Driven by purpose,weary in pursuit: Exploring competitive employment for autistic adults

Abstract

Background:

Autistic adults are notably underrepresented in the mainstream job market, with only 20% of them worldwide engaged in competitive employment. This underrepresentation carries significant societal and welfare costs. In our study, we explore the impact of competitive employment on autistic adults.

Objective:

We examine the dynamics of personal resources, job demands, resource losses, and resource gains within the context of adult autism and competitive employment. We seek to comprehend the motivating factors related to work and the prerequisites for its sustainment, joining the theoretical frameworks of Job Demands-Resources and Conservation of Resources.

Methods:

We conducted in-depth interviews with eight adults with autism who are employed in competitive roles. Thematic analysis was employed to identify categories and themes, further analyzed using inductive coding.

Results:

Competitive employment was associated with resource gains, including feeling of mastery, improved self-esteem, and enhanced social connectedness. However, participants also reported elevated post-work fatigue as a job demand. Managing post-work fatigue required personal resources, such as stress management strategies and adequate recovery time.

Conclusion:

Our findings highlight the potential of competitive employment to enhance the well-being among autistic adults. To realize these effects, both personal resources and a supportive work environment are crucial.

Keywords

autism employment qualitative research burnout fatigue

Introduction

Competitive employment positively impacts overall health, financial independence, and self-esteem (Schaap et al., 2023; Urtasun & Nuñez, 2018). Work can satisfy basic human needs such as autonomy, competence, and social connectedness, increase financial independence and improve social status (Schaufeli & Bakker, 2004; van Rijn et al., 2016). Despite the universal desire for competitive employment, only 20% of people with autism spectrum disorder (ASD) currently hold such positions worldwide (Chen et al., 2014; Gal et al., 2015). This concerning number is further compounded by an increase in ASD diagnoses, attributed to advances in diagnostics and heightened awareness in school and society (Cakir et al., 2020; Gillberg et al., 2006; Hedley et al., 2017). The worldwide prevalence of ASD is approximately 1% of the population (Helles et al., 2017; Lai et al., 2019).

Accessing the job market poses significant challenges for many autistic adults, resulting in recurrent periods of unemployment that detrimentally impact mental health, financial independence, social status, and self-esteem (Bury et al., 2019; Hedley et al., 2019; Maras et al., 2021). The connection between unemployment and negative health outcomes such as depression, suicide, and somatic sicknesses is well-established, underscoring the importance of making competitive employment accessible to autistic adults (Maier et al., 2006; Milner et al., 2013; Ringbom et al., 2022). When transitioning into competitive employment, social aspects emerge as challenging for autistic adults, impacting overall well-being (Bury et al., 2021; Hayward et al., 2020).

One challenge is masking, the attempt to disguise autistic traits, and it has been repeatedly highlighted as a major stressor in the lives of autistic adults; however, its connection to employment is yet to be explored (Alaghband-rad et al., 2023; Miller et al., 2021). Chronic exposure to stressors, coupled with limited resources, increases the likelihood of burnout (Aronsson et al., 2017; Demerouti et al., 2001). For autistic individuals, autistic burnout describes the reaction to living in a world primarily suited for people without autism. It is characterized by mental and physical exhaustion, interpersonal withdrawal, and symptoms of reduced social and adaptive functioning with an increase in autistic traits (Higgins et al., 2021). Autistic burnout is described as a state of energy depletion, which results from a dysfunctional interplay of personal resources, demand, mental strain, and well-being across micro-, meso-, and macro-contexts (Mantzalas et al., 2022). While more empirical support for autistic burnout models is needed, its significance persists, as many autistic adults, whether employed or not, experience stress-related disorders and suffer from fatigue (Arnold et al., 2023; Higgins et al., 2021; Raymaker et al., 2020).

Distinct from non-autistic burnout, symptoms among autistic adults vary concerning stressors and potential treatments (Hayward et al., 2020, 2022; Mantzalas et al., 2022; Tomczak et al., 2021). More empirical evidence on what enables autistic adults to maintain employment and stay healthy is needed, contributing to understanding the mechanisms of burnout symptoms among autistic employees. Work can be both a risk factor for increased risk of burnout, but also a resource to prevent burnout (Johnson et al., 2020; Sundar & Brucker, 2021). This study aims to contribute empirical evidence to understand the dynamics of competitive employment for autistic adults, drawing on the strengths of the Job Demands-Resources (JD-R) theory (Bakker & de Vries, 2021; Demerouti et al., 2001) and the Conservation of Resources (COR) model as outlined by Hobfoll (2011, Hobfoll et al., 2018). While JD-R theory aims at explaining burnout, the COR model focuses on motivation.

