Ethical navigations in participatory action research with students: reflections on a pilot study

Abstract

This research note presents reflections on some of the conceptual, methodological, and ethical considerations and questions that emerged from a pilot study for a larger-scale research project that aims to explore and understand the needs of neurodivergent students (here specifically students with attention deficit hyperactivity disorder, autism spectrum disorder, and dyslexia) in higher education in the United Kingdom. The pilot study uses participant action research with a small group of undergraduate students. The research note presents a personal reflective account of research experiences, and provides critiques and considerations surrounding the conceptual framings of the project and its methodology, particularly the use of the neurodiversity model as a conceptual foundation, and the use of participant action research when collaborating with students.

I once described the process of concentration as like looking at an image in a shattered mirror. I could vaguely make sense of the image, but trying to see it as a coherent, singular thing sent my brain into a frantic scramble, darting between all the disparate parts. Sometimes, I could see a pattern emerge and the excitement of seeing that pattern drove me to painstakingly glue the pieces back together. Other times, most of the time, the image remained a jumbled mess that I tried to sweep up into one passable pile. As a student, and then as an early career researcher, I said that I just worked very well under pressure, leaving out that I needed that pressure to even attempt to work. It was not until I was several years out of my PhD and into life as an academic that I was diagnosed with attention deficit hyperactivity disorder (ADHD) – and then I began to wonder how much easier my earlier academic life would have been if I had not been scrambling to fit into a learning and working structure that felt so out of sync with how I actually learn and work.

Neurodivergence, a complex term discussed later in this note, refers to a range of conditions that describe individuals who diverge in some way from a neurotypical ‘norm’, and includes autism spectrum disorder (ASD), ADHD, dyslexia, dyspraxia, and others. Being diagnosed with ADHD meant that I was able to understand myself, and the difficulties I experience(d) learning and working in higher education, as someone who is neurodivergent operating in a neurotypical world. As such, the starting point for the project was this: that higher education institutions in the United Kingdom are designed, in terms of curriculum and infrastructure, based on the assumption that students are neurotypical (see Farrant et al., 2022; McDowall and Kiseleva, 2024). Students who are not neurotypical, but rather neurodivergent, are therefore treated as anomalous, with additional measures and special accommodations (sometimes, and in theory) made available to them. This is despite estimates that between 10% and 30% of higher education students are neurodivergent (Schaefer and Sanchez, 2024). I caveat this point about accommodations because there are requirements that students typically need to meet, including a recognised diagnosis, to access support. Additionally, not all students may be aware of the accommodations to which they are entitled – there is a degree of institutional knowledge required by neurodivergent students to know where to go and what to ask for. Because not all students have access to an accepted diagnosis, or will be aware of what support they require, or where they can access this support, there are some students who will ‘fall through the cracks’ entirely, or whose difficulties will not be recognised until they are already struggling or suffering. While the problems of support for neurodivergent students in higher education is noted in the literature (McDowall and Kiseleva, 2024), this struggle was something I noted repeatedly in my own teaching practice. Even where students have accepted diagnoses, and have support plans in place, some experience pressure or fear stigmatisation such that they attempt to ‘push through’ without taking advantage of additional support. All of these factors create additional barriers for neurodivergent students to fully access higher education. This project therefore imagines a different university, one that assumes that all students were neurodivergent, rather than neurotypical. What would such an institution look like?

Participatory action research (PAR) is an approach to research that centres the voices, experiences, and agency of individuals as co-producers of knowledge. As a methodology, PAR is primarily concerned with facilitating socially just outcomes and the empowerment of communities (Tanabe et al., 2018: 282). This research note explores some of the conceptual, methodological, and ethical considerations and questions that emerged from a pilot study for a larger-scale research project that aims to explore and understand the needs of neurodivergent students in higher education in the United Kingdom. The project has been conceptualised in line with critical disability studies (CDS) and critical pedagogies. The initial thinking around the project began with Adair's (2015) pedagogy of access. Adair (2015: 464) uses the accessibility of bathrooms to engage ‘questions of non-normative embodiment and histories of inclusion/exclusion from academic spaces’, highlighting the requirement for institutions to consider the physical accessibility of spaces to meet the material needs of students. How, we are invited to ask, can our institutions claim to be accessible and inclusive if students are not able to access a bathroom? To make a truthful claim towards accessibility and inclusion, the material needs of students must be met as soon as they enter the space. This research note presents some reflections on the use of PAR in the pilot study to understand these material needs, particularly around my own positionality, and some reflections and critiques of the ways in which neurodivergence in higher education has been conceptualised and framed.

