Unknowing in Practice: The Promise of Discomfort,Failure and Uncertainty in Neurodiversity Studies

Abstract

I started studying autism a decade ago as a neurotypical, non-disabled graduate student with a clear idea of what autism is. Since then, pretty much everything I thought I knew about autism, and indeed myself, has largely unravelled. A sense of lacking legitimacy in researching autism as a non-autistic academic – particularly within Critical Autism Studies with its commitment to experiential knowledge – further made for a research journey exemplified by a near-paralysing sense of discomfort, failure and uncertainty. Initially experiencing these sensations as barriers to working in the field, I gradually came to see them as productive and necessary elements of ‘unknowing’, a potential methodological and ethical approach to autism and Neurodiversity Studies. Here, I describe how I came to this way of thinking before briefly sketching out a tentative notion of what unknowing might be and do. While a few scholars have pointed to the ethical and methodological interest of forms of unknowing, none to my knowledge has suggested in simple, concrete terms some ways it might be operationalised in research. For this article, I therefore lean largely on personal experience and focus more on practice than on theory.

Lay Abstract

I started studying autism 10 years ago as a neurotypical, non-disabled graduate student with a clear idea of what autism is. Since then, I have had to rethink everything I thought I knew about autism, and indeed myself, which has been an uncomfortable experience. Being a non-autistic academic working within Critical Autism Studies, which puts a high value on experiential knowledge, was also often unsettling, and throughout my research process I felt a sense of discomfort, failure and uncertainty. Initially, these feelings were so unpleasant that I considered leaving the field. However, I came to think of them as an important part of what could be called ‘unknowing’, a way of approaching autism and Neurodiversity Studies that could help researchers avoid stigmatising neurodivergent people in their research and create new knowledge around neurodiversity. In this community perspective article, I use my personal, academic and professional experience to describe my thinking about this, and how other people might be able to put ideas they find useful into practice.

Discomfort, Failure and Uncertainty: Towards Unknowing

Many academics will be familiar with the discomfort brought on by drinks-party-type questions about their research. The ideas that felt exciting, clear and important when you were thinking or writing about them just this morning suddenly sounding – even to you – fatuous and obscure when said out loud in a room full of people that don’t share your (admittedly intense) interests. The realisation (later, too much later!) that the ‘how interesting’ muttered by your cornered interlocutor does not actually express a desire for yet more interesting information about, say, epistemic injustice, but an ever-diminishing hope that someone will extricate them from this unwanted and unnecessarily lengthy and murky interaction. However, when my own academic journey with autism started ten years ago, I had little difficulty in answering questions like ‘yes, but what actually is autism?’ over a gin-and-tonic and a cheese puff. A few choice quotations from the Diagnostic and Statistical Manual of Mental Disorders, and we were done, to everyone's satisfaction. I clearly knew what I was talking about: I was an expert-in-the-making.

A decade later, though, now with a PhD in the field, the best I can generally manage in response to that same question is a nervous smile and a mumbled ‘well, I suppose it sort of depends on who you ask really’, confirming my listener's worst preconceptions about academia: ‘Ten years studying autism and this is the best he can do? This is where my taxes are going?’ The further I went into autism research and then neurodiversity more broadly, the less sure I became of what I knew, or perhaps the more I was aware of what I – and indeed a large proportion of people working in the area – do not know. Either way, I moved from expert-in-the-making to a near-perpetual state of bafflement. I failed resoundingly at gaining certitude.

This failure was coupled with a sometimes near-paralysing sense of discomfort at my own lack of legitimacy as a non-autistic researcher doing autism research, particularly within Critical Autism Studies (CAS), where debate about the place of non-autistic researchers is rife. Over a decade ago, Arnold (2012, p. 1) expressed his frustration that autistic researchers ‘are swamped out by the non-autistic researchers, beating us to press and dominating the conference scene’, a sentiment still shared by autistic scholars and activists. Recently Elmadagli (2023, p. 75), for example, noted the risks of tokenism, and of ‘colonisation’ of autistic epistemic spaces, going on to suggest that ‘limiting the influence of non-autistic scholars within CAS might have to be considered’. None of this makes for a comfortable theoretical home for a non-autistic researcher who relates strongly to the ethical and methodological ambitions of CAS.