The JD-R theory, as described by Demerouti et al. (2001), posits that job demands entail aspects of a job requiring effort associated with physiological or psychological costs. Burnout, according to the JD-R, results from high job demands coupled with low levels of resources. Resources are defined as external or internal aspects that reduce work demands, stimulate personal growth or are functional in achieving work goals (Demerouti et al., 2001, 2010; Schaufeli, 2017). Personal resources such as self-efficacy and optimism can buffer relationship between demands and burnout (Schaufeli, 2017; Schaufeli & Taris, 2013). By contrast, job demands are job aspects that require physical or mental effort and are thus associated with physical and psychological costs. JD-R theory, supported by ample evidence (Lesener et al., 2019; Schaufeli, 2017; Schaufeli & Taris, 2013), has been applied in creating a theoretical model of autistic burnout, adapting resources and demands to better fit the experiences of autistic adults (Tomczak & Kulikowski, 2023). The JD-R theory is valuable for explaining an individual's overall risk of burnout, whereas the COR model provides a dynamic perspective, helping understand the motivational aspects of competitive employment for autistic adults (Higgins et al., 2021).

COR model (Hobfoll, 2011) posits that humans strive to protect and acquire valuable resources, with work satisfying basic human needs of social connectedness, autonomy, and self-esteem. Motivation results from a dynamic process of protecting against resource losses and trying to make resource gains. Resources are anything a person finds valuable (Halbesleben et al., 2014; Hobfoll et al., 2018). According to the COR model, the impact of resource losses is more significant than that of resource gains. Resource loss can trigger spirals of further resource losses, potentially leading to a state where an individual is deprived of essential resources (ten Brummelhuis & Bakker, 2012).

Personal resources such as high self-efficacy and optimism, on the other hand, make the acquiring of resources more likely (Gallagher, 2012; ten Brummelhuis et al., 2011). Both the COR as well as the JD-R framework have been used to model needs of autistic adults in acquiring jobs. Following this line of research, we apply both models as theoretical frameworks for understanding the role of competitive employment for autistic adults in our study (Hayward et al., 2019, 2020; Tomczak et al., 2021). Our study seeks to explore the demands faced by autistic adults in competitive employment and the resource dynamics associated with their successful participation in employment. To achieve this objective, we conducted in-depth interviews with autistic adults engaged in competitive employment and performed a thematic analysis of the collected data. This analysis serves as an empirical basis for expanding our understanding of employment experiences among autistic adults.

Method

Ethics approval was obtained from the University in Hagen Ethics Committee (EA_603_2022, September 2022). Participants were recruited through autism-focused networks, social media (e.g., Facebook groups of autism networks), and emails via autism networks in Germany and Sweden (e.g., Bundesverband Autismus, autismförbundet). The study included only adults with a confirmed ASD diagnosis above 18 years without intellectual disability engaged in competitive employment.

Participants were asked to provide the date when they received their clinical autism diagnosis, and by which profession (e.g., psychiatrist or clinical psychologist). Only those participants who could provide a trustworthy statement about when and by which profession they had received their ASD diagnosis were included. As a proxy for screening for intelligence, successful completion of vocational training or successful completion of secondary school was used. Exclusion criteria applied to those not engaged in competitive employment or lacking a confirmed diagnosis, for example participants who had self-diagnosed but not received a clinically confirmed ASD diagnosis. Recruitment spanned three months, from December 2022 to February 2023. Interested individuals contacted the first author via email, receiving a personal letter detailing data safety, study aims, and interview topics. Participants were informed of the voluntary nature of participation and the ability to terminate interviews at any point, and that interviews were audio-recorded, transcribed, and anonymized, with original recordings deleted after transcription. Participants received no compensation for their participation. Participants were interviewed alone without others present.

The first author scheduled interview appointments via email, with one reminder for non-responders. Interviews were conducted in January and February 2023. At the interview's onset, participants were reminded of the study's voluntary nature and their right to withdraw consent. Audio recording, utilizing Zoom on an ASUS laptop, was agreed upon before interviews. Transcriptions, conducted by the first author, involved anonymization and destruction of original recordings. The first author, a clinically trained psychologist experienced in working with autistic adults, conducted all eleven interviews. Interviews lasted between 35 and 45 min in length, four of them were conducted in German and seven in Swedish. Two interviewees could not provide the required information on their autism diagnosis and were omitted from the dataset, and a third worked self-employed and was also omitted, resulting in a dataset of eight interviews.

