Episode 5: Autism & Employment - part 1

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No AI is used at any point in this podcast.

I will be speaking on a panel for the Power of Disability conference in Dublin on the 7th and 8th of February. This two-day online event will include discussions, presentations and feedback sessions encouraging students with disabilities to be leaders on their own campuses and will build practical skills on self-advocacy and constructive advocacy. Tickets are free for the online conference but spaces are limited so please book in advance if you plan to attend. You may be able to ask for a recording if you are unable to attend.

This podcast explores recently published research on a number of different neurodivergent types. This season I am talking about autism, and in this episode I will go over some recent research on autism in the workplace, and occupational factors for autistic people. This episode is split into two parts because of the amount of recent research I found on this topic. Unless otherwise specified, the research I have done for this and all episodes do not include those with intellectual challenges in conjunction with autism characteristics. While I will describe autistic characteristics in this episode, I also recognise that every autistic person will experience autism differently, and these are not specific to every person who identifies as autistic.

The Americans with Disabilities Act of 1990 refers to accessibility as the ability to reach, be mobile, be oriented in a place, to use and enjoy services, receive information, and participate in programs and activities in an equal, dignified, independent, and safe manner. Waisman-Nitzan, Gal and Schreuer (2021) note that while physical and sensory dimensions of accessibility and relevant accommodations for people with physical or primary sensory disabilities are well acknowledged, the additional dimensions of receiving information and participating in social activities and services have been regularly neglected. They state in their research that:

“successful integration in employment is a primary concern for many people because of its implications for their economic independence, personal identity, and development. Challenges associated with entering the workplace and obtaining a desired job are even greater for people with disabilities, who face stigma and negative perceptions regarding their ability to perform the job. Among the most disadvantaged groups in the employment arena are individuals with autism spectrum disorder (ASD), even when compared to individuals with other disabilities.” (Waisman-Nitzan, Gal and Schreuer, 2021, p.2)

They focussed their study on what they called Level 1 participants with autism, those who need support, but do not usually have intellectual disabilities. They expected to find an inability to “read between the lines”, understand directions, communicate appropriately, or follow unspoken social rules, and exhibit restricted repetitive behaviours that may hinder performance or be poorly tolerated in a competitive workplace. Participants reported stress at work, which may be explained by the gap between the social challenges and both their desire to develop social abilities required at work, and contemporary competitive labour market characteristics, like open workspaces, required teamwork, staff meetings, presentations, and ongoing feedback. The researchers noted a similar study where managers’ knowledge and awareness regarding autism resulted in employees experiencing reduced stress. The participants of Waisman-Nitzan, Gal and Schreuer’s study (2021) reported views that their work performance was affected by their insistence on sameness and inflexible adherence to routines, and expressed a desire to work in areas related to their specific and special interests, something that is obviously not always available in the labour market, and something I believe neurotypical people could also relate to. Reasonable adjustments are things that allow people with disabilities to have equal employment opportunities as long as they qualify to perform the essential job functions, and the required accommodations do not result in “undue hardship for the employer” (Waisman-Nitzan, Gal and Schreuer, 2021). Employers and coworkers are more prone to misunderstand people with nonvisible disabilities and avoid providing them with accommodations. A 2020 scoping review referred to in Waisman-Nitzan, Gal and Schreuer’s paper (2021) demonstrated the contribution of environmental accommodations, especially those that address relationships and personal support within the workplace, to the positive work experience of autistic employees. The issues that negatively affect autistic individual’s well-being in employment were researched by Hayward, McVilly, and Stokes (2018), who wrote that the extent to which some of these issues might be a function of gender or autistic traits, while controlling for potential confounding variables (e.g., education and age) are yet to be investigated. Gender could be an important variable given that other research suggests autistic women might possess ‘superior’ social-communication skills compared to their male counterparts. For women, ‘superior’ social-communication ability could moderate the effects of autism characteristics in the labour market. Still, gender could negatively impact labour market experiences for women generally, and especially for women with disabilities. They identified that some authors argued that gender inequality and structural oppression, for example, organisations that possess norms favouring men, may contribute to women’s under-representation in the workforce. This includes in full-time employment. Women are also over-represented in part-time and casual work. Thus, they may have limited access to the economic benefits provided by adequate employment.

