Naming ourselves, becoming neurodivergent scholars

Abstract

In this paper we seek to restory what has been storied as “the problem of ADHD”. Informed by calls for a critical ADHD studies, we explore the possibilities of ADHD collective autoethnographic storytelling. Together we (en)counter narratives of ADHD. Within our collective writing space, from our ADHD/AuDHD bodyminds, we seek to re-story our ADHD/AuDHD. We map a field of critical ADHD research within social sciences and point out problems of outsider perspectives, stressing a need for insider perspectives. Our data consist of collective authoethnographic writings about ADHD. From the data we have explored our experiences of (En)Countering ADHD narratives, and a transition process which we refer to as from ”broken NT-scholars” to neurodivergent scholars, stressing the importance of ADHD:ers as independent as well as collective agents, and ADHD as epistemological standpoint within research.

Points of interest

• Attention Deficit Hyperactivity Disorder (ADHD) is commonly talked about by people without ADHD.

• People with ADHD (ADHDers) are important in knowledge production about ADHD.

• This research is based on writings about ADHD by researchers with their own experiences of ADHD.

• We talk about ADHD together and try to find new ways of talking about ADHD which is more matched with our own experiences of ADHD.

• We talk about experiences of ADHD stigma and possibilities of knowledge production about ADHD by ADHDers and groups of ADHDers.

Keywords:

• Critical ADHD Studies
• stigma
• diagnosis
• collective autoethnography
• epistemological standpoint
• ADHD

Introduction

I remember when (one of us) suggested that I had ADHD. At first, I thought it was ridiculous, then I got scared and then my mind went blank. I did not have anything to relate to, everything I had heard about ADHD before was impossible to relate to. (One of us)

The ‘everything I had heard about ADHD before was impossible to relate to’ emphasizes the lack of nuanced descriptions of the lived experience of Attention Deficit Hyperactivity Disorder (ADHD), as well as the urgency to gain legitimacy for experience-based knowledge. ADHDers inside and outside of academia have called for a new field of Critical ADHD Studies (Meadows 2021; Dieuwertje Huijg 2021). Meadows (2021) asks for ‘more analysis of the power dynamics at work in the ADHD world, more criticism of the research that is presented to us as fact in the media, more answers that affirm and empower us without politically pacifying us.’ (Meadows 2021). Dieuwertje Huijg (2021) asks for ‘a field of Critical ADHD Studies, which is ADHD-affirmative, intersectional, and produced by ADHDers themselves’. What is ‘critical’ in an emerging field of Critical ADHD Studies, may be contrasted to what commonly is described as ‘critical perspectives’ on ADHD; research informed by theoretical approaches from medical sociology (c.f. Conrad 2007). From a ‘critical’ perspective on ADHD, Lloyd, Stead, and Cohen (2006) among others have sought to ‘unpic[k] the myths surrounding the development of this phenomenon’, ‘leav[ing] no stone unturned in its search for answers’ (Lloyd, Stead, and Cohen 2006). These, critical perspectives, or what Wilson (2013) has referred to as perspectives ‘critical of the biomedical model of diagnosis’, formulates critical approaches to ‘the problem of Attention Deficit Hyperactivity Disorder (ADHD)’ (Radiszcz and Sir 2018), or even a ‘critical attack on the ADHD diagnosis’ (Foreman and Timimi 2018).

However, rather than continue contributing to this choir of critical perspectives ‘of the problem we call “ADHD”’ (Graham 2008), we want to re-story what has been storied as ‘the problem’, but also change the ‘we’ who is doing the storying (c.f. Bertilsdotter Rosqvist and Nygren 2023). In this paper, informed by the calls of Meadows (2021) and Dieuwertje Huijg (2021), we explore the possibilities of ADHD collective autoethnographic re-storying. As neurodivergent scholars, we (en)counter narratives of ADHD. Within our collective writing space, from our ADHD bodyminds, we seek to re-story our experiences of ADHD. We use term ‘bodymind’ as understood by Margaret Price (2015) as: ‘because mental and physical processes not only affect each other but also give rise to each other—that is, because they tend to act as one, even though they are conventionally understood as two—it makes more sense to refer to them together, in a single term.’

In contrast to the contexts of autism studies, where this re-storying is well under its way, the re-storying in the ADHD studies field has just started to emerge (see for example Robinson 2022; Goetz and Adams 2022). McGrath (2017) refers to ‘naming autism’ as the different processes in which behaviours or experiences have been represented as (or renamed) as ‘autism’. Referring to the sense of acknowledging ‘someone who moves like you’ in popular culture, Mullis (2019) has pointed out the strengths of a collective autistic fanbase reading or ‘coding’ fictional characters as autistic, even though they are not explicitly named as autistic or when the creators of stories don’t want their characters to be coded as autistic or agree with the coding of the autistic fanbase. Similarly, in the process of collective autoethnographic writing, we have written to our own ‘fanbase’. We are each other’s fanbase, telling each other stories, stories which we think about as an exploration of ADHD within us, between us, and in relation to neurodivergence and neurotypicality. What does it mean to name, to code onés own experiences as experiences of ADHD? In this exploration, we stress the importance of being named by ‘someone who moves like you’, who recognizes themselves and their experiences in your narrative, in comparison to being named from the outside, from an outsider neurotypical gaze (McDermott 2022).