During the interviews, participants were first asked eight closed questions about personal characteristics and work profile (e.g., age, length of employment, area of work). Participants were then asked open-ended questions about their past and present work experiences, identifying factors influencing employment. Interview guidelines were developed drawing on topics identified in previous research (Corbière et al., 2014; Johnson et al., 2020) and were adapted to fit the target group. An interview guideline ensured data consistency, yet interviewees were encouraged to delve into their thoughts, feelings, and actions at different employment stages: pre-employment, the first six months on the new job, and beyond. Participants were also prompted to highlight the support they received or desired during these phases. Finally, participants were invited to give recommendations for both employers and job-seeking fellow autistic adults. The interview guideline is available in the Appendix.

Data analysis

Prior to analysis, the first author anonymized and transcribed all records, and reviewed for accuracy. Participants infrequently used filler words, which generally served to emphasize points or convey emotions, and were thus retained in the original transcripts. Transcripts underwent proofreading and were subsequently imported into the Maxqda software for coding and analysis. The first author transcribed and coded all interviews.

For conducting the thematic analysis, we followed the recommended procedures outlined by Coates et al. (2021) and Braun & Clarke (2006). Employing an inductive approach, we initially engaged in coding and subsequently derived categories from these codes, which were then organized into overarching themes. Initial coding and analysis were based on direct quotes. The aim of inductive coding is to generate a framework based on the identified themes. Three to eight categories are recommended per theme with a maximum of eight themes (Thomas, 2006).

The third author reviewed transcripts and coded them independently of the first author. Disparities in coding between the authors were deliberated until a consensus was reached. Four major themes were identified and arranged in a framework, while recommendations to employers and other autistic adults were identified as a theme outside the framework. The first author provided all translations of quotes and transcripts.

Results

Participant characteristics

Participant characteristics are provided in Table 1. The sample consisted of six Swedish and two German participants. Participants were employed across various sectors, including teaching and furniture upholstery (refer to Table 1 for details). Six participants had taken multiple university courses without earning a degree. All participants reported that they had encountered challenges in their formal school education, primarily due to social reasons. Two participants left school prematurely but later completed their degrees, two participants held multiple university degrees. Half of the participants worked full-time, and the other half worked part-time, with weekly hours ranging from a minimum of 20 to a maximum of 40 plus overtime.

Table 1.

Participant characteristics, N = 8.

Acronym	Age	Gender	Occupation	Length employment	Work branch	Disclosure	Prior employment	Living arrangement
P1	38	F	Customer service	0.5 years	Cars	No	yes, different area	married, living together
P2	34	F	Project assistant	1 year	Non-profit organization	Yes	no, unemployed	partner, living alone
P3	55	F	Secretary	7 years	Education	No	yes, different area	married, living together
P4	23	F	Nurse	0.5 years	Hospital	Yes	no, school/ training	living alone, no partner
P5	24	F	Medical assistant	1 year	Medical care private	Yes	yes, same area	partner, living alone
P6	52	F	Teacher	12 years	School	No	no, school/ training	married, living together
P7	50	M	IT software developer	2 years	Music	No	no, unemployment	partner, living together
P8	34	F	Upholsterer	1 year	Crafts	Yes	no, school/ training	living alone, no partner

Note: F (female), M (male). For reasons of increasing anonymity of the participants, country of residence was deleted. Country of residence of all participants is known to the first author. By disclosure, disclosure of ASD diagnosis at the workplace is meant.

Interviews

Word count showed that participants’ words spoken during interviews varied between 2185 and 3500 words (M = 2589, SD = 789), which shows that all participants engaged in the interviews and provided detailed descriptions, though with varying length. Table 2 shows the source and frequency of the categories and themes across interviews.

Table 2.

Themes and categories, frequency and references as suggested by thematic analysis from in-depth interviews with autistic adults in competitive employment, N = 8.

Theme	Category	Frequency	Reference
Workplace context	Physical work environment	8	30
	Conflict-free workspace	8	29
	Mentor	7	31
	Work structure	8	33
Coping strategies	Disclosure of autism diagnosis	8	31
	Masking	8	28
	Stress management	8	29
Resource gains	Social connectedness	8	23
	Self-esteem	8	34
	Mastery	8	25
	Income	8	20
Resource losses	Household	7	29
	Leisure activities	6	22
	Post-work fatigue	8	54

Note: Frequency refers to the number of interviews where the category was mentioned. Reference refers to the number of times the categories were mentioned across all interviews.

We identified four main themes with fourteen subthemes. The main themes were workplace context, coping strategies, resource losses and resource gains. The themes were assembled to a framework (see Figure 1). Our data suggests that the specific workplace context plus individual coping strategies lead to resource gains and losses from employment. Recommendations to autistic adults and employers were not seen as part of the framework and these results are reported at the end of this section.

