Considering the Autistic advantage in qualitative research: the strengths of Autistic researchers

ABSTRACT

Autism is often viewed as an impairment, preventing Autistic individuals from achieving success in the world. We argue that, Autism can be an enhancement, particularly in some professional contexts, including qualitative research. However, Autistic people experience higher rates of unemployment and underemployment (lower skills/part-time). The social model of neurodiversity highlights the role of inaccessible workplaces and practices. Alongside this, the concept of the ‘Autistic Advantage', a strengths-based model, emphasises the ways in which Autistic people are assets to the social structures in which they exist. Two late diagnosed Autistic women, acknowledged as qualitative research experts, review the literature on Disability, neurodiversity and research; outline their own professional strengths; discuss their professional strengths in the light of the literature; and make recommendations for Autistic researchers and their neurotypical colleagues. Autistic qualities and preferences can be strengths in qualitative research teams. This includes long periods of concentration (hyperfocus), leading to ‘flow’ and creative thinking, attention to detail, and detailed knowledge of topic areas that are of interest to the individual. We conclude that qualitative research teams can benefit from working inclusively with Autistic researchers. We present guidance to facilitate inclusive working, without which Autistic researchers may be Disabled by their work environment

KEYWORDS:

• Autism
• Autistic
• qualitative
• researchers
• reflexivity
• positionality

Introduction

This article adopts Feminist Disability Studies (Garland-Thomson, 2005) and Critical Autism Studies (Woods, Milton, Arnold, & Graby, 2018) approaches to critically consider the potential advantage to qualitative research teams of employing Autistic researchers. We use as data our own lived experience as late-diagnosed Autistic women who are professional qualitative researchers. As always, intersectionality (Crenshaw, 1989) matters, and some Disabled women hold more privilege than others (Naples, Mauldin, & Dillaway, 2019). To date, race has been neglected within Disability studies, particularly affecting Black women who are subjected to negative stereotypes depicting aggression (Bailey & Mobley, 2019); both authors acknowledge the privilege of their whiteness. Mental health conditions have also been stigmatised within Disability Studies. Also, to date, neurodiversity has not tended to fit within the social model of Disability, and has often been neglected by Disability Studies (Douglas et al., 2021). These internal divisions within Feminist Disability Studies can be viewed as a case of ‘othering’ by those with relative privilege to reduce their own stigma in a disabling society (Taylor-Gooby, 2013). We now go on to explore existing literature in relation to: Disability and research neurodiversity and research, and Autism and work; before introducing the concept of the ‘Autistic advantage’.

Disability and research

Disability is a complex field which is difficult to explain concisely (Broido, 2020). This section draws heavily on the seminal work of Tom Shakespeare, a Disabled academic, ethicist, and Disability rights activist, because we consider Shakespeare to be excellent at clarifying this complexity. The phrase ‘Disabled people’ implies homogeneity but in fact there is huge diversity of impairments and experience among Disabled people, which may change over time and in respond to differing environments (Shakespeare, 2018). Impairments include physical, mental, and neurological impairments, which can vary from very mild to very severe. Also, people may have more than one impairment – and some people reject the idea of impairment altogether, preferring to focus on another conceptualisation such as ‘difference’ (Shakespeare, 2018, p. 5). Disability has traditionally been understood through the ‘medical model’ of impairment, which individualises both the ‘problem’ of Disability and the scope for solutions. However, in the late 1960s UK activists formed the Union of the Physically Impaired Against Segregation (UPIAS), a group of Disabled people who developed the ‘social model’ of Disability (Shakespeare, 2018, p. 12). The social model was in part a reaction to the ‘medical model’ which views Disability as a problematic attribute of the individual. The contrasting UPIAS view was that it is not individual impairments but society which disables people, through factors such as inaccessible environments and inflexible institutions – and that this can, and should, be changed (Shakespeare, 2018).