In some adjacent research I found into fathers in the workplace who cared for their autistic children, Lien and others (2021) found that fathers described being part of supportive, well-resourced environments where knowledgeable colleagues helped with accessing services, and supportive bosses understood absences on short notice. Being able to work remotely and having flexi days that allow fathers to attend a child’s appointments reflected another layer of employee privilege. This may be an interesting area of future research as workplace perspectives of autism may change depending on whether the individual is a carer or autistic individual themselves negotiating supports from an employer. The researchers in this paper acknowledged that supportive, flexible, self-directed employment experiences may be unlikely for fathers with lower paying jobs, ethnically diverse fathers, or fathers with lower levels of education or those in jobs that entail stricter adherence to a time clock. It is important to note that I support parents of autistic children who need to ask for accommodations, as much as I support autistic individuals who ask for supports, and I include this research as a sidenote in that there may be a gendered aspect to asking for supports depending on who is asking and if they are a carer or not. More research would be needed to confirm this theory, of course.

Research from Spoor and others (2021) identified a growing number of supported employment programs that directly employ and/or improved employability of autistic individuals. Although research has demonstrated that these programs have benefits for autistic individuals, they found that few studies examined these programs within their broader organizational context, including the impact on other employees, for example co-workers and managers. This is an important gap, as sustainable autism employment depends on inputs from a large ecosystem, including other employees. The current research from Spoor and others (2021) attempted to fill this gap by examining employees’ attitudes toward their organization’s autism employment program. This study found that employees who were highly supportive of their organization’s autism employment program provided extra support to their autistic colleagues and spoke favourably about the program outside of work. Therefore, supportive employees can augment formal support services for autistic staff and facilitate greater inclusion and social integration of their disabled colleagues (Spoor et al., 2021). However, during the study some employees recalled negative attitudes about the additional work they perceived they had to do in order to support their autistic co-workers who were getting ‘special treatment’. Spoor and others (2021) recalled other research that found co-workers and managers in the Deutsche Bank internship program also made comments suggesting that working with the autistic interns took more time, ranging from repeating instructions to supporting their well-being, and that another study found that supervisors of autistic staff experienced demands on their time, resources and interaction styles that sometimes led to high levels of exhaustion. Spoor and others (2021) noted that perceived supervisor support may contribute to positive attitudes toward the autism employment program, and may also offset some negative effects of increased workload. It is my belief that in supporting disabled employees, and offering supports to all workers regardless of an official assessment and affirming the validity of a self-identified disability or support need, all workers can feel they are being supported and validated by an inclusive work ecosystem, not only those with a neurodivergence or physical disability.

Waisman-Nitzan, Gal and Schreuer (2021) identified that there is still a lack of evidence-based data regarding suitable and reasonable accommodations for autistic individuals outlined in the DSM-V (The Diagnostic and Statistical Manual of Mental Disorders, fifth edition), which means organisations lack accessibility policies that address the needs of autistic employees. Gemma North (2021) reported findings that only 16% of autistic adults in UK are in full time paid employment according to The National Autistic Society in 2016, and that 77% of autistic people want to work but cannot find employment. North (2021) found that autistic people are most likely to be ‘unemployed (without a job), underemployed (in jobs that underutilise their knowledge, skills and experience) and ‘malemployed’ (in jobs for which they are expressly unsuited) than the population at large. Research carried out on the Australian workforce indicates that autistic adults are ‘intellectually capable and educationally well qualified relative to the general population’, but also appear to be ‘under­represented in senior organisational roles’. North writes:

Owing to perceived deficits in her social communication, one autistic woman described being singled out and sent on a training program to improve her interpersonal skills. Men performing the same work with similar communication styles in her area were not. Autistic women expressed that they wanted to fit in but felt they could not in part because it felt unnatural and was exhausting for them. Like many autistic people, autistic women often find neuro-typical displays of caring such as sustained eye contact and small talk unnatural. Men who may or may not be formally acknowledged to be autistic, may be given leeway by colleagues for what is assumed to be a communication deficit in a way that their female coun­terparts are not. Building trusting relationships with colleagues and managers were consequently often identified as troublesome for autistic women (North, 2021).

