disclosure at present. Disclosure in future. Disclosure to employer. Disclosure to co-workers. Disclosure to peers (friends). By young adults with ASD. By mothers with ASD.
Reason behind the disclosure	Not disclose	Did not want to be treated differently. Judged by their diagnosis, social attitude, stigma, assumptions. Do not have any benefits by disclosing the autistic status. It makes no sense to reveal the diagnosis, explain to employer what the limitations of each specific young person with ASD are and how to overcome them. By young adults with ASD. By mothers with ASD.
Employer related aspects of disclosure	Why to disclose the ASD status to employer. Does the employer know about the person’s ASD Need for accommodations at work - the ways to overcome the difficulties	Status of ASD. Status of invalidity. By young adults with ASD. By mothers with ASD.

Disclosure of autistic status

All four young adults with ASD were united in their responses about disclosure of ASD to their employers: none of them informed their employers of their ASD status; neither were they asked about it.

Their decisions not to disclose in all cases were supported by their mothers. All mothers in a almost similar way explained that the son himself must consider whether to discuss his diagnosis with others, and therefore must make his own decision. The mother (age 53) of Janis explains that decision to disclose should came from the son, as he is an independent man and has to make his own decision and make choices in his life, so that in the future he can live an independent life. Dans’ mother (age 46) said that as soon as the son could hide the diagnosis, he took advantage of the situation. Already after graduating the 9th grade in general school and entering the vocational school, no one asked him about it, so no one at school knew his diagnosis, and he did not disclose it to anyone. The son did not reveal the diagnosis at the workplace either.

When we asked young adults whether they should disclose their ASD status in the future, three participants responded negatively. Dans explained that it is nothing special or to ‘be proud of’, therefore he does not think it should be disclosed in the future. At the same time if someone asks, he would be honest and disclose his status. Roberts said the same:

I probably wouldn’t say, I think if asked I would answer truthfully, but if not asked I wouldn’t say it myself. (Roberts, 18).

One out of the four said that in the future he will tell about his ASD status, because he believes that he does not have a very severe form of ASD, so people would learn to understand it in the future and wouldn’t make it something special.

The young adults did not disclose their ASD status to their work colleagues either. At the same time, they are not afraid to disclose it to their peers - friends.

No, I haven’t disclose it to co-workers. I have only disclosed that I have Asperger’s syndrome to a fellow student who has known me since school. And with whom I have developed such a lifelong friendship and we can understand each other and give some advice. (Jānis, 26).

Reasons behind decisions not to disclose

When we asked young people why they chose not to disclose their status to their employer, they indicated that they wanted to enter the labour market just like everyone else.

By analysing the statements, it was possible to distinguish several reasons why young people do not want to disclose their ASD to employers. First, they did not want to be treated differently. For example, Roberts (18) does not want to be treated differently as if he were requiring something more and special than his co-workers. All four admitted that they want to be treated like a normal person. Secondly, they did not want to be judged by their diagnosis. As it was admitted by both young adults and their parents, society still has various negative and incorrect stereotypes about ASD.

It has to do with stereotypes. I think autism is more associated with someone who can’t control themselves, who screams - but the reality is that it can be reduced. (Roberts, 18).

Ernests explains that this stereotypical attitude creates a stigma: it can directly affect job opportunities, and it can threaten or reduce the well-being of young people in the work environment.

Stigma. He will be perceived as different. For example, it will immediately happen that you will not be accepted, or will be accepted in a different way, will be asked to do more or opposite – an easier job. Thinking that you are not as capable as you really are. (Ernests, 18).

As the mother of Ernests explained, despite the fact that employers can have some tax reductions when they employ a person with disability, in Latvia it remains a high possibility that the person will not be hired because of his diagnosis:

When you say the diagnosis, many employers may not hire because they don’t go into what’s underneath, but it’s related to a mental or neurological disorder, my child will be refused. (Ernests mother, age unknown).

As admitted by participants, the perception about people with ASD sometimes can be based on, as they put it, different strange assumptions about persons with ASD. It has to do with not enough knowledge of what ASD is or people holding on to some outdated knowledge about ASD. Stereotypes of ASD can affect the ways in which ASD people are seen. ASD is a disorder in a spectrum: it means from one person you cannot make judgements about all persons with ASD. Nevertheless, exactly that sometimes happens.

Let’s say I disclose I'm on the autistic spectrum, it for employer immediately shows that I have some kind of problem and I won’t be able to do my job well. It is human nature, they see and think what they have heard or seen and if they do not know about really ASD it will naturally give a negative attitude. If they knew, then they could evaluate my skills objectively and tell me whether I am suitable for this job or not. Not just to base their decision on assumptions. (Dans, 20).

Thirdly, as participants admitted, they do not have any benefits by disclosing the ASD status. Young adults did not find it helpful for their job and wellbeing in the job to disclose their autism. As it was explained by mothers, in Latvia employers do not have any special obligation by law to provide special support or any accommodations in the workplace for people with ASD. There is some kind of obligation to provide extra accommodations, if you have the official status of disability and disclose it. However, none of the young adults disclosed it either. Mothers supported their sons’ view:

Basically, not every employer needs to know because it doesn’t affect anything. (Ernests mother, age unknown).