Indeed, I had been largely attracted to CAS through a belief in the importance of research not just including but often taking as a starting point the importance of lived experience. Much of my day job revolves around promoting the meaningful inclusion of people living, like me, with HIV in research and clinical practice in the HIV clinic of the Swiss university hospital where I work as a researcher and project manager. This is a frequently disheartening task in a biomedical environment that too often pays lip service to the ‘inclusion of patient voices’ as a way of accessing funding and publication, even as those same voices are delegitimized on the basis that they are, well, patients, and so lack the assumed objectivity of medical research. I find myself relating powerfully to autistic academics in similar situations within academia (see, e.g., Botha, 2021). Indeed, as things stand, I even wonder if participatory research, in a climate where it is increasingly expected and called for while sometimes being carried out by researchers who may neither understand its methods nor adhere to its underlying principles, does not pose as many problems as it answers, as is borne out by Tan et al.'s (2024) review on reporting of community involvement in Autism journal. Further, I am increasingly worried, with Orsini (2022) and Broderick & Roscigno (2025, p. 9) at the ‘liberal inclination to simply supplant ‘expert’ knowledge with the subjugated knowledge of autistic knowers’. None of this made CAS a serene theoretical home, and I found myself working in an almost constant state of discomfort. In short, my research journey has been exemplified by a sense of discomfort, failure and uncertainty.

However, after living for several years with my research participants’ narratives, receiving a diagnosis of ADHD, and reflecting on my other decades-old diagnosis of HIV, I started rethinking my own relationship to disability (Jackson-Perry, 2024a). I found myself informally coding my own feelings, thinking through discomfort, failure and uncertainty in the light of the work I had produced and the journey I had undertaken. They felt increasingly omnipresent: indeed, they seemed to constitute one of those ‘themes’ which Wright Mills (2000, p. 216) says are recognisable because ‘they keep insisting upon being dragged into all sorts of topics’. I felt that the theme that best represented them or held them together was that of unknowing, and I began to think that anything of value I might have stumbled on in my research was not despite the discomfort, failure and uncertainty, but in large part due to them. The discomfort that had felt for so long like a barrier came to feel like perhaps the most productive position from which a (or at least, this) non-autistic autism researcher could approach their work: unknowing began to feel like a methodological and ethical tool. But how am I understanding unknowing here, and what might it look like in practice?

What Might it Mean to Unknow?

In Who needs to (un)know? On the generative possibilities of ignorance for autistic futures, Orsini (2022, p. 1) elegantly lays out how a ‘newly invigorated “critical” autism studies could foreground a project of ignorance to catalogue the varieties of unknowing that can recenter and remake autism’. As the title of his article indicates, while Orsini refers to the ambition for a ‘vigorous movement to flood the institutions that govern autism with the many ways in which autism must be unthought’ (p.12, italics added), he places unknowing side by side with another noun, ignorance, often using the two words interchangeably. He therefore appears to position unknowing in relation to or within agnotology, the field of study concerned with ignorance. Agnotology seeks to understand and ‘question the naturalness of ignorance, its causes and its distribution’ and considers ignorance not as a simple lack of knowledge, but as culturally produced and maintained, as serving certain interests, as being ‘brought about by neglect, forgetfulness, myopia, extinction, secrecy, or suppression’ (Proctor & Schiebinger, 2008, p. 9).

The exploration of ignorance that agnotology carries out is of course central in thinking critically about autism studies, in which so much ‘knowledge’ is presented as fact while being highly contestable and contested. However, while unknowing might indeed include something I discuss below that could be called ‘strategic ignore-ance’ or ‘choosing to remain strategically ignorant of what is assumed to be known about autism’ to avoid being blindfolded by accepted wisdom (Bertilsdotter Rosqvist & Jackson-Perry, 2024, p. 451), this is not analogous to ignorance but rather a response or a resistance to it. Orsini (2022, p. 9) further suggests provocatively and satisfyingly queerly that ‘ignorance in its profoundly strategic (and cunning) sense’ can be seen as a way of ‘disrupting conventional understandings and ways of being autistic’, thereby, as Broderick & Roscigno (2025, p. 9) note, ‘invit(ing) and highlight(ing) a uniquely CAS orientation to the making and unmaking of knowledge’. However, both CAS and variations of queer theory on which Orsini largely draws arguably have a tendency more to exciting and provocative theoretical labour than concrete methodological guidance. It is not clear how unknowing might be operationalised by a novice autism or neurodiversity researcher in the absence of a more complete – and perhaps a slightly less theoretical – discussion of unknowing as practice in the research process.

