Abstract
There has been a notable change in how third-level institutions perceive and interact with students who do not meet historically typical expectations regarding education. This is evidenced by an increased emphasis on equality, diversity, and inclusion in terms of access and retention across the sector. The extent to which this includes a neurodiversity focus varies significantly across jurisdictions. However, research suggests a gap between rhetoric and reality concerning neurodiversity at the third level, with many students’ lived experiences being reported as challenging, and at times compounding stigma, masking, and feelings of inadequacy. Moreover, it is unclear whether third-level institutions understand the nuance of neurodiversity and the significance of the neurodiversity movement. This project utilised the Global Café methodology to explore the above phenomenon from a participatory lived experience perspective. The project found that, despite the increase in focus by third-level institutions in the area of neurodiversity, this cohort is still disadvantaged when compared to their neurotypical peers and indeed may be experiencing greater exclusion as a result of the overemphasis upon what is perceived to be a singular and neurotypical understanding of the strength-based model within the third-level sector.
Lay abstract
This study looks at how colleges and universities treat students who learn differently. Even though colleges and universities talk a lot about being fair and inclusive, the research shows that many students who think and learn differently still face a lot of difficulties. This study explored this using a method called the Global Café. The Global Café method gathers information with students about their own experiences, allowing the students to direct the research. The findings reveal that, despite colleges and universities saying they support students who learn differently, many students still face challenges compared to those who learn in more traditional ways. The study highlighted that terms used in the area of neurodiversity were open to question/debate with different terms being preferred by different people in different contexts. It also found that many supports and initiatives are steeped in neurotypical (typical learning approaches) assumptions and therefore do not always apply to the needs of students who think and learn differently. Finally, the study found that more needs to be done to make sure students with different learning styles have the same opportunities in higher education, not just when they are entering it.
Introduction
Neurodiversity 1 has become a key area of interest in both academia and popular culture over the past decade. There is no settled definition related to the term, largely as a result of there being tension between the medical model, the strong social model, and the neurodiversity approach model (Dwyer, 2022; Green, 2023). The medical model is steeped in a deficit approach whereby neurodiversity is perceived to be innate or the result of environmental interactions that cause a deficit to exist within a neurodiverse individual and thus requires curing/fixing; the strong social model identifies neurodiversity as resulting from issues faced by neurodiverse individuals as a result of how society responds to anything that is not typical, therefore it is society that needs to be cured/fixed; and the neurodiversity approach/model attempts to straddle both in terms of understanding the many difficulties that neurodiverse people face being as a result of how individual difference interacts with the environment and therefore both the individual and the environment construct and reconstruct the world around them according to their lived experience (Dwyer, 2022). Under this model, no attempts to cure or fix the individual are sought nor is the individual a passive actor in terms of how society is constructed, but rather the individual is an active constructor of the world around them. This is further understood through arguments put forward that, just as there is diversity in all forms of life within the ecosystem, which is viewed as natural, it is expected that there are differences in human brain functionality, and instead of reflecting pathology or deficits, these differences merely reflect nature's natural tendency to diversity (Milton, 2019; Singer, 2016). Therefore, there is an increasing move towards going beyond the biological and social models alone and recognising the nuance in the real world and the complex interplay of a number of variables across a variety of individual lived experiences and recognising difference as a natural and indeed important aspect of life.
Whilst the term neurodiversity is typically used to describe various neuro-differences, such as autism, 2 attention deficit hyperactivity disorder (ADHD), 3 intellectual disability, developmental language disorder and dyslexia, among others, and the term neurodiverse 4 refers to persons experiencing these differences. These run parallel with the neurodiversity movement, an ideological position that challenges long-standing presuppositions about neurodiversity being a disorder, and what is valued in the world, and resists prejudices around difference. Thus, the term neurodiversity, neurodiverse and the neurodiversity movement will be used in this article to define neuro-differences, people who experience these differences, and the movement for change in this area, respectively.