The social model has enabled a shift in thinking which has led to more understanding and protection of Disabled people’s rights (Riddle, 2013). However, it also presents some problems. It risks excluding the contribution of medicine in improving the quality of some Disabled people’s lives (Riddle, 2013). Also, the binary distinction between medical and social does not reflect real-world complexity. Some people, who others might define as Disabled, do not consider themselves as Disabled (Shakespeare, 2018). Moreover, the model’s reliance on individual impairment excludes people who consider themselves as Disabled but not impaired, such as some neurodivergent people (Chapman, 2020). Tom Shakespeare argues that Disability is not only caused by oppression but is multi-factorial, including physical, psychological, and social factors. He calls this the ‘bio-psycho-social model’, and argues accordingly that Disabled people may need support at physical, psychological, and social levels (Shakespeare, 2018, p. 21).

In the last quarter of the twentieth century, Disability and other activists developed ‘emancipatory research’ (Telford & Faulkner, 2004, p. 549) which questions who controls the resources and conduct of research, and how research can be used to benefit marginalised groups (Cotterell & Morris, 2012). Another model is ‘inclusive research’, a term used by researchers who work with people who have learning disabilities. Some people with learning disabilities are able to conduct research without any accommodations. Others need accessible research environments in order to participate in research, so inclusive research recognises that research may be ‘conducted by, with and for people with learning disabilities’ (Nind, 2017, p. 279). This is a direct contrast to research which is conducted on Disabled people, and means that any person with learning disabilities can potentially be included in research in whatever way suits them.

One thread that runs through these approaches is the importance of understanding Disability from Disabled people’s viewpoints (Broido, 2020). The diversity within the Disabled communities creates a tension for research which is, by definition, designed to smooth out unevenness and help us understand complexity (Fox & Alldred, 2015). The concept of ‘intersectionality’ (Crenshaw, 1994), mentioned above, can help us work with this tension. Nobody is only Disabled; everyone’s identity includes ethnicity, gender, and sexual orientation, among other factors. An intersectional approach does not try to include every aspect of identity, but aims to accept and reflect the complexity of human identity within research design and conduct (Frost & Eliachoff, 2010). Despite over 50 years of Disability research activism, Disabled people are still predominantly viewed as subjects of research, not as researchers (Arstein-Kerslake et al., 2020). The value of lay people in solving society’s problems is increasingly recognised, resulting in the growth of citizen science projects (Irwin, 2018). To date, citizen science is overwhelmingly conducted by highly educated white middle-class men (Curtis, 2018). Sometimes, now, Disabled people are involved in Disability research, but this can be tokenistic (Price et al., 2018), and there is rarely recognition that Disabled people can play a useful role in other types of research (Kara, 2013).

Neurodiversity and research

Like other demographic characteristics, such as gender and ethnicity, everybody has a neurotype. The majority of people, around three-quarters, are defined as neurotypical. The remainder are known as neurodivergent. Neurodivergence, like Disability, is not a single, unified neurotype, nor set of experiences. Since the 1940s, a range of diagnostic labels have been given – by doctors and psychologists – to people with groups of neurodivergent characteristics, including dyslexia, dyspraxia, Autism, and Attention Deficit Hyperactivity Disorder (ADHD). Each of these diagnoses is based on deviation from neurotypical thoughts and behaviours. Autistic people are typically seen to struggle with neurotypical communication and relationships, and sensory processing in Western environments, and ‘mask’ in order to navigate a neurotypical world, which is exhausting and debilitating (Pearson & Rose, 2021, p. 4). Autistic people who were not diagnosed and/or treated during childhood often learn to mask independently, in order to increase positive outcomes of social interactions whilst reducing negative outcomes (Allely, 2019). This has applied particularly to girls, women and non-binary people because diagnostic criteria have been skewed in favour of boys and men (Giarelli et al., 2010). Within this context it is unsurprising that Autistic individuals have experienced, and do experience, worse outcomes compared to their neurotypical peers when it comes to health, education, employment and criminal justice (Kapp, 2020). Furthermore, when Autistic people are unable to perform the exhausting act of masking, they may be refused access to essential public services, including health care (Nicolaidis et al., 2015).