North (2021) informs us that performing emotional labour, even if it is not part of their job description is often required of all workers. However, this often impacts on women more significantly who may be required engage more substantially in ‘emotional labour’ in both surface and depth ‘acting’ roles. Expectations of women traditionally include engaging by default and without complaint in unpaid care and subordination. In addition to their jobs, women are expected to be neat, make do and cause minimal irritation to others. Performing femininity correctly ensures unfavourable judgements of them are avoided. In addition to complying with unspoken gendered social rules, autistic women have the added task of making convincing neurotypical theatre. Autistic women who do not conform or exhaust quickly through trying to fit in may then render themselves an inconvenience or troublesome by their employer and colleagues. North (2021) reported that her participants emphatically agreed that autistic traits and in particular ‘stimming’ had to be hidden or suppressed at work. The autistic women in North’s study (2021) required plenty of time alone to concentrate on their work, but they also wanted and needed to be included in meetings, team discussions and also social activities at work. Contrary to many assumptions about what autistic people want, most participants suggested they did not want to work in complete isolation. There was sometimes the sense in the research that it was easier for employers to separate out the problem woman from the rest of the workforce rather than find a solution that was authentically accommodating for them. Employers addressed their needs not as an organisational or legal responsibility, but as an individual ‘problem’. Feminist theorist, Sara Ahmed, talks about the ‘wilful girl’, who is seen to behave like a disobedient child, in her book Living A Feminist Life (2017). An employee who is given accommodations, like in North’s study (2021) and then needs to make adjustments to better suit her neurodivergence, is seen as ungrateful, wilful, a killjoy, and is punished with the fear or real threat of being rejected from the workforce perhaps through redundancy. Having overcome the many barriers of getting an assessment as an adult, autistic women then have to decide how to ask for changes to be made to workplaces that were not designed for them. Cultural shifts in attitudes can improve working conditions rather than expensive new technologies. North (2021) writes that the ‘informal hierarchies that create and preserve work life inequalities’ are significant not only in dictating working conditions but in deciding who has the right to ask for change. If an employer has ticked the equality box by providing new software employees may be afraid or discouraged from speaking up about equality and diversity practices at work. This can lead to ‘double oppression’, whereby autistic women are both discriminated against and ‘denied the right to define what one has experienced’. Additional difficulties are layered upon existing issues that impact on women’s’ career development. It is the familiar glass ceiling but one that is double glazed. Autistic women often work hard to cover up or manage their neurological difference, thereby internalising their struggles. ‘Pretending to be normal’ is often part of everyday life for autistic women to avoid being disadvantaged. Autistic women may be regarded as not disabled enough by employers who may tick boxes in relation to equality laws or minimise the inconvenience of employing them. Adequate consultation with employers may be avoided or met with resistance because they are regarded as undeserving of support by employers who are underinformed about autism and gender inequalities and also resistant to change. Hayward, Stokes, and McVilly (2022) reported that compared to autistic men, autistic women experience fewer interpersonal challenges possibly due to a greater level of social adaptation or potentially enhanced masking ability, but as we will find in the next point, high levels of masking is a key element of emotional labour leading to burnout.