The article is structured as follows. Initially, describe methods and our ADHD collective, autoethnographic re-storying process, where we try to re-story meanings of ADHD and in particular meanings of ADHD in ADHD knowledge production. After this, we map out what we have chosen to refer to as the field of critical ADHD research within social sciences. This field includes different research accounts of ADHD which can be seen as participating in a debate about meanings of ADHD. This is followed by a background situating our experiences in the Swedish context. The Swedish context is similarly informed by different debates about meanings of ADHD. This is followed by two main empirical themes that have grown out of our collective autoethnographic writing project: 1. (En)Countering ADHD narratives; 2. Transitioning from ‘broken NT scholars’ to neurodivergent scholars.

Method

We started this project departing from a shared experience of ADHD, albeit in different ways. Some of us have a formal ADHD diagnose (ADHDer). Some of us are formally diagnosed as ADHDer but also acknowledge their autistic traits (AuDHDer). Some of us are formally diagnosed as autists but also acknowledge their ADHD traits (AuDHDer). Some are predominantly inattentive, some hyperactive and some both. For some of us, ADHD is an integral part of our identity. Some of us are late diagnosed, where following neuroconventional norms have left wounds on our physical and mental well-being. McDermott (2022) has referred to ‘neuroconventional’ norms as ‘the norms and conventions of neurotypicality’; and this concept is therefore not associated with certain minds (or neurotypes) but rather a mindset (similar to heteronormativity). Some of us have had to fight for regaining health and the ability to remain in work life. Some of us have a history of explicitly targeting structures of power regarding neuroconventional norms, dis/ability and the promises of neurodiversity. For others, these experiences have not been as obvious, or un-reflected.

We came to this project with different identities and positionalities concerning gender, sexuality, race and class backgrounds, and with different research focuses/interests. We are located within academia across disciplines and different academic positions (Literary Criticism/Literary Composition, Education, Social work and Sociology) and geographical contexts within Sweden. We all have in common, albeit to a different extent, an emancipatory commitment to academic activism for social justice, e.g. through feminist, anti-racist, postcolonial, queer or other approaches. Some of us are well versed in the concepts and theories this article is based on, to some, the perspectives were new. We are professionally and/or socially connected to each other in different ways – some of us know each other, and some are new acquaintances. This is the first time we work together as a group.

Throughout, we mingle our own collective autoethnographic accounts in relation to research accounts and theories, as a way of illustrating the work with the text as thinking about ADHD with each other and in itself. We have chosen to refer to our own autoethnographic voices in the text with a collective ‘One of us’. This is a way of stressing the text as written in a collective space, the collective ‘I’ as ‘One of us’. ‘One of us’ is also used as an expression of a ‘joint action’ which feminist researchers Francis and Hey (2009, 231) have stressed as a ‘core to feminist action over the years’ but in particular within academia’ where joint action counter-narrate the position as ‘individual experts’. The use of a collective I, is a way to counter-narrate the image of ‘the sole’, individualized neurodivergent, and rather stress the presence of a neurodivergent togetherness but also to protect ourselves against structural violence and position ourselves– as a neurological minority (stigmatized) selves.

The project arose out of discussions between three of the authors about their interest in coming together and develop the emerging field of critical ADHD studies, responding to calls for ADHD-led research on ADHD (Dieuwertje Huijg 2021; Meadows 2021). The initial discussion around this text and during the ongoing co-working with the text made it visible to us how we all have had different experiences of working not only with concepts and theories within the broader fields of critical autism studies or neurodiversity studies (ed Bertilsdotter Rosqvist, Chown, and Stenning 2020), but also different experiences of working with our lived experiences, and acknowledge them as a source for creating knowledge and/or as a tool to do research and to generate new knowledge.

We use a collective autoethnographic method, which we refer to as ADHD collective re-storying (c.f Jackson-Perry et al. 2020), or our ‘ADHD stories’, to re-story ADHD. Throughout our collective autoethnography we explore ADHD both from an individual and collective point of view and in relation to research accounts and representations about ADHD we have encountered in the Swedish context. Although data include individual autoethnographic narratives, we stress the importance of the context of writing (c.f. Bertilsdotter Rosqvist, Chown, and Stenning 2020). Our data include our individual autoethnographic writings, in which we are writing to and being read by each other; another person with personal experiences of ADHD albeit in both similar and different ways. Our individual autoethnographic writings are being produced in an iterative writing process (c.f Jackson-Perry et al. 2020); we have both written our own stories as well as responded to each other’s writing. As an add-on to the writing, we also met up sometimes in Zoom and discussed our experiences of ADHD and the writing process. Through this collective re-storying, we have explored our experiences of the world from our different bodyminds and situated knowledge (Harding 1991) of ADHD, our different ADHD perspectives, and encountering each other’s storying. During this process, a gradual re-storying of our experiences emerged.