The neurodiversity movement advances a paradigm shift in the understanding of neuro-differences, seeking to avoid the trappings of a purely biomedical view, as is often the case with mental health (Pellicano & den Houting, 2022) and the purely social view. Indeed, recent research in the area of autism highlights malleability in terms of the biological/social interaction, thus moving beyond more traditional understandings of autism, bringing our understanding more in line with mainstream individual difference developmental science, and thus more in line with the autism lived experience (Green, 2022). Yet, this is a complex space, and Green (2023) when referring to autism, argues that there is room and indeed a requirement for the clinical, the scientific, and expert by-experience communities to enter into shared understandings around co-existing realities. This approach may equally be applied to neurodiversity and the neurodiversity movement. These types of arguments highlight the many complex and sometimes competing ideas currently within this space.
The above-discussed shifts in thought, related to neuro-difference, have resulted in the promotion of inclusiveness and understanding of people's states of being (Dyck & Russell, 2020) and the development of a strength-based perspective rather than a deficit-based perspective (Armstrong, 2012; Austin & Pisano, 2017; Silberman, 2017). However, the strength-based model may not be applicable to all, particularly those experiencing complex disadvantages in their lives (Quigley & Gavin, 2018) or struggling to adapt to a neurotypical institution such as a third-level institution. This potentially highlights a lack of theoretical underpinning to the strength-based model, where epistemic power and cognitive privilege, contributing to deeper social presuppositions, are not being unpicked and challenged (Legault et al., 2021).
Many people who see themselves as represented within the neurodiversity umbrella report that fitting within the disability framework is often the only means of securing societal needs/adaptations. Yet, because neurodiversity is typically a hidden difference (Ripamonti, 2016), it is often missed, overlooked and/or downplayed (Quigley & Gavin, 2018). When not overlooked or downplayed, questions remain about where neurodiversity fits and whether it fits neatly within the disability framework (Dwyer, 2022). As outlined below, the findings of this study argue that we must move beyond the deficit model and move towards an affirmative approach based on valuing ‘different abilities’. Whilst this is not a settled area Dwyer (2022) has suggested that the optimal place for neurodiversity is somewhere between the medical and the social whereby both come into better conversation with each other. The unsettled nature of this area is compounded by society being largely constructed in a manner that meets the norms of the neurotypical majority, leaving those whose neuro presentation differs from the ‘norm’ outside of these parameters and often experiencing disadvantage in their lives (Legault et al., 2021; Milton, 2019; Quigley & Gavin, 2018) and this is where similarities to the disability movement are evident. Legault et al. (2021) discuss the above-outlined phenomenon in terms of epistemic power and cognitive privilege leading to discrimination and disadvantage. In other words, deviation from what society perceives to be cognitively, behaviourally and physically typical, leads to discrimination and disadvantage. Such an approach provides us with a more in-depth and thoughtful way of thinking about the neurodiversity movement and its challenging of the presuppositions around neurodiversity and the lived experience. Neurodiversity and the neurodiversity movement is a complex space with an interplay between multiple and sometimes competing frameworks. Indeed, there is a growing literature surrounding where neurodiversity sits in terms of the above-outlined frameworks (Dwyer, 2022). Furthermore, there are deep epistemic presuppositions that have been largely unchallenged to date, going beyond the biological-social debate. These require interrogation, challenging and rethinking, particularly in the real world of intersectionality. With these difficulties arising in the natural and social sciences, it is not surprising that state agencies have been slow to respond appropriately and effectively. The education system is a prime example of where complex intersectionality occurs and the above-outlined frameworks interact. This has left a whole cohort of individuals, already experiencing difficulties in their lives, at a significant disadvantage compared to their neurotypical peers.