Figure 1.

Framework aligning themes and categories as suggested by the data from in-depth interviews with autistic adults in competitive employment, N = 8.

Workplace context

Concerning the workplace environment, participants often emphasized the significance of having a mentor and working towards a conflict-free atmosphere. The ability to exert some degree of control over the physical work environment was consistently identified as a factor crucial for well-being in the workplace. Additionally, the organization's work structure was identified as another important contextual factor that contributed to the feasibility of work.

Physical environment

The physical work environment, representing the surroundings where work occurs, significantly influences well-being and work maintenance. Many interviewees emphasized the importance of having control over at least a portion of their physical work environment.

“I have my own measurement room, the right one. That's mainly where I measure and if someone takes my cables away, draws them out, or puts them away in the wrong place, then I freak out. That's why nobody else enters there anymore.” (P5)

“That's quite a lot of noise. It's different sounds. It can be beeping sounds, from machines beeping, or colleagues talking and patients talking. […] It's clear that it's disturbing, but where I'm sitting on my computer and documenting, it's like a little expedition, you can close the door if you want.” (P4)

“I have more control on the days when I am alone in my workshop. When others are at home sick or on assignment or off. Then I have the lights dimmed and no radio on. […] But these times they are not in my hands.” (P8)

Working from home provided a solution for some participants, allowing control over the work environment on certain days each week.

Work structure

Work structure in our interviews referred to the clarity of tasks in their content, range, and order. The importance of work structure in sustaining employment was emphasized. Multiple participants highlighted that, due to their preference for a clearer structure, workplace procedures had been clarified and enhanced.

“It felt like people weren’t ready to be asked. But I’ve pushed it until I’ve got a clear role. I can limit myself now and say, this is my thing. This is my task. It has worked well. There is clarity with what [own name] does.” (P7)

Conflict-free work

Conflicts here refer to interpersonal conflicts. Several participants reported difficulties in handling conflicts with supervisors or colleagues. Many shared experiences of how past workplace conflicts led to either their decision to resign or their dismissal from their jobs. Friendly and, to the extent possible, conflict-free workplaces were mentioned as important for the sustainability of work.

“It has been very difficult on the labor market […]. It's always been some kind of conflict and then I've had to stop because of various reasons that I don't really have [pauses] where no one has explained to me why, what has happened.” (P2)

“All of us at school hold a friendly tone. I get energy from giving positive feedback to pupils and colleagues. I don't feel good at work when there is any conflict at work. When someone has misunderstood me at work, or I have misunderstood someone. And I can't tell when someone is angry or stressed. And if someone is in a bad mood, then I automatically think that it is my fault that that person is angry. […] If someone gets angry or is stressed, aggressive, then I suffer from anxiety.” (P6)

Mentor

A mentor in its broadest sense can be an officially assigned or unofficial contact who helps navigate professional matters. Having one person to trust on, someone who participants felt they can be themselves was mentioned as an important factor that made work life sustainable.

“Then I have one more person in my team. He is the only one who knows that I have autism. And because he has been very open with me about his problems, I have opened up and we have been able to talk and to discuss and debrief a bit when I think things are difficult. And I think that's good. And it has made me feel like I can pretty much be myself at work anyway.” (P7)

“I have been there so many years. It became more of an informal mentorship. […] There are two women who each own their own company. And these two women have become my mentors, where I can debrief when something is extra difficult. They have a very open attitude where I can be vulnerable.” (P8)

Coping strategies

Coping strategies are strategies employed to navigate difficulties. Coping strategies mentioned included masking, stress management, and taking a decision on whether to disclose diagnosis.

Masking

Several participants described that they commonly employed masking strategies, such as smiling or feigning interest in small talk. These strategies were considered essential for navigating workplace interactions but were noted as highly energy draining.

“I have memorized stock sentences from the old office, which I continue to use. […] Definitely not doing anything with your hands all the time, looking at clients’ noses, such things. Be friendly and polite, always smile, always say ‘yes, I’ll do it’ first. […] Yes, and definitely act like a normal person.” (P5)

“Listening to what others say, not interrupting. And [laughs] pretend to be interested. So sometimes I am too but … I really take away myself. Just being a nice person.” (P3)

Stress management

Stress management strategies are actively used to prevent stress and included strategies before, at, and after work. Holding strictly to one's routines on training, food, and sleep was seen as pivotal by many for being able to cope with work:

“I train quite a lot now. We have such home training; you follow an instructor online. […] Trying to keep my diet, so I feel good. I know that I need to sleep well and that I need to do those things to feel good.” (P1)