The practice of unknowing I am thinking of is not a state or a thing, not a noun, like ignorance, but decidedly a verb, an orientation, an ambition to stay with the discomfort, to re-imagine and embrace failure as holding creative potential, to sit with uncertainty rather than cling, for example, to disciplinary authority, whereby the domination of positivist psychology positions autistic people as being little more than an accumulation of deficits (Yergeau, 2018; Botha, 2021). The most obvious example of this is surely the ‘supposed lack of a Theory of Mind’ attributed to autistic people, the ‘sheer force of which’ is ‘difficult to ignore’ (Orsini, 2022, p. 10). The damaging and long-standing domination of the construction of autistic people as being ‘mindblind’, as lacking Theory of Mind despite a considerable body of research that contests this (see, e.g., Gernsbacher & Yergeau, 2019; Leudar & Costall, 2009) is made possible by the disciplinary force and often unquestioned assumptions of psychopathology. How then might we get off the epistemic hamster wheel of confirming what we already (think we) know? How might we avoid reducing calls for change in autism research to the ‘liberal fantasy of authentic or meaningful participation’ that Orsini (2022, p. 6) warns of? How might we put the verb ‘to unknow’ into practice?

Practices of Unknowing

Practising Discomfort

Botha (2021) has written movingly and comprehensively about the extreme discomfort felt as an autistic autism academic, largely through being relentlessly exposed to litanies of deficit-based and dehumanising research assumptions about autistic people that dominate much existing research. This is decidedly not the type of discomfort that I am talking about here, but rather one that may contribute to reducing it. Discussing anthropologist Katherine Dunham's work in Haiti, Magloire (2019, p. 8, original italics) notes that Dunham ‘highlights discomfort because discomfort is not just something she does feel as a woman anthropologist but something any outsider to a culture should feel’. For Dunham, the alternatives to this ‘are a false sense of mastery or an easy elision of the power differentials between anthropologists and informants’. It is this false sense of mastery – and the ethical and epistemological vices that accompany it – that leaning into our discomfort may help to correct, and Dunham ‘both chooses and avows’ an ethics of discomfort. My own discomfort, my sense of illegitimacy working in a framework of CAS as a non-autistic researcher – an outsider – was so, well, uncomfortable, that I considered leaving autism studies altogether. At some points in my research process, it felt as though I was muzzling myself, as though I didn’t have the right to my own thoughts or words. Gradually, though, this felt like a step, part of a learning curve. I now see that this discomfort functioned as a motor, pushing me to engage intensely with autistic communities, lay-people and colleagues, to listen and then to collaborate. Without leaning into this discomfort, both my research journey and my life would have been the poorer.

All researchers, regardless of neurotype, can practise discomfort in various forms. Raymaker & Nicolaidis (2024, p. 431) warn against ‘dogmatic adherence to narrow conceptualisations of neurodiversity or any one paradigm or methodology, or to reject any simply because it was used by someone to marginalize neurodivergence in the past’. This engagement with fields or disciplines with which we might not, to put it kindly, be in sympathy, could take the form of what Parker (2024, p. 1) calls ‘adversarial collaboration’. Parker outlines the steps this might entail, including ‘(1) identifying the precise points of disagreement; (2) agreeing on what evidence would resolve the dispute; (3) collaborating to gather that evidence; and (4) publishing the results jointly, regardless of whose hypothesis is supported’. A recent – and rare – example of something like this is a paper by Suckle et al. (2025, p. 1), a discussion between critical autism scholars and applied behaviour analysts that the authors describe as a ‘cautious collaboration between these two apparently opposing group’. As Tan (2023) points out, these very tensions present us with opportunity. While it is likely to cause some controversy, this is a brave and complex undertaking, bringing nuance to an area generally associated more with mutual misunderstanding and blanket rejection than with dialogue and the building of trust. Conflict, to borrow from the title of one of Sarah Schulman's books (2016), is not abuse: here it is productive, potentially part of a process of repair. This is also a good example of why discomfort is not to be avoided but embraced. Leaning into the inevitable discomfort of putting these unlikely bedfellows under the covers together in adversarial collaboration has resulted in something that has never been done before: how many of us get to say we have done that?

Practising Strategic Ignore-ance

Autism research is full of assumptions of what we ‘know’ about autism, with a large proportion of autism researchers endorsing ableist or dehumanising language, leaning on medical narratives over social and persistently associating autistic people with outdated and prejudicial stereotypes (Botha & Cage, 2022). As research tends to build on existing published studies, this risks foreclosing new knowledge. If we accept that ‘in our tendencies to self-deception, wishful thinking and other evasive strategies’ we are not necessarily knowable even to ourselves (Smith, 2016, p. 281), how much more interesting and potentially productive to approach others with a process of unknowing, to ‘reorient ourselves to other people as unknowable, as a mystery’ (p.280)? What might this mean in practice?