There has been a notable change in how third-level institutions perceive and interact with students who do not meet historically typical expectations regarding education (Wolbring & Lillywhite, 2021). This is evidenced by an increased emphasis on equality, diversity and inclusion in terms of access and retention across the sector, being framed by the United Nations Convention on the Rights of Persons with Disabilities (Buckley & Quinlivan, 2023), and the Athena SWAN charter (Wolbring & Lillywhite, 2021). Indeed, a quick Google search highlights that most third-level institutions across Anglophone countries have numerous committees at the department/school level, faculty level, and campus level whose role is to ensure equality, diversity, and inclusion across all areas of college life. Approaches to widening participation for under-represented students in higher education can take different forms. In the past decade, the Irish higher education sector has undertaken efforts to adapt to a more diverse student population, making strides towards inclusive learning environments and increased educational opportunities for historically under-represented groups. Strategies for widening participation for under-represented groups in Irish higher education include quantitative targets, targeted supports such as specialised entry routes, designated student advisors, academic, financial, and learning supports, and improvements to the built and learning environments to be more inclusive (Byrne et al., 2014). These strategies are aligned with national policy (HEA, 2004, 2008, 2015, 2022) and a system performance framework that monitors higher education institutions’ performance and provides a positive funding mechanism in relation to national priorities, one of which is access and participation (HEA, 2018). This is also evident in other jurisdictions such as the United Kingdom, Australia, New Zealand, and some parts of the European Union and the United States; however, other jurisdictions have been slower to develop policies and practices that advance equality, diversity, and inclusion policy and practice in the area of neurodiversity. For example, Cheng et al. (2023) highlight the cultural barriers to advancing more positive rhetoric in the area of autism. They explore three jurisdictions, Ethiopia, India and Hong Kong, to show how the paradigm shift, as discussed above, is not as evident and is challenged in terms of advancement due to cultural barriers. Further, even where positive rhetoric is evident it must be scrutinised in terms of its motivational framework. For example, Nachman and Brown (2020) discuss the concept of perpetuating traditional hegemonic principles through a lack of challenging long-standing presuppositions in an area, such as ableism is normal and disability is outside of the norm. Questioning this presupposition allows us to look beyond and adapt our taken-for-granted ideas about the area. This feeds into questions around; the motivations of third-level institutions’ policies and practices aimed at supporting neurodiverse students, is it based on challenging long-standing exclusionary ideas, or is it as a result of charitable ideas around including the ‘other’? It is beyond this article to drill down into the underpinning motivations where rhetoric is ‘positive’, to identify the motivational framework beneath, it suffices to say that readers should be aware of this issue and should not assume that all rhetoric in this area is aligned with challenging exclusionary norms but may indeed be framed around charitable ideas about helping those who are in need. The latter, it is argued, brings us back to a place of exclusion, albeit a different type, and does not bring us to a place of changing the lens through which we perceive difference. Even where rhetoric is ‘positive’ in whatever guise that may be, research suggests a gap between rhetoric and reality concerning neurodiversity at third-level, with many students’ lived experiences being reported as challenging (Masika & Jones, 2016). For example, a recent study in the United States highlighted that despite advances in this area, students with autism were experiencing anxiety, stigma, bullying and poor performance due to a lack of appropriate responses to their requirements within the education system (Evans et al., 2023). Moreover, many reports feeling excluded and alienated from the education experience despite an increase in services and supports from the third-level sector (Clouder et al., 2020).