“I have a special schedule. So, on Wednesdays I practice yoga […] and on Tuesdays and Sundays in the evening, I do gym sessions for an hour. […] And on Fridays in the morning, my husband and I go to an outdoor gym and do strength training. Very structured. […] Every other Thursday evening we clean so we have the whole Friday for recovery and rest.” (P6)

While being at work, participants mentioned different types of strategies for coping with work stress. Several participants mentioned avoiding stressful situations, such as meetings or situations with a lot of stimuli:

“And then I ran away from the office for half an hour because it was really too much. It was extremely loud, and the patients wanted so much.” (P5)

“Regular meetings […] sometimes I skip. Then I say excuse me, I know I'm supposed to be here, but I don’t feel this way.” (P3)

Some participants mentioned mentally preparing for the next workday to avoid stress. This involved creating to-do lists at home or mentally reviewing tasks before bedtime.

“Every night when I go to bed I plan tomorrow. And then I write down what is most important and so on. And in what order should I do it. So, I know exactly what to do first at work.” (P3)

Disclosure of diagnosis

Participants who chose to openly discuss their ASD diagnosis with colleagues or superiors expressed that they expected diagnosis disclosure to lead to better understanding of their unique perspectives and needs. They believed it was necessary to share their diagnosis because they were seeking workplace accommodations.

“I am a person who wears her feelings on the outside. I felt that it will be easier for me if I tell them that I have autism, because I can’t ask people to be in a certain way towards me if they don’t know. So, I felt that I win by being honest and say that I have it.” (P4)

Several participants described that they opted to disclose their diagnosis after some time in their workplace, rather than initially. They explained that they felt secure enough to be open about it after a period. Others felt compelled to explain and disclose their diagnosis following specific incidents or situations.

“No, I wasn't that open then … but now, with my new supervisor that I got. I was more open to her about my difficulties and such. I said that my autism may mean that I need to take a few more breaks.” (P1)

Those who had decided not to disclose their diagnosis reported that they felt that they feared drawbacks or being confronted with stereotypes about autism.

“I felt that I was so in need of getting away from the old workplace so I didn't want to bring up anything that could jeopardize that I would be prioritized away.” (P7)

“There are so many preconceived notions of what it is, […] either: How ridiculous, do you have it too, everyone has it soon, or: Aha, what are you having a hard time with then – almost as if you were strange.” (P3)

Resource gains

Participants described that because of their employment, they had gained self-esteem, feeling of mastery and social connectedness.

Self-esteem

All participants described that their current work had engendered a more favorable self-esteem. Some participants attributed a therapeutic effect to work through which they had personally grown and overcome earlier obstacles:

“I think I've really grown, developed. I have found my way back to my previous creative interests. […] And have gained some kind of faith in myself even though it can be very up and down.” (P2)

“I had such social phobia and such before. […] I had anxiety before every call and had such panic attacks when there was so much stress. But I learned to deal with it over time. So that I feel that I have won a lot myself with this job.” (P1)

“I'm not quite 100 now either but I'm in a better place now than I was then. When I started then I had almost lost hope, you could say.” (P1)

For many, the heightened feeling of self-esteem was closely connected to a feeling of mastery.

Mastery

All participants described that feeling being in control of their work and having the skills to fulfill their work roles made them proud, no matter if participants worked in areas linked to their formal education or not.

“I've started to trust my own abilities more […]. And then in my professional role, I feel very competent. And my managers also even ask me how I had solved things, and I can help customers. And just pride in handing over a project to a customer who will be very satisfied.” (P8)

“I notice more that I am good at talking to people, good at listening. I have noticed that it is one of my strengths.” (P1)

“My work comes right after my fiancé. I actually define myself through my work because that's what I can do. If I didn't have my job, then I wouldn't be able to do anything, then I would be … not nobody, that's a wrong term, but then I wouldn't be able to take advantage of what I can do.” (P5)

Income

Participants mentioned that earning their own money had been a motivating factor for accepting their current job offer. However, it's important to note that paid employment didn't necessarily lead to an improved financial situation for everyone. Several participants reported experiencing a decrease in their overall income compared to their previous circumstances. This was often due to the loss of community benefits like unemployment or sick-leave compensation upon taking up employment. Additionally, many participants mentioned struggling with fatigue, which hindered them from working full-time. Moreover, some felt they were underpaid relative to their qualifications and experience and felt that they had been disadvantaged in salary negotiations, not knowing how to behave appropriately in a salary negotiation.

“For my employment contract, I would have needed support with the negotiation. Because I get paid very poorly for what I have competency for. It just went too quickly then.” (P5)

Social connectedness

Participants mentioned that connecting with others through their work was a key factor that contributed to an improved quality of life. Several participants reflected upon that this had been a surprising discovery for them, that being part of a (work) community felt meaningful.