CDSs and the neurodiversity model

This project sits at, and in some ways grapples with, the conceptual intersections of CDS, critical pedagogies, and the neurodiversity model. Critical pedagogies refer to a dynamic and evolving set of pedagogical commitments, which at its core includes engagement with and empowerment of marginalised or excluded groups with an emancipatory aim (see Adair, 2015; Freire, 1970; hooks, 2003; Kirylo et al., 2010). CDS refers to a set of approaches that considers disability in terms of the political, social, and cultural (see Minich, 2016; Schalk, 2017). Minich (2016: 3) defines the methodology of disability studies as ‘scrutinising not bodily or mental impairments but the social norms that define particular attributes as impairments, as well as the social conditions that stigmatised attitudes in particular populations’.

CDS aligns in some respects with social models of disability. I use the plural here to indicate that while different social models of disability may centre different modes of social construction or production (see Goodley, 2017), there is at least some agreement that disability is not an inevitable category, but rather a product of social and cultural factors and structures. More specific to this study, the neurodiversity model aligns with social models of disability in that it views certain limitations that people may experience as being disabling when they are in tension with broader social norms and structures (Chapman, 2019: 375). The model holds that neurodiversity reflects the natural variations between human beings, and ‘a non-normative pattern of neurodevelopment’ should not inherently be considered undesirable (Rosqvist et al., 2020: 5). It rejects the ‘deficit view’ of neurodivergent conditions (Dinishak, 2016).

Neurodivergence or neurodiversity is not a monolithic category, either in presentation or in the experiences of individuals. The language used to capture, or label, peoples’ experiences is an immediate and strong example of this. Legault et al. (2021) argue that the term neurodivergent is exclusive, compared to the more inclusive ‘neurodiversity’. To refer to neurodivergence, they argue, is to deploy ‘normative vocabulary’ (Legault et al., 2021: 12846). Here I want to flag two concerns. First, there is contestation around the idea of difference rather than disability within the neurodiversity model, particularly for people who experience significant difficulties – Chapman (2019: 380) highlights that this is an important ethical consideration as to reject the language of, for instance, ‘disorder’ in favour of difference may misrepresent or erase the real suffering people may experience. While it would be unfair, as Chapman (2019) notes, to claim that the neurodiversity paradigm denies the existence of suffering, it is important to note that there are concerns and limitations to the model, including the language that can sometimes be used or rejected.

My second concern is where I bring myself to the language of this project – I personally have never felt at home in the language of neurodiversity and have rather adopted the language of neurodivergence to characterise my own experience. To speak of myself as neurodivergent has felt like a way of capturing what I would consider to be the highs and lows of life with ADHD. I have found myself repeatedly frustrated by the more common use of ‘neurodiversity’ as a polite stand-in for ‘neurodivergence’, and have personally rejected its adoption unless and until the term does the work it claims to do, which is to reflect that there is neurological diversity among humans. However, my personal view is not the only view, which raises the question for me of how to conduct research in this area with people for whom the language of neurodivergence may feel exclusionary and harmful.

Methods and approaches

Given its conceptual roots in CDS and critical pedagogies, the project is committed to principles of PAR, which requires the input of participants in the design of the research itself. PAR views research as inherently political, both in practice and outcome. PAR attempts to disrupt the traditional power dynamics of knowledge production, by centring participants not only in the generation of data, but in the design and agenda of the research itself (Reason, 1994: 329). PAR has two key aims – ‘to produce knowledge and action directly useful to a group of people’, and ‘to empower people a second and deeper level through the process of constructing and using their own knowledge’ (Reason, 1994: 328). Because PAR emphasises ‘the construction of expertise and validity through the life stories of those who experience oppression, rather than by the professional researcher or “expert”’ (see also Lenette, 2022: Vincent et al., 2017: 303), the power dynamics of traditional research agendas is at least disrupted, if not upended. As Hawkins (2015: 475) concludes, PAR moves us ‘beyond the binary of researcher/researched’. This is not, however, a given – Cooper (2023: 74) highlights Spivak's (1988) questioning of how much voice, or power, or agency, marginalised groups can really have, if their voice is itself shaped by the very systems that marginalise them. Each participant is a subject produced by multiple axes of power, privilege, and marginalisation, and their multiple subject positions are all brought to bear on their contributions to this project, as well as their capacity to navigate the institution in which we all gathered. There is no one, monolithic ‘participant voice’ (to paraphrase Cooper, 2023: 75). Navigating these dynamics is something I returned to, and will continue to return to, throughout the project, particularly around the ways in which I myself navigate the line between researcher and researched.