Wolbring and Lilywhite (2023) researched burnout in disabled people, which they described as a state of physical, emotional and mental exhaustion that results from long-term involvement in work situations that are emotionally demanding. Some characteristics of workplace burnout are exhaustion, mental distance, cynicism, depersonalization, and professional inefficacy. They cited causes of burnout to include excessive demands, work overload, chronic occupational stress, perfectionism, lack of coping skills for stress, poor relationships with colleagues, lack of time for self-care, personal and situational challenges, abuse, amongst many, many others they listed (Wolbring and Lilywhite, 2023). Disabled people are one group that faces many challenges within the workplace. For example, according to Statistics Canada, 35% of disabled university professors, instructors, teachers, and researchers experienced unfair treatment or discrimination in the past 12 months and 47% saw themselves subjected to at least one type of harassment in the past 12 months. Thus, the percentage of disabled university professors, instructors, teachers, and researchers experiencing unfair treatment or discrimination, or harassment is the highest of all groups recorded. As such, they are in danger of experiencing burnout at the workplace, and, consequently, it is important to know what the academic burnout literature covers in relation to disabled people (Wolbring and Lilywhite, 2023). In their 2023 study, the factor of emotional labour was mentioned in relation to “autistic burnout”. However, they found the emotional labour of having to fit in is not limited to autistic people or neurodiverse people. Not being accepted for who one is is a well-known problem disabled people face in general as workers and students. Many disabled people do not disclose their “disability”, whether as workers or students. One interesting discovery from the experience of Wolbring and Lilywhite conducting their research was when they searched for articles with the words ‘disability burnout’ many of the articles pertained to staff burnout, the stress that challenges caregivers of people with disabilities. None of the retrieved articles dealt with the stress challenging people with disabilities who have to deal not only with the limitations of their condition, but also with social policies and practices that marginalize or ostracize them on the basis of disability. Clearly more awareness, visibility and research needs to uncover the lived experiences of disabled people themselves who feel burned out. Wolbring and Lilywhite (2023) also mentioned “minority stress”, a state that autistic researcher Monique Botha also discusses in her papers which I will talk about in another episode. They write that minority stressors include external conditions and events, such as discrimination and victimization. Internal minority stressors include expectations of rejection and discrimination, concealment of minority identity, and internalizations of negative dominant cultural attitudes, beliefs, stereotypes, and values, all of which could be relevant to autistic employees for their neurodivergence as well as intersectional identities.

Doyle, McDowall, and Waseem (2022) undertook research that examined why programs that purposefully target autistic people for their abilities inadvertently attract mainly white males, furthering the stigma surrounding autism that it does not effect marginalised identities, including by gender, race, ethnicity, sexuality, and socioeconomic status. Doyle, McDowall, and Waseem (2022) found that white autistic people living in western countries such as the United States and Europe were more likely to have jobs, they were also more likely to have jobs specifically designed for autistic people. They found that women, non-binary, and transgender autistic people felt less included at work, and also found that feeling that someone cares is more important than any adjustments to work scheduling such as flexible working to support people…They did not have enough people from the non-western countries or communities of colour to report on their experiences, and acknowledge that more research in these countries and communities is needed (Doyle, McDowall, and Waseem, 2022). The article found that legal protections about the right to employment for disabled people and other protected conditions/identities around the globe have not materialized into a reduction in the autism employment gap. Only 22% of autistic people are in employment, indicating consistent marginalization and labour force exclusion. This is evident from a UK data comparison of physical conditions and other disabilities (including mental health conditions) as the lowest employment rate in this particular comparison.

Doyle, McDowall, and Waseem (2022) found that when an organization considers inclusion per category, they might find that they are improving proportional representation of Black people, or women, for example. They might have good representation of disability, or specifically autistic people. However, they may not have representation of Black autistic people or autistic women, or Black autistic women; consequently, the experience of intersecting identities is overlooked in organizational data (Doyle, McDowall, and Waseem, 2022). According to the intersectionality theory, there is a risk that equality, diversity, inclusion, and belonging (EDIB) activity that focuses on one marginalising characteristic at a time overlooks the experience of multiple identities, which might explain why there are fewer women in autism-specific hiring programs, for example (ibid). Doyle, McDowall, and Waseem (2022) identified other research that found that those with an early assessment experienced less self-stigmatisation and sourced work roles and environments that closely matched their authentic skills and work style, decreasing the need for masking. However, if an assessment is restricted by race and gender, and complicated by sexuality and transgender status, such identities create hidden barriers in the workplace (ibid).