“I notice if I haven't worked for a while and then I come back to work, then I notice that the little social I get at work is very significant. And I feel that having a job makes life a little more meaningful.” (P6)

“If I'm not working and I'm at home, then I don't have much contact with others. And even though I find it hard to be social, I have started to feel that I need it.” (P4)

“I have somewhere to go every day where it matters that I'm there. And this dose of socializing. Not just sitting at home but having the feeling that I can make a difference. I don't get isolated in the same way.” (P7)

While all participants stressed the importance of their jobs for them in their lives, they also reported work-related negative effects.

Resource losses

The overarching topic relating to resource loss was managing post-work fatigue. Other categories frequently mentioned were compromises related to managing household chores and free time activities. Participants reported these resource losses as events directly or indirectly connected to post-work fatigue.

Post-work fatigue

Fatigue after work was referred to as tiredness, and participants described a feeling of complete depletion of physical, mental, and emotional energy. All participants expressed the need for post-work recovery, which lasted from one hour to the entire remainder of the day. Several participants amended their work scheme so they could rest the day after. They all emphasized that, for recovery, they needed time with a clear reduction of stimuli, preferably alone.

“I can go to bed and sleep after work. I don't do much in my spare time. I don't exercise, I kind of don't have any friends, so I don't have any friends. I'm mostly at home. When I get home, I either sleep straight away or I lie down on the sofa and watch some series.” (P2)

“I'm always tired. I need much recovery after work.” (P3)

“I try to feel what I manage. Can I go shopping? And often the answer is no. Can I take care of the dishes? Very often when I get home, I walk my dog and then I lie on the sofa. And just play some TV game that I can get into a lot. Like a bubble. And shut out as much as possible of other sensory impressions. That recovery is always needed.” (P4)

Participants reported that fatigue after work had repercussions across various aspects of life.

Household

Participants highlighted that because of post-work fatigue, they often found it extremely challenging to handle household chores like cleaning, shopping, or cooking. Many mentioned their partners as support, noting that managing household tasks became seemingly impossible when juggling work responsibilities.

“I have a fantastic husband who is truly so amazing. He cooks all the food at home. I can't manage to cook when I get home from work. […] The battery is empty when I get home, and I can't manage anything. So, he cooks.” (P6)

“I don't cook during the week because it's too exhausting. During the week, I eat oatmeal, bread, cucumber, cream cheese, and cooked ham. And coffee and water.” (P5)

Tasks like cleaning and shopping were frequently perceived as unmanageable because of post-work fatigue.

“There is basically no energy at all for home and household chores and having energy to take care of everything. All normal everyday life. So, everything gets delayed in the home. My partner has quite severe ADHD, so he has quite the same problem as me.” (P8)

Apart from household responsibilities, participants also described how post-work fatigue spilled over into other aspects of their lives, for example leisure activities.

Leisure activities

Several participants reported that because of post-work fatigue they had reduced other activities outside work:

“I enjoy working with those at work. But my energy level means that I don't do much in my spare time. Many weeks that I can't bear to meet anyone because of my energy after work and during the weekend. So, I need more recovery during the weekend and that means many weeks go by where I don't see other people. It has become more difficult to meet others after work.” (P2)

Several participants reported that post-work fatigue spilled over on their partnerships and, for some, their relationship to their children.

“I'm still exhausted from work […] And he still has this energy, and I don't have it anymore. […] And as a result, the quality time in our partnership decreases.” (P5)

“So, it can affect my free time and the family. That I simply don't have much energy. I can get very tired of sounds. So, my kids maybe feel like they need to tiptoe because I'm so sensitive to sound.” (P8)

Recommendations

Recommendations to autistic adults

Several participants stressed the value of doing a job that is connected to a strong interest. Several participants recommended to first identify what one's passions, one's special interests are:

“Especially if you receive your diagnosis in adulthood, as I have. Then you spend many years thinking, what is wrong with me. And it eats away a lot of self-esteem and self-confidence. […] You need to find your strengths. Often when you get diagnostics, you can get guidance there.” (P7)

“They should bet on what they dream of. Instead of going the safe route that I thought at first was the best. So, invest in what brings them joy. Where they have their strengths.” (P2)

Other recommendations included asking openly for amendments at the workplace or at the educational institutions, for example being allowed to take more breaks or to study at slower pace. Several participants recommended to disclose the ASD diagnosis.