From its beginnings in Nazi Vienna, research on neurodiversity was very much the privilege of neurotypical academics and was often linked to eugenics. Hans Asperger, who Asperger’s Syndrome is named after, identified a group of ‘Autistic psychopaths’ (Czech, 2018) and contributed to their ethnic cleansing whilst claiming that he was helping Autistic people (Sheffer, 2018). Arguably, the first time Autistic people were considered experts of their neurology was in 1986 (Grandin, 1986). These early works by high functioning Autistic people carried many highly ableist assumptions, and contributed to the subjugation of Autistic people. The phenomenon of ‘othering’, where a group of people are perceived as less or deficient for their differences to the ‘norm’, is well established. The use of functional labels, such as high- or low- functioning or Asperger’s Syndrome, as opposed to Autism, has been identified as harmful to all Autistic people (Botha, Dibb, & Frost, 2020; Botha, Hanlon, & Williams, 2021). Autistic is now the recognised diagnostic label and preferred by many within the Autistic community (Woods et al., 2018).

Even now in the twenty-first century, research is frequently on Autistic people, not with or by them, and is situated within functionalist philosophy which fails to take account of lived realities (Milton & Maclean, 2013). A few neurotypical allies, such as Laura Crane and Sue Fletcher-Watson in the UK, have conducted research with Autistic people (Crane, Adams, Harper, Welch, & Pellicano, 2018; Fletcher-Watson et al., 2019). In the US, guidelines for this kind of work have been created by a group of researchers, following several projects using Participatory Action Research to improve Autistic people’s access to health care. The guidelines aim to ensure Autistic co-researchers can be included equitably, including fair compensation, effective communication and power-sharing techniques and collaborative dissemination (Nicolaidis et al., 2019). However, it is clear that Autistic participants still do not feel adequately included in research in general, sometimes feeling they are just a ‘guinea pig’ (den Houting, Higgins, Isaacs, Mahony, & Pellicano, 2021).

Examples of inclusive research with Autistic people do exist, often coming from a new generation of Autistic doctoral researchers (Woods et al., 2018). Alongside this, the expertise of Autistic people as researchers on Autistic experience is being increasingly recognised by a minority of research teams (Gillespie-Lynch, Kapp, Brooks, Pickens, & Schwartzman, 2017). A further step forward is the growth of Critical Autism Studies, some of which identifies itself as epistemologically separate from research conducted by neurotypical researchers on Autistic people, through its use of emancipatory philosophy (Woods et al., 2018). In recent years, the neurodiversity movement has also gained traction, including a major UK political party producing a neurodiversity manifesto (Kapp, 2020). The next step is for neurotypical and neurodivergent researchers to work together inclusively.

Autism and work

Autistic people struggle to find and keep jobs that are created by and for neurotypical people. The employment rate of Autistic people is not only lower than that of neurotypical people, it is lower than that of Disabled people. For example, in the UK in 2021, research found that the proportions of people aged 16–64 in work were 81% of non-Disabled people, 52% of Disabled people, and 22% of Autistic people (ONS 2020).

This is problematic because work is not only a way to earn a living, it is also a route to independence, higher self-esteem and social status, and community inclusion (Hedley et al., 2018; Purkis, 2018). There are a few examples of good practice in meeting the access needs of Autistic employees, such as initiatives from various large and small companies (Remington & Pellicano, 2017). One of these that was thoroughly evaluated was the Deutsche Bank internship programme of 2016/17 where Autistic people were paid to intern with this leading bank (Remington & Pellicano, 2017). This was generally successful, though not without challenges. This is not surprising because, even in a welcoming workplace, Autistic people can experience problems such as difficulty in understanding workplace hierarchies, difficulty understanding unwritten organisational norms, and sensory difficulties such as trying to concentrate in a noisy bright environment (Purkis, 2018; Botha, 2021).