Despite accumulating evidence regarding various workplace accommodations that address the needs of autistic employees, an evidence-based classification of accommodations that addresses both environmental characteristics and job requirements is still needed. Such classification could assist managers and co-workers to use their knowledge of autism practically and to promote the employees’ self-advocacy to pursue their rights for an accessible workplace (Waisman-Nitzan, Gal and Schreuer, 2021). Waisman-Nitzan, Gal and Schreuer (2021) acknowledged that a strengths-based approach for autistic employees would help them in the workplace, perhaps utilising what the participants described as their intensive focus, thoroughness, and interest in repetitive tasks that often neurotypical people find boring. This approach shifts focus from impairments to strengths, to identifying unique and necessary abilities that autistic individuals might contribute. Participants of Waisman-Nitzan, Gal and Schreuer’s study (2021) described mentors, usually coworkers but sometimes direct supervisors, as providing ongoing supervision and guidance, promoting colleagues’ interpersonal initiatives, and providing support to interpret social situations and appropriate behaviours. The literature suggested the term, natural supports, for work-related mentors (i.e., nonprofessional people in the workplace who are not trained in ASD) who provide assistance, feedback, contact, or companionship for employees with disabilities. This support not only benefits those with ASD, but also results in satisfaction and positive attitudes among co-workers who act as their natural supports in the workplace. Waisman-Nitzan, Gal and Schreuer (2021) identified three preconditions that were applied in order for an individual to have the accessible supports they need: the first is disclosure and the possibility that it would expose them to prejudice and discrimination, as well as good opportunities for employees and supervisors to discuss accommodation needs; the second is the need for an inclusive organisational-diversity climate with social sensitivity and respect for diverse employees, and to recognise the accessibility may encompass ongoing, nonphysical supports; the third is a “goodness of fit” between the employee’s abilities and interests and the job’s demands, based on identifying the employees’ abilities, interests, motivations, and evident contribution to the work place. In Gemma North’s (2021) research, participants had good experiences at work with employers and colleagues who understood and accepted their differences and were willing to accommodate them. It was widely agreed that although providing infor­mation about autism at work was important, a positive attitude was more so. Participants felt that where their workplace culture was flexible, commu­nicative and open to difference fewer difficulties existed. Managers who took a strengths-based approach to allocation of work to individuals rather than following gendered and ableist norms supported their employment more effectively. Gemma North (2021) describes universal design in her research which pertains to the notion that all environments should be accessible and inclusive enough to accom­modate any employee regardless of their difference. The onus is not on the individual to adjust. Universal design advocates for a framework of legislation that focuses on the social organisation of work. It requires employers to focus on improving aspects of the workplace environment to make it more accom­modating for all. In doing this, employers focus first ‘on the disabling society in which we live’. Research participants felt that regular and ‘clear messages’ for stimming to be an acceptable behaviour should be given at work. Repeated actions and behaviours such as this can challenge prevailing assumptions (Jenkins and Finneman 2018) thereby rein­forcing new approaches to doing and being at work.

Klag, Nicholas, and Métayer (2021) identify in their research two things that must happen in order for transformative change to occur. First, there is a need for a deep understanding and questioning of the drivers and weaknesses in existing systems in all communities. Second, there is a need for multilevel and multipronged action toward pro-supportive employment policy and community contexts, and to recognise that doing only one thing is not going to fix such a widespread and complex issue. They (Klag, Nicholas, and Métayer, 2021) identify a need to understand the complex system in which autistic individuals exist in order to make changes that work, that collective rather than individual change is most effective. They write in their article:

First, it is important to authentically embody the notion of nothing about us without us, ensuring that a change coalition is led by, or fully integrates, autistic people who seek to advance the employment ecosystem and who themselves are at its center. Second, a diversity of experience, backgrounds, and interests provides for critical cross-functional thinking and perspective-taking, as well as a common language and understanding. A cross-sectoral approach (e.g., public, private, and community sectors) may also be helpful… The third factor to consider is the important role of tight feedback loops in working to promote and coordinate change effectively and efficiently within and across sub-systems and/or system levels…Key members who are well positioned for tight feedback loops, given their positionality in their own networks, may or may not hold formal power or high-profile positions. In some cases, they may be unusual suspects who are only discovered through intentional on the ground networking. The fourth consideration is the importance of a stakeholder group that is constituted by both change agents with an entrepreneurial orientation and other actors who deeply understand the administrative routines of pre-existing institutions and structures… Fifth and finally, learning within complex systems shows that a balance between a dynamic of cooperation and respectful conflict may be more conducive to transformational change than solely seeking those who tend to agree (Klag, Nicholas, and Métayer, 2021, p.493).