In addition, it makes no sense to reveal the diagnosis; it is much more important to explain to an employer what the limitations of each specific young person with ASD are and how to overcome them. Dan’s mother (46) provided an interesting explanation of why the diagnosis should not be disclosed to the employer. She pointed out that because ASD is a spectrum, knowing the diagnosis doesn’t help the employer much. It is much more important to teach the young person to communicate what his difficulties and limitations are and how to overcome them. For example, if an employee says that he is allergic to flour products, no one will make him eat them on purpose. It is the same for people with ASD. If there are some difficulties, but otherwise the person is able to cope with his responsibilities, no one will specially and purposefully makes him do something that is not specifically good for that person.

Should I say it right away, I think not. There are simple things that need to be said, it is not informative to say that there is an ASD. What is the employer to do with it? There can be many things in that 'basket’. (Dans’ mother, 46).

Employer related aspects of disclosure

We asked participants under what conditions they would advise other young people with ASD to disclose their autistic status to employers. The most important condition was mentioned: the employer needs to have knowledge and deep understanding about ASD. If the employer understands ASD, he/she/they will also be able to support the young person and build better working relationships. Otherwise, if the employer doesn’t understand autism, he/she/they can follow different kinds of prejudice and assumptions, and that can only make the young person’s situation in work and relationships worse.

Well, the question is: does the employer understand what it is (autism- authors)? If the employer understands, then there will be no problem. He will be able assist that person, to get along better with that person. But if he doesn’t understand that, then he may not get along with that person, he will make life for him very hard. People have different perceptions about autism. (Jānis, 26).

Another aspect was added by Roberts’ mother (43), as she has experienced different examples – both bad and good ones in the workplaces. She mentioned that working culture and attitudes from co-workers are very important too.

One of the participants (Jānis, 26) suspected that at his first workplace the employer had recognized some characteristics of a person with ASD in him. At the same time, he admitted that it was never particularly mentioned or discussed by the employer. The only thing the young man had noticed is that work instructions were very specific. If a mistake were made, the employer immediately reacted and explained in a straightforward manner why and how it should be done differently. The young man explains it more by the fact that the work team was very small; they could supervise each other very closely. He thought that such an attitude would apply to anyone who starts his career in a new place.

When asking Jānis’ mother the same question, she confirmed that neither she nor her son told the employer about his ASD status. At the same time, she suspected that employer somehow knew it:

This question is very difficult to answer. I didn’t say it personally and he didn’t say it either, but I think employer knew, and that rather he found out from someone. (Jānis mother, 53).

She explained that the son’s first employer was from the United States, and so he may have had experience working with people with ASD. The employer’s attitude has been very positive, because the most important thing for the employer was that the work is done with quality and on time, and that the son was able to perform his duties well. The son is very talented in his field: he has learned to listen to instructions, and he is ready to carry them out accurately.

Overall, in every interview participants admitted that neither the ASD status nor any disability was revealed, nor other disability status. Accordingly, this meant that the employer did not adjust the work environment in any special way. When asking about any specific support or adjustments in the workplace for persons with ASD, young adults as well as their mothers would admit that there are not any.

At the same time young adults shared openly the ways they were overcoming the difficulties related to ASD. The most important strategy was to ask for help to others. The strategy was taught to them during special lessons they received during general school with psychologists and other professionals.

Already in my childhood, when I was diagnosed with all this, I was immediately taught there all the most important things that must be taken into account, for example, when you communicate with people, or you come across such a social environment where people, for example, can misunderstand you. (Jānis, 26).

In the future, support should be provided in the workplace for persons with ASD. Three out of four young adults and two mothers mentioned that it would be very helpful if there would be experienced mentors provided for young adults with ASD during the first work years. The mentor should be a person who can be trusted, who does not talk much about the problems of the young person or the special status, but rather assists in all cases.

Discussion

High unemployment among young adults with ASD has been repeatedly highlighted (Roux et al. 2013, Scott et al. 2019). Young adults with ASD are among the least likely of all young adults with disabilities to have a paid job (Newman et al. 2011). Although disclosure of a having ASD can be a vulnerable one, disclosure can inform others about how to appropriately handle it: how to support and help a person with ASD, to promote better integration in the work life, ensure necessary accommodation, and create an inclusive culture at the workplace. It can help a person with ASD fulfil his work duties and keep the job. The disclosure of person’s autistic status can help to provide all necessary support and workplace accommodations for both entering the job and keeping it. However, disclosure should make a situation for a young adult better, not worse; many people with autism generally report negative outcomes from disclosure (Thompson-Hodgetts et al. 2020).

Our research tended to answer two research questions: whether or not young adults with autism choose to formally disclose and verify their ASD status to the employer; and what are the reasons behind making such a decision? Although the research questions cannot be answered fully with such a small, specific sample, never the less the results provide some very important information. Addressing the first research question, it can be concluded that young adults often do not disclose that they have ASD to both co-workers and employers. However, at the same time they should be ready to disclose it if they were asked about it. As explained by other research, young adults with disabilities are ready to disclose to co-workers with whom they were comfortable. Also, workplace culture can be one of the most important factors in how disclosure is handled, including whether the disclosure is required at all (Schwartz et al. 2022). However, young adults seems do disclose their ASD status to close friends. The results are somehow similar to previous research as most commonly individuals with ASD do not disclose their status at workplace, but disclose it to friends (Huang et al. 2022).