Research has also shown that Autistic employees bring benefits to their work environment. Creative and innovative thinking, plus diligent, productive and consistent working habits, are often mentioned as attributes of Autistic people which are valuable to employers (Bewley & George, 2016; Purkis, 2018). Also, Autistic employees can offer insights into the needs of neurodivergent clients, suppliers, or staff from partner organisations (Bewley & George, 2016). In order to ensure Autistic people can flourish within the workplace, the evaluators of the Deutsche Bank internship produced four recommendations (Remington & Pellicano, 2017, p. 29):

1. Make expectations clear, use clear language, and make any offer sincere

2. Treat everyone as a unique individual

3. Provide training to staff on working with Autistic colleagues

4. Find a neutral person who can act as a source of advice to everyone and, when necessary, a mediator

‘The Autistic advantage’

Most research is deficit-based, focusing on a problem or a lack (Kara, 2020) which has often been defined by people in power. In recent years researchers from a range of disciplines and fields have begun to undertake asset-based research, focusing first on strengths and contributions, and only then looking at any difficulties that may merit further investigation (Kara, 2020). The majority of research on Autistic experiences is deficit-based; assuming there are only disadvantages to being neurodivergent. This has been thoroughly debunked by Autistic people considering ‘the Autistic Advantage’ (Russell et al., 2019), within an asset-based approach.

Autistic individuals have stronger than neurotypical abilities in relation to maintaining focus on tasks (hyperfocus), attention to details, memory and creativity (Nowell, Bernardin, Brown, & Kanne, 2020). Neurodivergent researchers have identified how much can be achieved when one’s attention is split in fewer directions. This kind of ‘attention tunnelling’ is known as monotropism, or the ability to focus heavily on a few interests, rather than focusing more lightly on a higher number of interests as neurotypical people are inclined to do (Murray, Lesser, & Lawson, 2005). In her ground-breaking work, Dinah Murray identified that Autistic individuals got into a ‘flow’ (1997, p. 2) where they could focus and were highly productive. Within hyperfocus, many Autistic people have excellent attention to detail, which is an asset in many employment sectors.

Further Autistic advantages can be considered in the form of hyper-plasticity, direct communication, loyalty and empathy. Emerging research has identified that Autistic brains have higher levels of adaptability in the form of generating new neural pathways, known as hyper-plasticity, which impacts on creativity, learning and memory (Wilson, Lodhia, Courtney, Kirk, & Hamm, 2017). This may account for ‘thinking outside of the box’ in relation to creative problem solving. Alongside this Autistic communication differences can be advantageous, including direct communication and honesty, particularly within leadership positions. Furthermore, loyalty and empathy (Murray, 1997), are social traits common in Autistic people which are highly desirable traits for employees of all levels. We will elaborate on this in our discussion, but first we offer you accounts of our own professional experiences and strengths, before considering what these can tell us in the light of the literature on Disability, neurodiversity and research. Our accounts are written in our own voices, with no attempt to standardise them to fit the conventional academic writing mould. We have taken inspiration here from John Law’s argument that variety is everywhere and that social research can – perhaps should – reflect the untidiness of the world (Law, 2004). Also, we choose to model our assertion that Autistic people are a heterogeneous group by making our authentic voices heard in this article.

Considering the Autistic advantage in qualitative research: a tale of two Autistic researchers

Aimee

Aimee was diagnosed as Autistic in August 2019 by a ‘private’ psychiatrist; she was aged 37. Leading up to this event, Aimee had been a qualitative health researcher for over a decade. Completing her doctorate in 2011, she has worked as a researcher for government, the NHS and within academia. She is published widely, both within applied health and social sciences. Within her work, she often considers:

1. lived experience of health and Disability, and

2. why interventions to promote health do or do not work.