Researchers Doyle, McDowall, and Waseem (2022) recognised that the Neurodiversity movement, which frames biological differences (including neurodevelopmental conditions such as autism) as natural variations in human functioning, has begun to influence public discourse, awareness, and organizational practice. These movements suggest a need to move toward more inclusive practice for autistic people that is underpinned by context-relevant scientific evidence (Doyle, McDowall, and Waseem, 2022). The Neurodiversity paradigm has argued for a more holistic consideration that acknowledges societal influences (including labour force participation) on stigma as a result of exclusion rather than the cause. The untapped talent argument argues that we should ‘‘decouple’’ stigma to harness the opportunities of contemporary employment. This requires reconceptualizing autism from a ‘syndrome of deficits’ toward an essential feature of human cognitive diversity. Although such narrative is beginning to shape popular understanding, the disproportionate exclusion of autistic people appears to indicate that stigmatized stereotypes that preclude inclusion at work continue to prevail. Stigma theory, or perceived ‘undesirable attributes’ that are incongruous with people’s stereotypes of what an individual should be like, provides an underlying explanatory framework for understanding the disparity in autism employment rates (Doyle, McDowall, and Waseem, 2022).

There is a lot to uncover when it comes to autism in the workplace, and I will do a second part to this episode as there was more research I would have liked to include.

Thank you for listening. Join me next episode where I will conclude this research area. Please review the podcast if you can, and share it with someone you think might be interested. The research I have used in this episode can be found cited in the show notes. I am Alexa and this has been The Neurogender podcast.

Show Notes:

Power of Disability conference 2024 (Dublin, Ireland):

Academic research papers:

Doyle, N., McDowall, A. and Waseem, U. (2022) 'Intersectional Stigma for Autistic People at Work: A Compound Adverse Impact Effect on Labor Force Participation and Experiences of Belonging', Autism in adulthood, 4(4), pp. 340-356.

Hayward, S. M., McVilly, K. R. and Stokes, M. A. (2018) '“Always a glass ceiling.” Gender or autism; the barrier to occupational inclusion', Research in Autism Spectrum Disorders, 56, pp. 50-60.

Hayward, S. M., Stokes, M. A. and McVilly, K. R. (2022) 'Short report: Gendered workplace social interaction processes in autism', Research in developmental disabilities, 129, pp. 104310-104310.

Klag, M., Nicholas, D. and Métayer, S. (2021) 'Creating a Resilient Ecosystem for the Employment of Autistic Individuals: From Understanding to Action', Families in society, 102(4), pp. 485-503.

Lien, K. et al. (2021) 'Blending Traditional and Nurturing Fathering: Fathers of Children With Autism Managing Work and Family', Family relations, 70(1), pp. 264-281.

North, G. (2021) 'Reconceptualising ‘reasonable adjustments’ for the successful employment of autistic women', Disability & Society, 38(6), pp. 944-962.

Spoor, J. R. et al. (2021) 'Employee engagement and commitment to two Australian autism employment programs: associations with workload and perceived supervisor support', Equality, Diversity and Inclusion: An International Journal, 41(3), pp. 508-524.

Waisman-Nitzan, M., Gal, E. and Schreuer, N. (2021) '“It’s like a ramp for a person in a wheelchair”: Workplace accessibility for employees with autism', Research in developmental disabilities, 114, pp. 103959-103959.

Wolbring, G. and Lillywhite, A. (2023) 'Burnout through the Lenses of Equity/Equality, Diversity and Inclusion and Disabled People: A Scoping Review', Societies (Basel, Switzerland), 13(5), pp. 131.