Recommendations to employers

Participants encouraged employers to be open-minded, courageous and employ people who work different compared to non-autistic people. Several participants recommended that employers increase their knowledge about autism, but stressed that often it would be good enough to simply be open-minded:

“Don't be afraid that someone works a little differently. See the value in the fact that someone can be very passionate about their work. Even if they can't understand what it's like to be autistic, they can still be open and try to understand that person. That the person has different needs than others without a diagnosis. But that the person has a lot of value to contribute if allowed to do it on her own terms. That you miss out on so much if you exclude everyone who has special needs.” (P1)

Discussion

Participants in our study described that competitive work enhanced their life quality through heightened social connectedness, feelings of mastery and self-esteem. However, work also contributed to feeling extremely fatigued. This, in turn, affected leisure time activities, household duties, family, and friends. Themes and categories derived from the interviews will be discussed in the light of JD-R theory and COR model.

Job demands-resources theory

Our findings align with Tomczak and Kulikowski's (2023) adaptation of the JD-R theory for autistic adults, emphasizing the importance of work structure, mentor support, control over the physical work environment, and a conflict-free workspace as job resources. Participants further identified clarity in work tasks, supportive mentors, and a conflict-free environment as resources for sustaining employment. Contrary to Tomczak and Kulikowski's (2023) suggestions, autistic traits like high attention to detail were not universally perceived as strengths by our participants. Instead, these characteristics were seen as reducing work pace and were sometimes viewed as disadvantages.

Coping strategies, such as the flexible use of masking, stress management, and disclosure choices, emerged as critical personal resources for managing work-related fatigue among the autistic employees in our study. Masking strategies have been linked to fatigue, increased anxiety, psychological distress, and, potentially, suicidal ideation (Alaghband-rad et al., 2023; Miller et al., 2021). Our data supports the idea that, while coping strategies represent personal resources, they also entail associated costs, contrasting with the conventional JD-R theory (Bakker & de Vries, 2021). Notably, Tomczak and Kulikowski (2023) did not incorporate coping strategies into their model.

Participants varied in their descriptions of job demands, with all consistently reporting post-work fatigue as the greatest challenge. They reported core symptoms of fatigue, interpersonal withdrawal, and a significant reduction in their functioning in essential areas, such as household tasks, childcare, and social relationships. Notably, our participants described high fatigue levels without the emergence of cynicism or reduced professional efficacy, typical of occupational burnout (Grossi et al., 2015; Maslach et al., 2001; van Dam, 2021).

Participants’ descriptions of post-work fatigue fulfilled criteria for autistic burnout as suggested by Higgins et al. (2021). Contrasting with recommendations for non-autistic individuals, such as participating in active non-work-related activities to alleviate fatigue (Bennett et al., 2018), participants emphasized the importance of rest and solitude after work. Recovery over time is an aspect integrated into later JD-R theory (Bennett et al., 2018; Demerouti et al., 2012; Trougakos et al., 2014). Our findings strongly support the idea that time is a crucial element in recovering from post-work fatigue among autistic employees.

All participants emphasized the explicit need for solitary time with reduced stimuli after work, which they described as going into their own bubble. The value of withdrawal for restoring energy aligns with the findings in Higgins et al. (2021) and Raymaker et al. (2020) studies on recovery from autistic burnout. While Higgins et al. (2021) warned for that social withdrawal risked leading to social isolation, our participants could possibly compensate for this risk by social interactions in their workplace. In summary, the JD-R theory, adapted for autistic adults in competitive work, proves instrumental in understanding and addressing post-work fatigue, emphasizing the importance of job resources and personal coping strategies for recovery.

Conservation of resources model

Participants in our study underscored the importance of work in fulfilling their fundamental needs for social connectedness, self-esteem, and a sense of mastery. These aspects were identified as valuable gains derived from their employment. Increased social connectedness was seen as a particularly valuable resource gain by several participants. Social connectedness has been understood as the opposite to loneliness – the higher social connectedness is, the lower loneliness (Stice & Lavner, 2019). Autistic adults feel lonely more often than non-autistic people, and loneliness is connected to negative health outcomes and reduced life quality (Schiltz et al., 2021; Umagami et al., 2022). In contrast, participants identified post-work fatigue and sensory overload at work as factors that made it difficult to engage in social relationships after work, necessitating a sensory retreat.

Participants in our study reported increased self-esteem and a sense of mastery as valuable resources gained through work. While people diagnosed with ASD generally have lower self-esteem (Arwert & Sizoo, 2020; Nguyen et al., 2020), our participants experienced a positive impact of work on their self-esteem. Mastery at work, associated with better recovery and reduced burnout risk (Bakker & de Vries, 2021; Bennett et al., 2018), was another significant resource gain reported. Participants attributed high personal value to these gains, particularly considering past struggles in their work life. From a COR perspective, these resource gains can be seen as particularly valuable in the light of prior resource losses (Gallagher, 2012). This finding may partially explain why, despite the exhaustive nature of work, it was perceived as making a meaningful contribution to their overall quality of life.