Aimee’s main longstanding interest is in social justice and inequality. As a child she had a keen sense of ‘right and wrong’ and ‘fairness’ that often marked her out from her peers as a ‘tell-tale’, but also won her awards for her good citizenship. She studied criminology and social policy as an undergraduate, before an MSc in social science research methods and a PhD in social policy, which examined a back to work intervention aimed at Disabled benefit claimants (Grant, 2011, 2013). In her research since, she has focused on marginalised people such as those who originate from working class backgrounds, stigmatised areas, women and Disabled people. Most recently her research has focused on smoking (Grant, Morgan, Gallagher, & Mannay, 2020) and infant feeding (Grant, 2016; Grant, Mannay, & Marzella, 2018), both areas with considerable stigma attached. Aimee feels confident to speak out against doing research on marginalised groups, instead of with them, and has argued strongly for participants in clinical research to be asked about how they experienced the intervention. Aimee has withdrawn her labour from projects that fail to treat participants as humans, rather than give faux credibility to the project.

Aimee’s skills within research involve meticulous planning, and attention to detail, which were particularly useful when working on registered clinical trials. It is very rare for her to ‘drop a ball’ and forget something she is responsible for, even when her workload is very high. Alongside this, Aimee’s use of hyperfocus means that she is able to work in long blocks of time and to work with a ‘fast’ brain. This can include getting a large data set coded within a few days, due to working for long hours and doing little other than code, followed by a period of ‘down time’ to recover. Another example includes working on a team ethnography, periods of data collection on hospital wards were for 4–5 h at a time and Aimee would then leave the field and spend the rest of that day expanding on her ethnographic field notes, which were consistently praised for their depth and detail. As it is not always possible to work on projects for long periods of time, when Aimee has to work in shorter periods, such as when writing her first book, rituals – in this case a cup of lemon and ginger tea and a blanket – can enable her to quickly get into hyperfocus promptly and be productive within periods of less than an hour.

In contrast to hyperfocus, Aimee also has what she describes as her ‘shiny magpie brain’, which may contain elements of ADHD. This means that she almost always has her mind on a new and exciting project. Accordingly, without bursts of enthusiasm from co-authors, Aimee can leave papers half-written for many months, or even years. The oldest of these papers is from her PhD, completed in 2011, which she returns to periodically and will finish at some point. At the time of writing this paper, Aimee had just submitted a book manuscript and had nine partly written papers to attend to, as well as ideas for dozens of new and exciting projects, each situated within her long-term ‘blue skies’ research agenda.

Alongside her attention to detail, Aimee uses significant creativity within her approach to research, often bridging the divide between ontologies and disciplines within research with large groups of co-investigators. For example, this includes adding documentary analysis (Grant, 2019) and visual and creative methods (Mannay et al., 2017) into studies designed within a positivist research paradigm. Aimee considers herself to be a methodological and paradigmatical chameleon. Masking has been such a strong part of Aimee’s workplace behaviour for so long, that she is able to adapt to whatever approach is being adopted by others, with a primary focus on increasing social justice through that research, rather than epistemological or methodological purism. The everyday reality of needing to work to understand neurotypical communication means that Aimee takes an interpretivist approach to her life, as well as her work. Accordingly, performing these skills in the research field comes easily to her and can be performed for long periods at a time.

Helen

I was diagnosed Autistic by the NHS in February 2021, aged 56. I have earned my living as an independent qualitative and multi-modal researcher for over 20 years. Before that, I worked in various roles in the private, statutory and voluntary sectors through most of the 1980s and 1990s; a good background for understanding the cross-sector and partnership environments where most of my research work has been located.

The fact that I have maintained a business for over 20 years demonstrates my skills in self-discipline and in networking as both are essential for successful self-employment. I am also an excellent writer, as demonstrated by my publication history (see for example: Kara, 2018), because words and language are a lifelong special interest. And my research work is supported by useful qualifications: a BSc in Social Psychology from the London School of Economics, which was entirely quantitative; an MSc in Social Research Methods from Staffordshire University in which I worked more on qualitative techniques to balance my skillset; and a cross-disciplinary PhD from the Open University which was entirely qualitative.