Enabling our ways of thinking and writing

After an initial digital meeting on Zoom where we presented ourselves to each other and discussed possible themes related to ADHD of interest to us, our writing started with one of us writing a text. At this first stage, there were no instructions beyond the themes discussed at the meeting or in association to an overall theme of ‘different experiences of ADHD’, but also with the encouragement of writing of the experiences of the writing and the research process in itself. This was a way to use our abilities of association thinking, to use our ‘spontaneous mind-wandering’ where the aim was to follow associations and write them down so that the rest of the authors would be able to follow different threads of thought. This included writing a first version of the text with no demands to make it ‘narrative coherent’ (c.f. Zenaro et al. 2019) for us all, just go on, be in onés own mind space, in the ‘deep flow’, with other words, ‘hyperfocus’ (HF) (Hupfeld, Abagis, and Shah 2019).

At the same time, there were no expectations of ‘linear writing’, before sending the text further to the next in line, each person was expected to go back to the text after that and ‘fill in the gaps’ or ‘skipped steps’. We wanted to enable all authors to write in their own ways and explore it and their ADHD stories in a safe space. In order to produce a sense of collective anonymity from the start, all of us wrote with different text-colouring in the document (to get a visual sense of our different voices), but no one signed their stories with their names. This ‘basic empirical document’ was circulated between all authors during two ‘rounds’ where all authors were adding ‘stories’ and wrote new stories in relation to and as responses to the previous stories. The creation of stories, the empirical data production, from the beginning produced a sense of intertextual intimacy. After the two rounds we met up in a second Zoom meeting where we discussed our experiences of the process and writing so far and the next steps in the process. The analyses are mainly based on the data from the ‘basic empirical document’. But during the process of writing and analyzing the data it has also been encouraged to ongoing add new stories and responses to stories. This positions this text as an intersubjective dialogue in its own right.

Narrating ADHD in critical research within social sciences

Within a field of critical ADHD research within social sciences, we have found three overall ADHD narratives. We will refer to the first one as ADHD as a social construct. Within this narrative, ADHD is represented as a product of a general ‘medicalization process’ (Bianchi et al. 2016) or ‘farmacologization process’ in society, partly as a response to changes in education systems, or ‘medicalization of education’ (de Cassia Fernandes Signor, Berberian, and Santana 2017; see also Stein 2013). This narrative is foremost critical against a second narrative, ADHD as a neurodevelopmental deficit where ADHD is represented as a cluster of cognitive deficits, located within the individual, an object of biomedical and behavioural interventions. However, both perspectives rely on a deficit, neuropathologizing approach to ADHD, stressing ADHD as a ‘problem’ – either for society (as in ADHD as a social construct) or for the individual and their closest surroundings (as in ADHD as a neurodevelopmental deficit).

Opposed to both narratives, a few studies acknowledge ADHD as a cluster of cognitive differences rather than deficits, in line with a neurodiversity paradigm (c.f. Goetz and Adams 2022; Hupfeld, Abagis, and Shah 2019). From this narrative, a depathologization of neurodivergent experiences, in this case experiences of ADHD is stressed (Goetz and Adams 2022), as well as people with ADHD as subjects and objects of ADHD and discourses of ADHD. We will refer to this approach as ADHD as neurodivergence. ADHD as a social construct is the most dominating narrative within a field of critical ADHD research and can be seen as a ‘master narrative’ within this field in relation to ADHD as neurodivergence which can be seen as a ‘counter-narrative’ (Nelson 2001). However, both may be seen as counter-narratives in relation to ADHD as a neurodevelopmental deficit as a master narrative within the broader field of ADHD research.

Peter Conrad’s classical case study concerning the medicalization of deviant behaviour based on the process of identifying hyperactive children, or the medicalization of ADHD, was originally published in 1976 (c.f. Conrad 2007) and may be viewed as the birth of ADHD as a social construct. Since then, Conrad with coauthors, has argued that ‘medicalization is by definition, about the extension of medical boundaries’. Over the years, several researchers have explored and participated in the broader debate about the ‘medicalization of childhood’ (Ortega and Müller 2020; Rafalovich 2013). Within the debate, there is a gap between on one hand ‘treatment’ (in line with ADHD as a neurodevelopmental deficit)– from which it is argued ‘that the condition is underdiagnosed and undertreated’ – on the other hand ‘medicalization’ (in line with ADHD as a social construct)– from which it is argued ‘that there is overdiagnosis and overtreatment and thus, medicalization of childhood’ (Ortega and Müller 2020). Rafalovich (2013) among others (see also Reyes et al. 2019) has argued that the debate around ADHD illustrates how children’s behavioural problems become understood as disease entities by medical professionals, which in turn stems from the transformation of children into objects of scientific study, as well as how medicalization is a locus of contradictions and epistemological disagreements. In opposition to critics of the medicalization, Singler (2015) has argued that ‘demedicalization of problems such as autism and ADHD have created narratives in which "Big Pharma" is seen as conspiring to create disorders, damaging vaccinations, and harmful genetically modified organisms’ (Singler 2015). Invoking ADHD as a neurodevelopmental deficit, in relation to opponents stressing ADHD as a social construct, Snyder (2001, abstract) has stressed ADHD is not a myth, bringing forth that ‘ADHD behaviors were described in medical literature a hundred years ago’ and ‘today ADHD is the most commonly diagnosed psychiatric disorder in children.’