In contrast, participants also identified resource losses associated with work. These losses included post-work fatigue, difficulties in managing household chores and reduced leisure activities, including difficulties handling childcare and maintaining close relationships. In summary, the COR model indicates that resource gains, such as mastery, increased self-esteem, and social connectedness, are likely to hold high personal value for the autistic adults in this study, motivating them to seek strategies to address work-related demands and to try to balance resource losses.

Conclusion

Limitations of this study

This qualitative study relied on self-report by autistic adults in competitive employment exclusively. Selection bias can have led to a participation group of highly educated autistic adults who were satisfied with their current jobs. We are aware that this selection is likely to have occurred, and we are also aware that this can reduce the generalizability of our results. Further, our study targeted autistic adults with average intelligence and can have attracted those with good verbal skills. It is therefore unclear if our results are applicable for autistic adults who are more cognitively challenged.

Theoretical implications

Our findings support the value of combining the JD-R theory with a dynamic, motivational perspective as proposed by the COR model. This combined approach enhances understanding of the complex dynamics connected to sustained, competitive employment for autistic adults, and the multifaceted effects on their lives. Our findings not only align with but also extend prior theoretical research on burnout among autistic adults (Higgins et al., 2021; Tomczak & Kulikowski, 2023). They offer specific evidence that adds ecological validity to burnout models in the context of autism. The results add a motivational perspective to understand what makes work—despite being extremely exhaustive—meaningful on a very general, deeply psychological level for the autistic employees in our sample. In our study we showed that competitive work has the potential to satisfy basic human needs of social connectedness, mastery, and self-esteem. Beyond theoretical implications, our findings carry practical significance.

Practical implications

Findings from our study demonstrate that when autistic adults are offered appropriate work environments, employment can cause resource gains, such as a feeling of mastery, heightened self-esteem and feeling socially connected. These positive outcomes are contingent upon the presence of certain workplace conditions, including clear work structures, the availability of a supportive mentor, some degree of control over the physical work environment, and a conflict-free atmosphere. Importantly, these workplace adjustments are cost-effective, adaptable, and implementable in various work settings, contingent upon a fundamental requirement, as the participants in this study pointed out: employers’ openness to welcome employees who function differently.

Our results also emphasize the importance of coping strategies for autists, some of which are skill-based and teachable, such as stress management. Others depend on a supportive and inclusive work environment, particularly when it comes to decisions regarding disclosing one's diagnosis. Our results demonstrate that resource gains through competitive employment are attainable for autists, provided that workplace-related prerequisites are met, and employees can compensate for post-work fatigue.

Footnotes

Ethics statement

The study was approved through the Ethics Committee of University in Hagen, Germany, in September 2022 (EA_603_2022).

Author contributions

The authors confirm contribution to the paper as follows: study conception and design: Kerstin Erdal, Petra Gelléri; data collection: Kerstin Erdal; analysis and interpretation of results: Kerstin Erdal, Eva Billstedt; draft manuscript preparation: Kerstin Erdal, Petra Gelléri, Eva Billstedt. All authors reviewed the results and approved the final version of the manuscript.

Author note

Petra Gelléri is now at the Department of Psychology, Rhine-Waal University of Applied Sciences, Kamp-Lintfort, Germany.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Informed consent

Written informed consent was obtained from all participants before their participation in the study.

Acknowledgements

The research group thanks the participants who shared their experiences.

Appendix: Interview guide

1. How old are you?

2. When did you receive the diagnose autism and by whom?

3. How long have you been employed at your current employer?

4. What is your current job (in which business area)?

5. Which type of formal education do you have?

6. Before you started this job, what did you do?

7. Did you receive any help from someone prior to starting the job (e.g., employment agency, healthcare, friends, family, partner)?

8. How important do you rate the importance of your current job for yourself on a scale from 1 (very unimportant) to 10 (very important)?

9. Topic 1: Pre-job experience

When you think back to the time before you started your current job, what made you accept the offer?

Which expectations did you have, before you started your current job?

10. Topic 2: Onboarding experience

During the first weeks of your current employment, what worked well?

During the first weeks of your current employment, what worked less well or poorly?

11. Topic 3: Ongoing work experience

In which way does your work contribute to important goals you have?

Which areas in life have become more difficult since you started working in your current job?

12. Which recommendation would you give to other autists who are looking for a job?

13. Which recommendation would you give to employers who so far have not been hiring autists?

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