I am a fast thinker, which is a great strength in some situations. I know that at other times slower, deeper thought is more useful, and I enjoy collaborating with people who have this ability. In fact, I generally enjoy collaboration and teamwork, particularly when I am working in positions where I can play to my strengths and with people who value my directness. Many neurotypical people do not; some live in a world of unspoken norms and things ‘everyone knows’ (er, everyone except me and most other neurodivergent people, actually) which Dinah Murray has called ‘ordinary … duplicity’ (Murray, 1997, p. 3). But some neurotypical people are comfortable with directness, and others become so when they learn that I am Autistic and can’t function indirectly. And I believe that direct communication may be more effective as there is less room for misunderstanding.

I am very good at concentrating. I love a whole day of data coding or writing. I can often get a lot done in a short space of time. I remember a conversation at a conference with a woman who worked for a research agency. She asked me how many interviews I would expect to do in a day. I said if I needed to travel a little way between interviews, such as around a city, I would expect to do two to four depending on the length of the interviews and the journeys. If interviewees were coming to me, I would expect to do at least six and maybe more, again depending on the length of the interviews. She was astonished and said that when her agency was costing work for clients, they worked on the basis of one interview per day, to ensure that staff could travel to the interview from the agency’s premises, get the interview done and travel back to the agency within the working day. It was my turn to be astonished.

I am good at identifying gaps, links, and patterns, which is particularly useful in qualitative research. And I am entirely willing and able to outline my own position on an issue, and to change my mind when presented with persuasive evidence; these qualities are strengths for my scholarship. I have documented this process in two of my books (Kara, 2018; Kara, 2020) where I wrote about how I learned from academic literature that decolonising methodologies constitute a transformative research framework akin to feminist, emancipatory, and participatory methodologies. Then I attended a seminar in 2016 presented by three Indigenous researchers, Professor Bagele Chilisa from Botswana, Professor Helen Moewaka Barnes from New Zealand, and Dr Deborah McGregor from Canada. They taught me that decolonising methodologies were developed by Indigenous researchers and so belong to the Indigenous research paradigm which is separate from the Euro-Western research paradigm (and, in fact, pre-dates it by tens of thousands of years). So I changed my mind on this point, and was happy to acknowledge that in my work.

I love a plan. Plans make me feel secure. Planning is important in research – and so is flexibility, because sometimes plans need to change. When a plan has to change, I feel scattered and need time to regroup. This can be a useful counterweight to my fast thinking. It balances my inclination to reach for the next new plan – any new plan – to regain the feeling of security, and so enables me to take the time I need to revise my plan in a sensible way.

Of course, I am not perfect. I do not easily switch from one task to another. I am terrible at filing papers (though good at digital filing), hopeless at book-keeping and accounts, and my workspace is always a dreadful mess. I am barely adequate at making PowerPoint slides, and I sometimes forget to answer important emails. Yet, given my professional strengths, qualitative research and scholarship suits me well. I can put in sustained effort at long tasks. There is, at least in the kind of research I do, a pleasing balance between creativity and regularity. I can work alone for much of the time and also collaborate with like-minded others. I have never wanted to be an employed academic, as most of my experiences of employment have not been positive, but I am very happy as an independent researcher and scholar.

Discussion

As our tales have shown, there are some similarities and some differences between us. A key similarity, and the one which brought us together to write this article, is the fact that we each acquired a diagnosis of a lifelong Disability in adulthood. This undermines the idea that disabilities are either lifelong or acquired; in fact they can, evidently, be both. What does occur for many Autistic people at the point of diagnosis is the viewing of life events through a different lens. We have applied this lens to our work lives retrospectively in order to draw out areas where we utilise the Autistic Advantage. During our discussions, it became apparent that for both researchers, doing research was relatively straightforward and enjoyable, as Helen noted: ‘(research) is the easy part of my life’.