Traces of what later on starts to evolve into ADHD as neurodivergence can be found in a study by Bringewatt (2011), suggesting that experiences of children diagnosed with ADHD ‘adds to research on the sociology of diagnosis and medicalization of mental health’. Bringewatt (2011) has explored how children diagnosed with ADHD learn about and experience their diagnoses, from the retrospective accounts of young adults who were diagnosed with ADHD in childhood. Bringewatt (2011, p. 274) notes ‘that children often experience both aspects of stigma and empowerment as they learn about and make sense of their diagnoses’, stressing the importance of exploring how the participants actively ‘made sense of their diagnoses over time’ with the support of different sources about the diagnoses (Bringewatt 2011). Similarly, Prosser (2015), stresses the value of more diverse sociological perspectives when looking at and exploring questions about the impact of ADHD, arguing that sociological-informed approaches to ADHD cannot solely be built upon societal and historical perspectives (in line with ADHD as a social construct), arguing that one-sided societal and historical perspectives positioning people with ADHD as merely passive objects of medicalized discourses and structures. Rather, he underlines the importance to look at ADHD identities from the perspective of ‘identity development as a dialectical process of interaction between individuals and social constructions’, including ‘the way that youth and families come to adopt, refine and use ADHD labels’. Where identity formations can be seen as ‘created by actors to negotiate contradictory demands of structure and agency’ (Prosser 2015, 650). Further, Reyes et al. (2019) have stressed the need for ‘rethinking medicalization’, arguing that ‘this perspective tends to overlook the meanings of diagnosis and treatment of ADHD for children and their caregivers.’ From the perspective of children and their caregivers, they have stressed that:

‘the subjective experience of the diagnosis and treatment of ADHD is not homogeneous, since different discursive positions, family and institutional understandings that enter into conflict cross it. The experiences of ADHD are shaped by discursive structures that condition the meanings of this experience. The medicalization process is not univocal, but can take different forms and have consequences on children’s experiences and social trajectories.’ (Reyes et al. 2019, 40–41).

Contextualizing our experiences of ADHD

Swedish researchers early on were engaged in what can be referred to as the Swedish diagnosis debate(s), mirroring the debate between proponents of ADHD as a social construct and ADHD as a neurodevelopmental deficit in research. The debate is a continuing, recurrent one, engaging researchers, professionals, media and the general public in Sweden since 1996 (Atterstam 2005) and is still ongoing. It mirrors or keeps on reproducing an ideological gap between researchers, professions and communities when it comes to rights of interpretation and epistemic legitimacy in meanings of ADHD and has material consequences (supporting different ideas of support and treatment). On one side are the ‘social constructivists’ consisting of researchers coming from a ‘sociology of knowledge’-perspective (Palmblad 2000; see also Börjesson 1997, 1999; Kärfve 2000) or a ‘critical medical sociological perspective’ (Lassinantti 2014) and allied sciences (foremost within special education, c.f. Hjörne and Evaldsson 2015). In line with the narrative of ADHD as a social construct, proponents of this side of the gap stress the social construction of diagnosis and challenges of medical labelling in general, albeit ADHD in particular. On the other side, Swedish researchers from psychiatry and allied sciences, approaching ADHD from a biomedical approach, early participated in international debates concerning the diagnostic criteria of autism and ADHD (ex Gillberg and Gillberg 1989). From this side of the gap, early discovery (diagnosis) and medical intervention is stressed in combination with school and workplace adaptations, training programmes, counselling and assistive devices (For a recent example of the debate see ex Jelmini 2023).