It is important that this be explored further, as evidence suggests that success in third-level education goes beyond engagement with academic activities and requires a sense of investment or belonging to the institution as a means to support self-advancement both intellectually and through broader means of self-actualization (Wenger, 2000). Indeed, the importance of communities of practice, a type of informal and legitimate peripheral participation that is supported by high connectivity, has been shown to be an important part of the learning process (Hoadley, 2012). Therefore, third-level education impacts a person's life beyond academic achievement; it is key to self-fulfillment, self-development and exploring intellectual curiosity in a safe and supportive environment. Without the latter, third-level institutions fail to develop blue-sky thinking and move into a space of rote learning and closed thinking. Thus, it is argued that we must consider education as something more than learning from a book and sitting exams, but rather a process of engagement with the world that leads to the development of ideas and the challenging of presuppositions. Wenger (2000) outlines that we intellectually develop through belonging. For example, Wenger highlights the importance of engagement, the process of engaging with the world and others in it, this being key to how we self-develop and understand our lived experience; imagination, as a process of interacting with the social world and interpreting our place within it through reflection and possibility exploration; and alignment, as a process of aligning our local activities with broader world knowledge as a means to advance knowledge by either arguing in support or indeed challenging the state-of-the-art. This suggests that engagement with knowledge generation, whether through didactic educational engagement or indeed such actions as scientific experimentation, is more than simply that; it is also accompanied by broader social interactions, often at the periphery of formal educational structures, and this helps shape the former and advance shared knowledge.
This theory has been critiqued by some for underplaying problems around tensions and conflicts resulting from this type of shared learning (Handley et al., 2006). However, others argue that this forms part of the learning process (Masika & Jones, 2016) and indeed one might argue, is a most important aspect of such learning, as divergent ideas can often lead to challenges of ideas and thus further reflection and rethinking. A further potential problem is that many of the peripheral learning groups tend to be made up of people with shared ideas, problems and passions. This raises a further issue of echo chambers and the exclusion of persons with different ideas or social ways of being. This is particularly important when referring to neurodiverse students, as this type of social engagement can be challenging both within and beyond an educational setting (Zolyomi et al., 2018), and the informal nature of many aspects of community of practice type approaches can be exclusionary and alienating. Therefore, a recognition of this lived experience is imperative if neurodiverse students are to access intellectual development in line with their peers.
Research suggests that there can often be a lacuna between theoretical frameworks, aspirational policy, and real-world practice and how this impacts the neurodiverse community in a time when inclusion is a buzzword must be carefully considered and explored. This is imperative not least because, in recent times, the value of people who see themselves as represented within the neurodiversity umbrella, in terms of their contribution, sometimes bringing different perspectives as a result of perhaps different life experiences resulting in different forms of problem-solving, or indeed as a result of thinking differently, has been recognised, and attempts at developing a supportive environment within the education sector have been growing. And yet, the findings from many research studies report a gap between theory, policy and practice (Masika & Jones, 2016), a dearth of evidence-based supports (Green, 2023), and a divide between those who perceive themselves through the strength-based/affirmative lens or the disability lens (Griffin & Pollak, 2009).
Methodology
This study was designed to support the ‘nothing about us without us’ concept. The project adopted a co-designed participatory approach whereby the concept of the study itself was developed in a participatory way in line with the neurodiversity movement principles. The project adopted the neuromixed academic pathway put forward by Bertilsdotter Rosqvist et al. (2023) meaning its framework stemmed from a cross-neurotype collaboration ethos aimed at facilitating the development of cross-community integration (Bertilsdotter Rosqvist et al., 2023.
This project utilised the Global Café method of data collection. The Global Café method is a participatory approach that allows participants to shape and develop the project, limiting researcher bias and prescription. This method facilitates data collection that is meaningful to stakeholders. It operates by providing a safe space where a larger group is broken into smaller groups that work on a topic/idea. The smaller groups’ findings are then brought back to the larger group, allowing for further critical engagement with the topics/ideas. This facilitates discussion and shared knowledge generation, removing the researcher-led approach while promoting a stakeholder-led approach. In line with this ethos, unlike interviews and focus groups, there were no questions asked; instead, themes were presented and those participating were asked to discuss the themes with reference to their lived experience of being a third-level student. The Global Café allows for this discussion to occur in a power relation-free small group environment. This allows participants to critically discuss themes rather than answer prescriptive questions.