Like all human beings, Autistic people will be better at some things than others. However, we invite you to entertain the possibility that a quality or preference that could be viewed as a ‘weakness’ by some neurotypical researchers may also be considered a strength (Russell et al., 2019). For example, if a team member would prefer to continue coding data through the lunch break, they may be viewed as irritatingly anti-social or usefully productive. If they insist on precision in data entry, they may be thought of as nit-picking or ensuring quality. If they argue that ethical considerations are important beyond formal ethical approval, they might be called a timewaster or an advocate for marginalised groups. Our point, that we explore in more detail below, is that context matters.

We argue that the Autistic advantage has some specific applications for qualitative research work. Hyperfocus and Autistic ‘flow’ enable us to get a lot done in a short space of time, which is useful when timescales and budgets are tight (as they so often are). Attention to detail is very useful when planning research, managing budgets, and coding data. Creative thinking is helpful at all stages but perhaps particularly when analysing data and identifying patterns, connections, and links. Autistic empathy can support colleagues, participants, and other stakeholders, and Autistic loyalty is useful for research teams and employers.

The Autistic Advantage, however, is dependent upon the social context and the Autistic person’s ability to cope in that context. For instance, there is a common miscommunication between neuro-typical and neuro-divergent expressions of empathy (DeThorne, 2020). We have both been Disabled by working for big organisations. Aimee has had resistance (‘we can’t afford this’) and later removal of long-standing reasonable adjustments ‘prescribed’ for her as part of Access to Work, a UK government initiative to keep Disabled people in work. This has required direct challenges to assert for her legal rights, significant physical and mental health harm and the use of Employment Tribunals. She has excelled and been highly productive when working for managers who use direct communication but been criticised by managers who do not communicate their expectations clearly. Helen has found it difficult to understand what was expected of her; has been criticised for taking things too literally; and has struggled to concentrate in the noise and bustle of open-plan offices. Also, in common with many Autistic people, we each have other disabilities that require adjustments in the workplace. Aimee has now found a Disability-friendly employer, and Helen is doing much better working for herself than she ever did working for an organisation.

By contrast, within the UK at least, Government support is available to facilitate the Autistic advantage within the workplace. Both Aimee and Helen have been granted Access to Work funding by the UK Government. Aimee’s first Access to Work funding in 2015 provided software (for dictation and text-to-speech) and neurodiversity coaching, and this funding has been available in each of her roles since. When she became unable to walk the 400 metres to the office, she was part funded a mobility scooter, and later part funded a boot hoist for her electric wheelchair. Recently, we have each been awarded funding for a part-time specialist support worker for our scholarly and research work. This has made a massive difference. For Aimee, proof reading – including a whole monograph in the first week – means that she can focus on getting words on the page, rather than endlessly editing them to ‘catch’ mistakes. Furthermore, having somebody available in meetings to take notes means that she is better able to be ‘present’ and contribute, rather than simply trying to create memories. For Helen it has meant someone to take over the ‘simple’ tasks she finds so difficult, like managing post and reconciling bank statements. Now, instead of spending hours and hours on these frustrating jobs, she can allocate more time to the research, writing, and teaching she is good at, and spend fewer weekends and evenings at work.

In July 2021 the UK Government published a new five-year national autism strategy (HM Government, 2021). One of the strategy’s chapters is about supporting more Autistic people into employment. This is good to see, though it is light on detail about how this can be done. On the basis of our research and our experiences, we suggest that the recommendations from the evaluation of the Deutsche Bank internship (Remington & Pellicano, 2017) are likely to have wide application. Recognising everyone’s uniqueness, communicating clearly and honestly, raising awareness of different needs and providing support that can be accessed when needed are approaches that seem likely to work for many people in many contexts. Below, we provide some practical advice for supporting Autistic staff within your research team based on our experiences and reading. These points can serve as a discussion tool during meetings about Disabilities. Remember if you have met one Autistic person, you have met one Autistic person; we are a heterogeneous group with varying strengths and impairments. If you are an Autistic qualitative researcher, our advice may clarify what you should expect in the workplace. If you are struggling to get your needs heard and responded to, please seek the support of your union. Overall, we hope that our advice can support Autistic researchers and their employers to work together within a mutually supportive environment, leading to lower rates of staff turnover and happier working lives.