As Murray et al. (2005, p. 140) suggest, rather than ‘attempting to establish new facts about autism’ we might start by ‘trying to interpret what is already known’. Going back to sources, consciously practising unknowing the assumptions on which their hypotheses rest – strategic ignore-ance – and coming with a new eye to what results might suggest if we did not ‘know’ about, for example, deficit in Theory of Mind or deficit in management of social reputation might reveal possibilities for ‘re-knowing’ that are otherwise left unexplored. For example, an article I discuss elsewhere (in Jackson-Perry, 2024b) states ‘it is well-known that autistic people have a deficit in managing their social reputations’. The authors then note that autistic people give more to charity when they are not observed than when they are observed, whereas non-autistic people give more when an observer is present. The authors go on to use this finding to confirm what they already ‘knew’, that ‘autistic people have a deficit in managing their social reputations’. Had the authors not gone into their study knowing what they did, how might they have interpreted their findings differently? Higher levels of altruism in autistic folk? Social conformity surplus in non-autistic people? Here, I rejoin Orsini's (2022, p. 3) proposition of ‘an (anti)agenda for autism that seeks to destabilize how expertise has been mobilized to know autism’ through ‘(E)ngaging critically with autism nonautistics…to come to terms with not only that which is not known – those dreaded knowledge gaps or lacuna – but what needs to be unknown’. Indeed, we could go further than this to revisit and even turn on their heads certain foundational concepts from a neurodivergent standpoint, as Milton & Sims (2016) do with notions of quality of life, or Jackson-Perry & Rosqvist (2024) attempt by redefining ‘inclusivity’ to mean the inclusion of neurotypical scholars by neurodivergent folk rather than the other way round. Importantly, this is not a call to legitimise pseudo-expertise, such as that used to promote harmful theories linking autism with vaccines, for example, but for reflexive, value-driven re-examination of theories that may cause epistemic harm to neurodivergent folk.

Practising Mindful Citation

When discussing Theory of Mind or social reputation management deficit, where possible I do not reference proponents of those theories, but their critics. In this, I draw on feminist theorist Sarah Ahmed's ‘blunt citational policy’ of not citing those she sees as ‘part of the institutional apparatus of white men’ (2017, p. 270). This allows her to follow what she calls ‘desire lines’, paths of thinking other than those we are expected to follow, or that simply reproduce what is already assumed to be accepted knowledge. I recently reviewed an article that noted in passing that few studies have approached autistic sexuality other than through a prism of deficit, but failed to cite those that had, thereby only giving citation space to deficit-based theories, which was very much not the intention of the authors. Rightly or wrongly, levels of citation stand in as a proxy for impact and therefore function to accentuate influence: citing Baron-Cohen on Theory of Mind, for example, adds to the weight of his (already over-weighty) words. It is difficult to ignore Theory of Mind, if only to refute it, but how about citing research that critiques it, rather than that which propagates it? Being mindful of whom we cite and why rather than reflexively conforming to academic convention reassigns importance and focus. Bucking academic convention may feel like risky business: but maybe risky business is exactly what is needed as a counterweight to business as usual.

Similarly, looking outside the academy to engage with and cite work produced by neurodivergent lay-people, advocates and scholars publishing outside academic journals holds considerable potential to unknow, or to re-story, with advantages to both ethics and knowledge production. As Zisk (2024) points out, ‘citations of blogs may not be typical – but typical ways of doing things lead people to repeat those same ways, or one way of study being dominant can lead people to think it's the only way’. Calls for Critical ADHD Studies, for example, were explicitly present in blogs (e.g., Dieuwertje Huijg, 2021; Meadows, 2021) before or concurrently with being formalised in academic writing, and Fergus Murray's blogs (no date) bring flights of fancy such as their reflections on ‘Weirdmisia’, and fascinating insights into neurodiversity and monotropism that arguably go beyond what the constraints and conventions of purely academic writing may permit.

Failure, Play and the Importance of Stupidity OR Doing Research Like a Neurodivergent Mind

I initially came to the notion of unknowing as an individual trait, whereby through various cognitive and neurological pathways:

autistic people may have an advantage when it comes to representing the world around them (and so, perhaps, themselves) in ways that are not considered ‘possible’ according to categories of sexual and gender norms (Walsh & Jackson-Perry, 2021, p. 54).

I had previously drawn on queer theorist Halberstam (2011, p. 2) to suggest that rather than accept the various assumed deficits generally used to explain why so many autistic people identify outside sexual and gender norms, we instead embrace their ‘failure’ to conform on the basis that ‘failing, losing, forgetting, unmaking, undoing, unbecoming, not knowing may in fact offer more creative, more cooperative, more surprising ways of being in the world’. Autistic failure to correspond to (hetero)sexual and (cis)gender norms could partly be explained as a refusal to conform to the ‘imperfect system’ that polices those norms (Jackson-Perry, 2020) rather than yet another manifestation of autistic deficit. Following this train of thought – however tentatively – takes the research spotlight away from assumptions of deficit and shines it instead on the often nonsensical and justifiably incomprehensible nature of sexual and gender norms themselves (see Davidson & Tamas, 2016; Kourti & MacLeod, 2019).