Among the most internationally influential researchers (and debaters in the Swedish debate) from this side are Gillberg, who 2003 introduced the notion of ‘DAMP’ (deficits in attention, motor control, and perception) (Gillberg 2003) and 2010 introduced the notion of ‘ESSENCE’ (Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examination, Gillberg 2010). Autistic people and ADHDers in Sweden are commonly lumped together under the umbrella of ‘neuropsychiatric disabilities’ (NPF) including ADHD, autism, Tourette’s syndrome and speech and language impairments (such as dyscalculia and dyslexia). NPF was introduced by Gillberg as a Swedish translation of his concept ESSENCE. This is an umbrella commonly not used outside of Sweden but its international equivalent is the DSM 5 (APA, 2013) ‘neurodevelopmental disorders’. ESSENCE mainly cover what currently goes under the umbrella neurodivergence in Anglo-Saxon community contexts. Gillberg among other Swedish researchers was also early on engaged in translating and spreading their results in established Swedish autism and ADHD movements. These established movements have been mainly led and dominated by professionals and parents and where the influence and leadership of neurodivergent people have been a dilemma (c.f. Bertilsdotter Rosqvist, Brownlow, and O’Dell 2015). The most dominating Swedish NGO within the ADHD advocacy movement is Riksförbundet Attention (Eng: The National Association for People with Neuropsychiatric Disabilities). Albeit run by both professionals, parents and ADHDers the organisation is heavily influenced by the strand of Gillberg and is commonly advocating for a biomedical approach to ADHD and stress the importance of following the lead of health professionals in areas outside of psychiatry and health care such as the school. For some years ADHDer communities in social media have become more visible (c.f. Simpson, Dalal, and Semaan 2023). In blogs, vlogs (such as TikTok), podcasts and Facebook groups ADHDers express different perspectives on ADHD, albeit commonly from critical perspectives of proponents of ADHD as a social construct. Some of us are engaged in Attention, and some of us are engaged in different social media venues (including Facebook groups for ADHDers). From the experience of Facebook groups for ADHDers, one of us notes:

there is a need to talk about and share onés experiences, especially when one’s own experiences do not match the medical discourse. It is about being validated in your way of being, being recognised as belonging to the community, even based on self-diagnosis. This often provides a more nuanced picture of ADHD as people who are on a spectrum. (One of us)

In parallel to the diagnosis debate autism and ADHD are targeted in different welfare support systems. The Swedish Disability Act (SDA) concerning Support and Services for Persons with Certain Functional impairments (SFS, 1993:387), focuses on support to people with comprehensive disabilities. The SDA confers ten specified interventions, some of which are aimed specifically for people with intellectual disabilities. The act targeted three main groups (category 1–3). Category 1 includes persons with intellectual disabilities, autism or autism-like conditions. Category 3 includes people with severe physical or psychiatric disabilities. People with intellectual disabilities are entitled to education either in special schools focused on learning disabilities or in regular schools according to the special school’s curriculum, secondary school and special education for adults under the (SFS 2010: 800). People with psychiatric disabilities are not entitled to such institutional educational support systems, but regulations in the (SFS 1982: 763) 8a § and the Social Services Act 5:8 stress that local governments should work together to support this group. Most programmes for people with intellectual disabilities focus on placing people in specific programmes with activities to support their training. For people with psychiatric disabilities, the primary aim is to support the coordination of formal services in order to rehabilitate the person in the community, with the goal of eventually participating in the regular employment market. A solution regarding autistic people which sometimes also includes more severely impaired ADHDers, is a mix between support directed to either people with intellectual or psychiatric disabilities.

Results

(en)Countering ADHD narratives

One of the central themes in our collective autothnographic data is how we relate to different ADHD narratives, the names and naming of ADHDers, and what those might entail in both a personal and a professional, academic sense. Living with various diagnoses can, by Goffman’s Goffman (1963) words, be described as a form of stigma, albeit an invisible one. But similar to the participants in Bringewatt’s study (2011) we have experienced both aspects of stigma and empowerment associated with an ADHD diagnosis. In the following, we write about the feelings of fear, shame and hesitation with being associated with ADHD. Those feelings arise not essentially because of onés own experiences of ADHD or self-understandings as neurodivergent, but in relation to deficit, neuropathologizing approaches to ADHD. Among them are both ADHD as a neurodevelopmental deficit and ADHD as a social construct. But there are also other narratives present, illustrating ‘folk theory’ (Held 2020) formations of ADHD in our local Swedish contexts, what we have referred to as the superpower-narrative of ADHD.

Presenting ourselves to each other for the first time, gave rise to reflections on what it means to be named as an ADHDer by others. Presenting oneself this openly, partly among strangers, even within the promises of the space as secure and closed, we reflected upon the experience of ‘fixing’ and defining oneself at least temporarily as an ADHDer, as belonging to the group of ADHDers. For some of us, this was the first time outside of a close circle of close friends.

I think that maybe for some of us, it was natural to be involved and that maybe others needed to think another round. ADHD and other neuropsychiatric diagnoses are perhaps seen as a burden in the academy’s heterogeneous world and it is also about questions about what it can mean to “come out” as a researcher with ADHD. Here I think, for example, of what it means if a future employer "googles me". They would find a lot of meetings where I am open about, among other things, my mental illness, diagnoses, and experiences of sick leave. (One of us)