Creating employment conditions for the Autistic advantage to flourish

• Before any ‘problem’ is identified, ask about needs relating to communication and sensory issues, and meet them where possible

• Use direct communication

• Supplement verbal communication with written, for example, circulate an agenda prior to meeting

• Treat the individuals’ report of disabling symptoms seriously, even if you do not find those symptoms to be typical based on your knowledge

• If you are a manager of a Disabled person, it is usually your responsibility to advocate for the adjustments they require

• Remember, Disabled and neurodivergent people are a heterogeneous group

• It is essential for managers of Autistic staff to consider the views and requests of the individual Autistic person working for them; this is something that absolutely is not ‘one size fits all’.

• Requests made by an Autistic person may sometimes feel like a thing that is ‘nice to have’ to a neurotypical person, but they are likely to be truly necessary for an Autistic person to work to the best of their ability

• Be sensitive to data protection laws; never share details of Disabilities without permission

• Identifying and implementing adjustments may take effort, but will increase productivity

  • o Disability policies may be rooted in ableism, and may not account for neurodivergence

  • o Within universities, not all Disability Services are open to staff, but in our experience they are generally open to graduate students

  • o Occupational Health staff are unlikely to be expert in neurodivergence

  • o There are experts in neurodivergence who are able to provide bespoke work-place assessments

  • o In the UK, students (including graduate students) are eligible for financial support to fund adjustments through Disabled Students Allowance

  • o In the UK, Access to Work assessments and support are available to those with a diagnosed Disability (including Autism, Dyslexia and other forms of neurodivergence)

• Flexibility is also beneficial; what a Disabled person can do on one day, they may not be able to do on another day; we Disabled people are the experts on our energy levels and fatigue

• If adjustments are removed, or not working properly, Disabled people are likely to be less productive, or to use more energy to compensate, putting us at risk of ‘burnout’

Conclusion

Expecting everyone to fit right into a pre-existing work environment, and rub along happily and productively together, is an ableist approach (Martin, 2020). Working in diverse teams is challenging; however, including different perspectives can create opportunities for new learning and understanding (Martin, 2020). We have argued here that Autistic researchers have a number of strengths to bring to a qualitative research project or team. To facilitate this, we have given some pointers about how to include one or more Autistic researchers. We hope this will serve as a stepping-stone towards greater workplace equality and increased job satisfaction for everyone.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Correction Statement

This article has been corrected with minor changes. These changes do not impact the academic content of the article.

Additional information

Notes on contributors

Aimee Grant

Dr Aimee Grant is a qualitative researcher at Swansea University's Centre for Lactation, Infant Feeding and Translational Research (LIFT). She is the lead of funded research projects aiming to understand Autistic experiences of infant feeding, and the use of Autistic Health Passports within maternity care, as well as an ESRC funded project using citizen science to understand the safety of Infant Formula used within the home. She writes about qualitative research methods, including books on documentary analysis for Routledge (2019) and Policy Press (2022).

Helen Kara

Dr Helen Kara FAcSS has been an independent researcher since 1999 and an independent scholar since 2011. She writes about research methods and research ethics, and teaches doctoral students and staff at higher education institutions worldwide. Her books include Creative Research Methods: A Practical Guide and Research Ethics in the Real World: Euro-Western and Indigenous Perspectives for Policy Press, and she has written and edited several other books for Policy Press, SAGE and Routledge. She is an Honorary Senior Research Fellow at the University of Manchester, and a Fellow of the Academy of Social Sciences.