The study was conducted in one Irish third-level institution and therefore caution should be exercised in terms of generalisation of the data and further research in this area is required. Participants were recruited through an open invite to all those registered with the university as neurodiverse. The University Access Office circulated the project invite and those interested contacted the study principal investigator (PI) for further information.
In line with the participatory nature of this project, the traditionally used term ‘participant’ has been replaced with ‘collaborator’ as those who contributed to the project did not participate in a predetermined framework but rather co-created the framework and interpreted and collaboratively reinterpreted the framework.
There was a large research team (N = 8) who worked on the project outside of the Global Café phase. This team consisted of several neurodiverse individuals (N = 7), including both academic staff and students. During the Global Café phase collaborators (N = 11) joined the research team to conduct the Global Café's. This cohort only worked on the Global Café phase of the project and consisted of neurodivergent persons only.
The literature review phase of the project allowed for the collation of terminology and the development of themes (see Table 1) to bring to the Global Café. However, those attending the Global Café were free to raise themes that they felt were important to discuss also. All those working on the research project underwent a 2-hour training session on what the Global Café method is, how to implement it, and their specific roles.
Themes generated from the literature review.
Recruitment
The sample was recruited through the University's Access Office. This Office provides support to students identified in the National Access Plan for Equity of Access to Higher Education 2022–2028. This includes persons who would typically be under-represented within the higher education space. The Office circulated information about the project to those registered with the University support office in relation to autism, ADHD, dyspraxia, dysgraphia, dyslexia and dyscalculia. Any students interested in the project then contacted the PI directly for more information on the project. Nineteen students contacted the PI in relation to the project and 11 expressed an interest in collaborating. Ten students collaborated on the first session and six collaborated on the second. Session two consisted of five collaborators from session one and one collaborator who could not attend session one but could attend session two. Outputs should be read in line with the small sample size.
Sessions
Two Global Cafés were held. Session one ran for just under 2.5 hours with 10 collaborators in attendance, and session two ran for 2 hours with six collaborators in attendance. The first session aimed to collect data, while the second session was for discussing the data after analysis to allow for validation and any additions/amendments/clarifications.
During the first session, collaborators were divided into groups of 3/4 with a facilitator who took notes. Each group was provided with an A3 page for each theme, and each participant was given a small notepad. The A3 page captured the group discussion, and the small notepad provided a space where individual contributions could be recorded. The session was not audio recorded. Each theme was given a 10 to 15 minute small group discussion, and then the large group came together to discuss the small group findings. This process was repeated until all five themes were discussed. There was then a 10 to 15 minute session on any theme that the collaborators felt was important to discuss. Subsequently, all the A3 and individual notes were collected and placed in thematic envelopes for analysis.
Demographic information of the collaborators was not collected as intersectionality was not being explored within this study and the collaborative dynamics of the method being used was not conducive to asking collaborators to complete a survey. Moreover, the small sample size may have resulted in identifying the collaborators through the data collected. Further research in terms of intersectionality and variation in the lived experience, as a result, would add to the findings from this project. Pronouns of participants suggest variation in terms of gender identity among collaborators, however, this information was not empirically collected. Discussions outlined that collaborators were a mix of autism, ADHD, dyspraxia and dyslexia; however, as outlined above this data was not formally collected and it was not clear whether there was co-occurring neurodiversity. All those who participated were third-level students. A data request to the third-level institution showed that at the time of the study (2022–2023) there were 520 undergraduate and 55 postgraduate students registered as neurodiverse at the study site – 144: autism, 79: ADHD 5 /attention deficit disorder, 52: dyspraxia/dysgraphia, and 300: dyslexia/dyscalculia (Tables 2 and 3).
Frequency of neurodiverse students enrolled with the support office during the academic year of 2022–2023 by gender.a
aAny frequencies below 10 are not reported to mitigate any risk of identifying the collaborators.
ADD: attention deficit disorder; ADHD: attention deficit hyperactivity disorder; N/U: non-binary (N) and undisclosed (U).