Openness, to come out as ‘a researcher with ADHD’, and the impact of being open (or searchable through Google) was something several of us have been reflecting on during the process of this work. Living with a neurodivergence can be a black on the foot in the academic world which among other things is characterized by conformity with certain expectations of neurotypicality and neuro-norms. Even those of us who do not experience any scepticism and challenges in our current workplace have no idea what prejudices and ideas about ADHD might surge in new employment. The deficit narrative was shadowing our storying of ourselves to each other. In relation to the deficit narrative, we navigated between on one hand highlighting our experiences of ADHD as impairment within the individual, our needs of expensive support and adaptations, our stress, and fear of unproductivity and possible sick leaves. On the other hand, we invoked counter-narratives of competence: stressing our productivity and ability to mask (c.f. Pearson and Rose 2021); positioning ourselves as ‘non-disabled’ ADHDers. These narratives can be understood in relation to both hierarchies of disabilities and contexts of support. Disability entails different types of combinations of functionality in which there also exist a hierarchy between and within different diagnoses. Intellectual disabilities are often associated with more stigma than physical impairments or neurocognitive disabilities. In the Swedish context (as well as elsewhere) it is impossible to get access to support without having a formal diagnosis and even though assessment processes to obtain support and service should be guided by a social model understanding, support is declined if medical certificates do not validate support needs. In this case, a diagnosis is required to get access to support. This leaves little if any choice or time for the individual to reflect upon or consider whether it would be helpful to have a diagnosis. In addition, professionals have the power/prerogative to decide what a diagnosis means to the individual which often reinforces a stigmatized identity or decides whether it should be a primary or secondary identity. In those circumstances, being provided with a diagnosis becomes a negative experience for the individual who is forced to accept the deficit narrative, in the form of the diagnosis, to even have a chance to receive support.

Our experiences of encountering ADHD are highly connected to experiences of multiple forms of capital in academia and in our circles of friends where sufficient cultural, economic, and symbolic capital could be used to escape the ADHD label and rather position oneself as a ‘critical to diagnoses’ in line with the narrative of ADHD as a social construct.

I have thought a lot about who the people critical to the concept of diagnoses are, that they often have a place, a position in which you can be who you are. Where you don’t have to bear the shame. Among my friends, often people who belong to some kind of cultural elite or are close to it. Folks who have different forms of capital that mean they can afford not to follow the norm. Either you can buy services (and who needs executive functions if you can buy all the groundwork or the family has so much cultural capital and then no bastard should come and define you. We, who do not have the capital, we need our diagnosis to get what we need. (One of us)

Among the ‘folk theory’ (Held 2020) formations of ADHD which we have encountered is what we refer to as the superpower-narrative of ADHD. From both narratives, ADHD is intersectionally understood at the crossroad of class, race, ability, gender and age. In Sweden ADHD as a ‘super power’ was popularized 2017 when the Swedish, white, young ‘super blogger and artist’, Viktor Frisk, published his autobiography Min superkraft!: så har jag lärt mig älska min struliga adhd (Eng: My super power!: that’s how I’ve learned to love my messy ADHD) (Frisk and Gahne, 2017). In its wake followed a whole wave of bloggers and podcasts that reinforced the image of ADHD as a superpower. While positively received by several ADHDers in Swedish social media, Riksförbundet Attention has stressed that ‘ADHD is far from a superpower for everyone’ (Riksförbundet Attention 2019). In relation to the superpower narrative, one of us recalls:

An acquaintance told me that "you don’t have autism, just a lot of ADHD". This person comes from a kind of popular cultural context, where ADHD has become synonymous with "efficient/productive". She said: "you wouldn’t have been able to do so many creative things if you didn’t have ADHD". It feels like this is a double-edged compliment. Yes, it is good to be productive – at the same time, it seems in academic, as well as in fine culture, circles that one can be "too" productive. Being given the hobby diagnosis of ADHD has thus become a way of saying that you are productive, but perhaps in the "wrong" way, to have too many balls in the air. What happened when my friend diagnosed me was a form of naming, perhaps a form of neoliberalizing and exhibiting. I felt like my existence became like a product, like I became a superhero with no control over the power. I became the bearer of a force that I at the same time had to look at from the outside. In this way, superhero coding becomes a way to make oneself or someone else into something of a freak show. What is the difference between the superhero and the savant, the autistic freak show? The superhero is meant to exist for others, meant to save others, save the day. What is taken from me to give to others? (One of us)

Similarly, one of us recalls from one of our Zoom meetings during the process of writing, where they brought up the notion of ADHD as the MacDonalds of neurodivergence in academia:

It seemed that several of you recognized yourself in ADHD as the MacDonalds of neurodivergence in academia, as opposed to the fine dining restaurants where eccentric crazy (male, white) autistic professors might (sometimes) pass. ADHD is also associated with the entertainment industry, as dirty culture and as spiffy celebrity guys can talk about as a superpower. An adult form of the rambunctious, white and hyperactive boy, and as far from a feminine or non-binary critical researcher identity as you can get. Class contempt, sexism and ableism in the ADHD narrative. I think that is what we need to dismantle and challenge in writing, somehow not reproduce it. (One of us)

Within the ‘superpower’-narrative, ADHD is stressed as a gift of creativity and productivity albeit a ‘messy’ one, associated with fast food speed. This narrative is contrasted with autistic academics, as metaphorically and literally associated with fine dining restaurants, careful academic knowledge production, and eccentric crazy male, white autistic professors. Critical perspectives on ADHD in line with ADHD as a social construct, which informs our local, Swedish academic contexts (such as Sociology or Education in Swedish academia), thus do not leave any room for an academic, agentic ADHD-selves.