Similarly, research looking only to confirm what is already known can be seen as another imperfect system, and so failing to do research ‘properly’ might be its own type of success. Raymaker & Nicolaidis (2024, p. 429, italics added) remind us that:

Epistemology is multiple, simultaneous and fluid. Science celebrates all ways of knowing. Like neurodivergent minds, researchers may move fluidly between different epistemologies, acknowledging their simultaneous, nonlinear and associated truths through many philosophical lenses – or allowing the multiplicity to exist while focusing on a single point within the larger universe through a single philosophical lens.

We could consciously set out to do research like a neurodivergent mind, to (hyper)focus on what catches our mind's eye, to decide to fail at conforming to imperfect systems, to juggle with shiny new ideas and revisit old ones. Hoeyer & Winthereik (2022, p. 228) propose ‘playfulness’, meaning:

to dare to leave the path you know – as well as to dare to return to ‘old’ insights, those that are no longer in fashion, when they can help us approach a problem from a new, or a forgotten, angle.

Unknowing, then, not a lack of knowledge, but an intentional, creative, curious and playful act rejecting assumptions and shining a light in obscure corners, can be worked at by practising research ‘divergently.’

This divergent playfulness, if we do it right – or perhaps, better, wrong–might bring us to the ‘crucial lesson’ that Schwartz (2008, p. 1771) learnt: that ‘the scope of things I didn’t know wasn’t merely vast; it was, for all practical purposes, infinite’. And in the face of this realisation, the ‘only possible course of action is to muddle through as best we can’, to celebrate our ‘productive stupidity’, to ‘bumble along, getting it wrong time after time’. The more comfortable we become with our own stupidity, Schwartz concludes, ‘the deeper we will wade into the unknown and the more likely we are to make big discoveries’. Big discoveries or not, embracing our own stupidity may at least help us avoid the cognitive biases that make us consistently over-confident – ignorant rather than unknowing – of our own awareness, our ‘unwillingness or inability to admit to how little one knows’ (Smithson, 2022, p. 382).

Conclusion

If unknowing of the type I have described briefly here can be operationalised by other non-autistic researchers more purposefully, consciously and playfully than I was able to do at the time, their discomfort might feel less paralysing than I sometimes found it. It might, too, enable them to move away from confirming what we ‘know’ about autism, and ‘allow for visionary insights or flights of fancy’ (Halberstam, 2011, p. 6) that are shut down by disciplinary silos and their a priori assumptions of deficit. There are already examples of what unknowing can accomplish, although they were not framed in this way: Murray et al.'s (2005) revisiting of deficit-bound diagnostic criteria to produce the notion of monotropism; Suckle et al.'s (2025) dialogue with applied behaviour analysts, Milton & Sims (2016) reimagining of the criteria for a ‘good life’; Jackson-Perry & Rosqvist (2024) turning inclusion on its head to mean inclusion of neurotypical scholars; all these are results of forms of unknowing. Unknowing is not new but hopefully provides a useful framework for collating and understanding these forms of knowledge creation as part of an epistemic whole rather than as lone voices in the wilderness.

While I have largely concentrated on autism throughout this article, as pointed out elsewhere various forms of neurodivergence (such as ADHD, multiple neurodivergence, acquired brain injury and more) could benefit from a similar paradigm shift as that offered by CAS (Rosqvist & Jackson-Perry, 2024). One of the authors in Naming ourselves, becoming neurodivergent scholars (Bertilsdotter et al., 2023, p. 140) describes ‘re-storying the ADHD academic self’ as the ‘transition from a “broken neurotypical scholar” into a “neurodivergent scholar”’. The first story – this is how you do research, and if you don’t/can’t then you are broken – is poked at and unpicked before yielding to a new story, a re-story. Perhaps the process of unknowing points to the possibility that doing research like a neurodivergent mind could be a useful ambition, whatever our neurotype. Perhaps leaning into our discomfort, re-orienting to others as mysteries, practising strategic ignore-ance, thinking carefully about who, what and why we cite and looking outside traditional sites of academic research can all contribute to creating both new knowledge and a less hostile research environment than the one Botha (2021) describes. Unknowing, in short, is as much an ethical and political as a methodological proposition.