Collaboration with the impacted community is an essential part of PAR, but at times the project may be at least partially formed before there is a significant degree of engagement, or members of the community may be approached by researchers rather than the other way around (see Gustafson and Brunger, 2014: 998). In the case of this project, I had had off-record, informal conversations with colleagues and with students about the idea of the project and whether or not something like it would be useful, which was met with enthusiastic support. However, the funding proposal and ethical approval for the pilot study were not written in consultation with participants, largely due to time constraints related to specific timelines required for funding and institutional ethical approval (see Millar et al., 2025). This meant that the basic research design of the project needed to be outlined in advance of formal consultation with the participants, although it was discussed in the initial informal conversations. I was fortunate that both in the funding and ethical approval stages, I was met with enthusiasm and support for the use of participatory methods; additionally, because this was proposed as a pilot study to develop future research designs, I was allowed a reasonable degree of flexibility.

This pilot study was intended to inform how data generation will be conducted further down the line of the project, with me operating primarily as a facilitator (see Hawkins, 2015: 470). It involved conducting individual narrative interviews with a small sample of undergraduate students who self-identified as neurodivergent, followed by an optional focus group to discuss the future possible paths of the project. Student participants were recruited through other academic members of staff who had built pastoral relationships with them – they were informed of the project and invited to get in touch with me as the principal investigator for an informal conversation about the project ideas and aims. After the individual interviews, participants were then invited to a larger workshop to collaboratively generate ideas as to how the larger, main research project can and should be conducted. The workshop was intended to pick out how the research could be undertaken so that participants’ needs were met, both short and long term, and that it would also produce some kind of output that would directly benefit the participants.

Insider/outsider: ethics of PAR

Given the aims and conceptual underpinnings of the project, the use of PAR seemed to make the most sense – in designing a project that was meant to directly benefit students, it seemed the most obvious route to simply ask them what they thought would be helpful. However, this approach immediately raised a number of ethical concerns, and as Lenette (2022: 79) points out, the use of PAR does not automatically mean that the research, or the researchers, are inherently ethical. PAR can, however inadvertently, reproduce some existing power dynamics and hierarchies through the facilitation of some voices over others (Gallagher, 2008), which becomes more problematic if this is then presented as one monolithic story of ‘local expertise’ (Ansell et al., 2012).

Some of the concerns the study raised are reflected in other, similar studies (see Vincent et al., 2017). Vincent et al. (2017: 304) note in their use of PAR with students with ASD that the research involves a group potentially classified as vulnerable due to their being considered disabled, which is challenging to navigate in a project that is stepping away from a medicalised understanding of disability and specifically neurodivergence. This reflects other work on disability that problematises the assumed link between disability and vulnerability, and that the conflation between the two may limit the ability of participants to exercise agency (Gustafson and Brunger, 2014).

Engaging in PAR with students raises questions around potential limitations with the approach in certain specific circumstances. Existing work on participatory research in education and childhood flags that factors such as gatekeepers, or the institutional settings themselves, can foment exiting power dynamics (Horgan, 2017). In the context of higher education, there is an embedded power dynamic between staff and student that is difficult to disrupt, even though the students themselves are adults. As Vincent et al. (2017: 304) note, there is a limit to ‘the level of achievable empowerment’ on the part of the participants which they note specifically around hesitation to challenge or criticise members of staff who they may perceive as an authority figure. This power imbalance is likely to be more pronounced in students who have been historically excluded or marginalised in higher education (Vincent et al., 2017: 304). In this project, there was a marked initial hesitation on the part of participants to discuss problems they had encountered in specific classes or with specific educators, in contrast to their greater confidence in speaking about issues that were more general, or university-wide. Of course, the purpose of this project was not to generate a name-and-shame list of ableist individuals, but in a project that is built around the lived experiences of the participants, an expected outcome of that will be the recounting of specific events that illustrate their encounters with marginalisation and harm. As time went on, and especially in the group workshop, this hesitation diminished as individual experiences were validated as shared experiences.

How, then, do we as researchers committed to PAR create spaces where participants feel comfortable sharing their lived experiences, and in doing so are actively resisting the entrenched power dynamics in the room? To some extent, this can perhaps be facilitated through creating a sense of safety and community in the research space. In the pilot study, that often looked like giving space to conversations that were not directly related to the foundational, pre-determined research agenda, and allowing for ‘venting’ discussions around particular sources of frustration. It also looked like calling out specific experiences that I, as the researcher/facilitator, had in common with them, including being late, forgetting to send reminder emails about the project, and grappling with feelings of displacement and non-belonging in higher education.