Naming ourselves: transitioning from ‘broken NT scholars’ to neurodivergent scholars

In the following section, we will explore the possibilities of re-storying the ADHD academic self, which one of us has referred to in their autoethnographic writings as a transition from a ‘broken NT scholar’ into a ‘neurodivergent scholar’. This signifies the transition from understanding oneself as a (more or less consciously, and regardless of formal diagnosis or not) failed (neuroconventional) researcher; as lazy, sloppy, annoying, disordered and sole, into a position of empowered neurodivergent minority collective. This entails re-storying, renaming, unlearning and undoing harmed self-perceptions and destructive worldviews. It implicates shifting the gaze from the sole person with a ‘cluster of cognitive deficits’, to disordered (neuroconventional) structures of power and neurodivergent selves.

Experiences among neurodivergent people of minority stress (Botha and Frost 2020), and requirements of continuous masking of neurodivergent traits and passing as neurotypical (Pearson and Rose 2021) in order to navigate in neurotypical-dominated academic spaces can be understood as expressions of structural violence (Galtung 1969). Structural violence can be used to highlight and illustrate the role structural, systematic and organizational factors play in the actual setting for the violence (Galtung 1969), in our case the academic space. Structural violence can include institutional, organizational as well as material and symbolic means of social exclusion. One of us recalls the first meeting with such a twisted perspective:

Interpreting the world in that way was like an extension of the turmoil that the diagnosis had meant a few years before. It was as if all the tools I got from my education, all feminist theory, and all cultural analysis, could be applied to neurodivergence. And finally, I had a way to talk back to neurotypicality, study it and maybe someday help to dismantle it. Becoming part of a fully neurodivergent research context was like not having to do this overthrow of neurotypicality alone, but actually doing it together. This was a new form of neurodivergent identity creation, a new form of knowing. (One of us)

This acknowledgement or allowing for an ADHD unmasking is closely connected to ADHD coding, or acknowledging ADHD traits in each other, but also the ‘shakiness’ of ADHD agency and epistemic authority, defined by Oikkonen (2013, 284) as ‘the belief that the proposed account is the most accurate one’. In the following one of us recalls experiences of being ADHD ‘named’ (c.f. McGrath 2017) as an ADHDer by another one of us in contrast to non-ADHDer others (illustrated by friends and family, but of course also by clinicians in the formal diagnosis assessment, c.f. Yergeau 2018). Mindful that part of this citation introduces the whole paper, we want to reuse it here as an illustrative example of the impact of being named.

I remember when (one of us) suggested that I had ADHD. At first, I thought it was ridiculous, then I got scared and then my mind went blank. I did not have anything to relate to, everything I had heard about ADHD before was impossible to relate to. I started reading about women with autism and ADHD and realized that there is a collective knowledge gap. So, when I got my ADHD diagnosis, I met the same disbelief from friends and family that I experienced myself when (one of us) suggested that I may fit into the ND community (One of us).

During the process of writing, we have recurrently discussed experiences of ADHD naming, not only in the case of unmasking and being coded as an ADHDer, but also in terms of writing and writing processes. One of us reflects upon a writing process in the context of another research group, dominated by neurotypicals:

When there are too many “last minute” changes in a manuscript, or discussions about content, that I thought that we had agreed upon, it becomes difficult for me to cope. Particularly when I don’t have any margins to do the required rewriting. I can’t help it, but I feel betrayed. I wish I could let go and pretend like it doesn’t matter, that what matters is to get a publication…Then I feel that academia is not for people like me. Even when I know that it is not my fault, it’s easy to blame myself for not being better at time management, for not coping with stress, for having children with similar challenges and for being a single parent. Then I get angry and sad. I feel hopeless and in the worst place I tell my co-authors, exactly how I feel, even though I suspect that it will not result in being understood, that it might even make things worse (One of us).

Although these difficulties could be interpreted as ADHDers being unfit for academia, it exemplifies the need to acknowledge different types of learning and writing processes. In relation to neurotypical as well as other neurodivergent researchers’, we have found it to be valuable to clarify needs and propose alternative ways of working together during the process of writing. We have tried to be clear both in terms of expectations on research collaboration and also to acknowledge the impact of previous experiences of research and writing processes. Our writing processes and ways of writing affect what can be written, and how that can be read – i.e. it has a theoretical as well as an aesthetic aspect.