A young adult’s decision not to disclose, as revealed in our study, is fully supported by their mothers. All mothers said that it should be their son’s independent decision to disclose or not. The full support that individuals with ASD experience from their families has been acknowledge by research previously (Romualdez et al. 2021b). However, we know from other research that people with ASD and their families can experience stigma (Kinnear et al. 2016). Mothers therefore can be very selective in deciding to disclose or conceal to protect their children (Eaton et al. 2017). In their answers, mothers therefore were not very consistent. As they were explaining, disclosing ASD can in theory significantly affect work-related opportunities for people with ASD.

In the research there are represented divergent considerations and perspectives on disclosure of ASD and of outcomes of disclosure (Thompson-Hodgetts et al. 2020). It seems that our research representing some Latvian young adults’ perspectives about disclosure of ASD is that it is harmful, not helpful. Only one young adult considered revealing the status of ASD to his employer in the future. He is ready to do that because he considers his ASD less severe, so people in his workplace most probably will know in the future that it is not so problematic.

Regarding the second research question, our participants mentioned four main reasons not to disclose. First, young adults did not want to be treated differently; they want to be perceived as ‘normal’. Such results can be explained by Selznick (2014) idea of ‘passing’ as ‘normal’. All four young adults wanted to enter the work life as a ‘normal’ person.

Second, they feared social stigma. They were afraid that they would be judged and treated unfairly because of their ASD status. These results coincide with other research, which shows that adolescents and adults with autism are reluctant to disclose their diagnosis due to perceived negative outcomes and stigma (Thompson-Hodgetts et al. 2020, Huang et al. 2022) or fear of negative perception of ASD (Romualdez et al. 2021b). Probably such fear also relates to the fact that disclosure of ASD can trigger both positive and negative responses to one’s work situation by those involved (Johnson and Joshi 2016).

Third, they did not feel there could be any benefits by disclosing the status of ASD to their employer. This coincides with previous research claiming that a decision to disclose ASD status to the employer relates directly to the perceived level of support and accommodations they can have (Thompson-Ebanks and Jarman 2018, Schwartz et al. 2022). Research suggest that the context (how safe it is to disclose) and potential benefits of disclosure both are very important factors to disclose (Romualdez et al. 2021b, Love et al. 2023).

Finally, not to disclose the ASD status was explained by the fact that it is much more important to explain to an employer the limitations of each specific young person with ASD has and how to overcome them rather than simply focusing on the label by informing about ASD diagnosis.

There were other results gained from our research. For example, all four young adults were still living with their mothers. This seems to be a growing trend for many families living with an individual with a disability (Graetz 2010). Also, we agree with other researchers who have been encouraging to make more research on how disclosure may be best accomplished for those on the autism spectrum and for employers to consider not simply focusing on the label itself (Davidson and Henderson 2010).

Limitations

The main limitations of the current study is small sample size. At the same time, it is important to mention that the difficulty in finding respondents is a function of ASD being a relatively new diagnosis in Latvia. Up to about 20 years ago, ASD was diagnosed in a very small number of children, so there are possibly relatively few young adults who can identify themselves as having ASD at this stage. One of the respondents (male, 26 years old) explained that he was the first one in Latvia who had an Asperger Syndrome official diagnosis at that time. As stated earlier, the sample included only male young adults with ASD and their mothers. Considering it, the experiences of our participants may not apply to all autistic people.

Conclusion

Our research was a rather small study with an aim to explore whether or not young adults with Autism Spectrum Disorder, job seekers and employees with strong language and intellectual abilities, choose to formally disclose and verify their ASD status to the employer and what were the reasons behind making such a decision. The results reveal that in our small sample young adults do not disclose that they have an autism to both co-workers and employers; at the same time they are ready to disclose it to close friends outside the workplace. All mothers fully supported their son’s decision not to disclose. In addition, four main reasons for not disclosing the autistic status emerged. First, young adults did not want to be treated differently; they want to be perceived as ‘normal’. Second, they feared social stigma. Third, they did not feel there can be any benefits by disclosing the autistic status to the employer. Finally, it is much more important to explain to the employer what the limitations of each specific young person with autism are and how to overcome them that to just inform about her or his ASD status. The young adults named the condition under which they would be willing to disclose their autism status: there would need to be sufficient employer knowledge and deep understanding about ASD’s presence and impact on the workplace. Also, it would help the young worker significantly if there were a mentor (officially appointed person) at the workplace who would introduce the young person to work. The study also revealed that the knowledge, skills, and competences acquired at school by young adults are important. These abilities would help to compensate for the difficulties that are characteristic of ASD in the workplace. There is a clear need to carry on our research in the future.

Disclosure statement

No potential conflict of interest was reported by the authors.