Reflecting on my actions and negotiations in the research space here aligns with Lenette's (2022: 3) call for the importance of the researcher's statement of their own positionality in PAR, but these moments of transparency and reflection are also a part of broader understandings of situated knowledges (see Haraway, 2013) and recognising that our multiple social positions shape our research agendas (see Kinkaid, 2022). My identity is inseparable from this project – the personal is indeed political, and I make no claim to have even attempted to maintain the kind of detachment or distance from the research that are imagined requirements for what may be deemed objective, and therefore rigorous, research (see Harding, 2013). I came to this research with a clear normative agenda born of my own experience as an academic who was diagnosed with ADHD well into adulthood, and indeed approaching mid-career. Through receiving a diagnosis, I was able to give a name to multiple aspects of myself, personal and professional, that at times were sources of strengths but more often created significant difficulties that I was only able to appreciate with hindsight. Crucially, I was also able to access support, both institutional and medical. This access is a clear point of privilege, particularly in the context of the United Kingdom, where waiting lists for assessments have ballooned and private care for neurodivergence (particularly ADHD) is both expensive and regarded with scepticism. In addition to these classed exclusions, there are additional barriers some people may face according to their gender, race, sexual orientation, and gender identity, that further prevent people from being able to access care. The project emerged from a desire to limit the extent to which students experienced the same difficulties that I did, particularly given the struggles many neurodivergent people face with accessing diagnoses and support.

I noted in the above that the language of neurodiversity may not feel appropriate or useful for everyone, and this is something I spoke openly about with the participants, specifically that my own preference should not dictate theirs. On reviewing the transcripts of the individual interviews and group discussion, I noticed that the participants largely mirror my own language of ‘neurodivergence’ with no real mention of ‘neurodiversity’. I am left considering why this might have been the case – was this organic, or did I inadvertently silence the language of neurodiversity through my personal lack of usage? If it was the latter, was I perpetuating harm in the research space? Would the participants have felt comfortable calling me in on my own language, particularly given the pre-existing power dynamics in the room?

In addition to my discomfort with the language of neurodiversity and my understanding of myself as neurodivergent, there was my own confrontation with the idea of disability itself. Neurodivergence can qualify as a disability both in the United Kingdom and the United States; therefore, having been diagnosed with ADHD would legally classify me as disabled. That said, I have not typically thought of myself as disabled, and I feel uncomfortable with the idea of being a member of the disabled community as such. While this is at least in part due to my own positions of privilege, and so it feels disingenuous to speak of myself as marginalised, it is also likely to be a result of internalised ableism and being diagnosed well into adulthood. This ambivalence towards or at times outright rejection of the language of disability was reflected in the participants’ discussions as well. Even though much of the university-led support was actioned through the disability office, disability or experiences of being disabled were not explicitly mentioned.

Engaging with this research, particularly in conversations with participants, often felt like a dance of identification – the project itself was in part driven by a desire for students who may not be diagnosed to not struggle as much through their undergraduate years as I did, but those struggles somehow remained ephemeral in my memory until they were juxtaposed to the similar struggles the participants discussed. Much of the time it was only when the conversation revealed some specific events that I was able to think I remember that happening to me, and that was really tough. It was easier to think about the difficulties of navigating university as a neurodivergent student through the lens of someone else's experience, and much harder through the lens of my own. Students reflected on their hesitation to make use of some of the support mechanisms put in place by the disability office, such as extra time, or their frustrations with the effects of their neurodivergence, and often turned this frustration inward. As an educator these responses made me want to urge them towards self-compassion, to remind them that adjustments are there to level the playing field, as it were. As someone who is neurodivergent, I related directly to these experiences because they reflected my own. As a researcher, I felt caught in the middle in a way that reflects Lenette's (2022: 79) call for awareness of a changeable ethical landscape in research. Ethically, it felt crucial to be transparent about my own position and how it situated me within the research, but it was difficult to know how much this influenced the participants, and more difficult still to determine if this influence was wholly undesirable, or itself a means of co-producing knowledge in conversation.

Conclusions

This research note has primarily presented narrative reflections on the use of PAR in work intended to benefit and support neurodivergent students in higher education and the ethical and methodological puzzles that emerged, while also highlighting concerns and critiques around the use neurodiversity as a frame for this research. It has also provided a reflection on the neurodiversity model, the politics of the language that researchers use, and the potential impacts this can have on our research and our participants.

The extent to which the pilot study can be said to have successfully implemented PAR as a method remains for me an open question. While participants were invited to input into a future research design, the consensus was less about the future of the project and more about the immediate future of data generation of the pilot study. In some ways, this reflects the observations of Millar et al. (2025: 3), that the ‘action’ of PAR is primary to the ‘participation’ of PAR. It also speaks to other reflections on participatory methods that note the instability of power dynamics and relationships in research (Gallagher, 2008). Gallagher (2008) also invites us to consider the power featured in participatory research in line with Foucault (1982), where power is understood as dynamic and changeable, inviting multiple sites of both affirmation and contestation. The ethical and political puzzles and questions of PAR noted here – the importance and power of language, the difficulty of navigating institutionalised power structures—and their open and transparent discussion are crucial to the participatory nature of the project. A gentle recommendation from these reflections would be to encourage researchers working with participatory methods to, where possible, engage these puzzles as part of the research itself, in collaboration with participants.