A friend of mine with ADHD said about a text I had written: This really fits my brain. That response is so different from what I often hear from colleagues; that my text is too dense, too associative, too fragmentary, not finished. It makes me think of the idea of the “finished” text as a neurotypical concept. (One of us)

This is interesting! Throughout my life, I have felt limited and hindered by the fact that everything must be ready, that it must be a finished product. And since ADHD often means difficulties in getting things done, when desire and motivation have decreased, it can often lead to a fear of starting projects. I would like to imagine a completely different view of the text, one in constant movement, dialogues etc. But of course, there is a risk with this, a downside. Snuttification, twittification, that everything that is written, is written in an ever-changing cyberspace. (One of us)

To conclude, transitioning from being a ‘broken NT scholar’ to that of a ‘neurodivergent scholar’ for us implicated a shift in narratives beyond that what we previously knew about ADHD as a phenomenon. It also entailed discovering our own, unique ways of writing, learning, socializing, researching and functioning in academia, and in relation to neurotypicality and other ways of being neurodivergent.

Concluding reflections

With this paper, we have wandered along the path newly set out by ADHDers within and outside of academia, of intersectional and ADHD-affirmative Critical ADHD Studies (Dieuwertje Huijg 2021). We have shared the need and the desire to move beyond deficit narratives of ADHD, and, without denying the realities of disability and impairments (c.f. Shakespeare 2008), in line with the neurodiversity paradigm, embrace ADHD as neurodivergence, as difference; as a valuable variation of human neurocognitive diversity; and as a neurominority position. We have started to explore its potential subjectivities of resistance, starting with the collective re-storying of our own narratives of ADHD. To recognize one’s own position/situation in one another’s, instead of being the ‘sole-ADHDer’, to paraphrase autistic theorist Sinclair’s notion of the ‘sole autist’ (2010), opens up the possibility of thinking collectively about ADHD.

Working together, albeit with a shared sense of ADHD, includes allowing different types of neuro-abilities and disabilities. It requires the redefinition of what is to be considered appropriate working methods. In that sense, it has become important for us to question what an appropriate research process could look like. How to allow for different neuro-abilities and difficulties, different ways of processing and writing? Our work stems from a combination of working from a bottom-up or top-down perspective. Some of us are more ‘bottom-up’, while others among us are more ‘top-down’. Somewhat jokingly, one of the more top-down of us wrote to one of the more bottom-up of us, after revising one of the texts within the project and sending it further: ‘the details just have to put on a good face and simply deductively fit together’, and the other one responded: ‘I’ll take over! The inductive/bottom up strikes back!’. Summarized (in a bit half-jokingly way), in this paper working from a bottom-up, have meant to be truly inductive. It has required the position of ‘not knowing’, ‘test thinking’ or leaving half-thought thoughts for your co-authors with the hope that others will take over and think further, to tolerate chaos and trust that the iterative process will guide you in writing up the research paper. Acknowledging and including both more bottom-up/inductive versus more top-down/deductive ways of thinking and working has been a process of exploring neurodivergent ways of co-working; as working with different forms of thinking, meeting and meeting each other somewhere on the way.

This working with different forms of thinking during the process has included working with different ways of time management or different attention spans. We have sought to combat double-empathy problems (Milton, 2012) or difficult translations stemming from different ways of functioning. Milton defines the Double Empathy Problem; as ‘a disjuncture in reciprocity between two differently disposed social actors which becomes more marked the wider the disjuncture in dispositional perceptions of the lifeworld – perceived as a breach in the “natural attitude” of what constitutes “social reality” for ‘non-autistic spectrum’ people and yet an everyday and often traumatic experience for “autistic people”.’ (Milton, 2012, 884). From this perspective communication between differently disposed social actors can be understood as cross-cultural communication, and more specifically in this context as cross-neurotype communication (Hillary, 2020), or what we will refer to here as neuromixed conversations. We acknowledge the challenges of working together as a group with different experiences of writing, different previous knowledge of concepts and previous research on ADHD, and different accessibility needs. But we also want to stress the importance of trust (or living with difficulties in trust) and forming safe research spaces, a sense of writing within a friendly community. Admitting the differences between us, even within a group of somewhat similar ways of functioning, where we do recognize ourselves in each other’s way of functioning, is an important step in transforming academia into dynamic learning hubs, spaces where exchanging experiences and building on strengths, acknowledging differences, and adjusting to difficulties, would enrich and create possibilities for vibrant research.

Within ADHD as a neurodevelopmental deficit or a social construction-narratives, the ADHDer is mainly, but not exclusively, objectified, othered from a neurotypical gaze. In this research, we want to contribute to a critical field of ADHD by acknowledging ADHD as clusters of cognitive difference rather than as clusters of cognitive deficits, but perhaps more central in light of the social model of disability; as a neurocognitive and neurofunctional minority within neuroconventional relational contexts (c.f. Thomas 2004), entangled with other social structures of power such as race, ethnicity, sexuality, age and gender (c.f. Garland Thomson 2005). We want to subjectify ADHDers as independent as well as collective agents, and ADHD as situated knowledge, an epistemological standpoint within research (c.f. Bertilsdotter Rosqvist et al. 2023).

Disclosure statement

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