Frequency of neurodiverse students according to age.
Age calculated on 1 June 2023; 18 to 22 represents non-mature students and 23 and older represent mature students in Ireland.
ADD: attention deficit disorder; ADHD: attention deficit hyperactivity disorder.
It is accepted that the list above may be more aligned with a biomedical categorisation of neurodiversity and fails to capture the nuance of real life and the paradigm shift in terms of the neurodiversity movement. However, the data from the collaborators expanded beyond this simplistic and one-dimensional categorisation and labelling and identified the complex and rich essence of being neurodivergent.
Data analysis
The data from the notes were entered as written into Excel, using the original topics as guiding themes. They were then coded into sub-themes and reviewed. Braun and Clarke (2006) outline a six-step approach to thematic analysis of qualitative data. This approach was followed to allow for robust outputs. Theoretical rather than inductive coding was utilised as core topics (as outlined above) had been identified through the literature review as a means to guide the Global Café discussions. Other than the core topics, open coding was utilised as this allowed for a more grounded theory approach to code generation. Members of the team coded the data individually prior to coming together as a group to identify similarities/differences across codes. The codes were then thematically organised into sub-themes and grouped according to the six core topics discussed at the first Global Café. Once the codes and sub-themes were validated within the research team they were brought back to the collaborators for discussion and validation at the second Global Café session. At this point, codes were thematically collapsed which resulted in five core themes (themes 1–5 in Table 4). During write-up themes 4 and 5 were combined due to the repetition of data. Any clarification/changes were made in line with collaborators’ requests. This method was carefully considered by the research team and designed to ensure that the data remained within the control of the collaborators, accurately reflecting their lived experience.
Literature review themes and sub-themes (themes 1–5) and theme and sub-themes (theme 6) generated through self-directed discussion during the Global Café.
Findings and discussion
Key findings
Several key findings emerged from this study. Firstly, terminology in the area remains contentious and variation in usage was linked to context. Stigma and discrimination remained a concern particularly when dealing with state agencies such as the University and its staff. Moreover, how terminology and language are presented, particularly in terms of being exclusionary and couched as a deficit was outlined as contrary to an affirmative approach. Secondly, the value of the strength-based model was questioned, whereby the strengths that are valued were deemed to be based on neurotypical perceptions of what a strength is and what is valued within a neurotypical dominant society. This was identified as highly problematic as it compounded feelings of inadequacy. Thirdly, the University support, outside of specifically designed student support services, was inadequate and was perceived to be operating under neurotypical ideas of how to provide support and facilitate full participation. There was a significant lack of knowledge and understanding amongst the University staff in terms of what and how to facilitate the full participation of neurodiverse students and what was available was steeped in neurotypical assumptions. This lack of knowledge and understanding left students at a significant disadvantage to their peers due to the large amount of time being dedicated to self-facilitation. Fourthly, a neurodiverse affirmative approach to facilitating transitioning to employment was lacking and dominated by neurotypical approaches and assumptions. These findings will be discussed in detail below.
Discussion
Terminology
Findings suggest that terminology is subjective, with some reporting it as very important and others reporting it as not so important, but rather the intention behind the message being more important. However, all agreed that terminology can lead to difficulties on several fronts. For example, those collaborating on the project recognised that terminology allows for access to services and can provide a quick definition of the difficulties that can be faced in life. Yet, it was also reported as being exclusionary and discriminatory. Therefore, collaborators struggled to come to any definitive conclusion about terminology, thus identifying the complexity of the area. The best conclusion that could be reached on terminology was that terms are subjective and can be advantageous in some areas of life, such as accessing services/accommodations at the third level; but disadvantageous in other areas, such as one-to-one interactions with uninformed persons such as lecturers who can perceive neurodiversity as an excuse for laziness or not meeting expectations in terms of engagement with typical teaching methods.
This dichotomy of lived experience related to navigating the use of terminology was described as being very stressful and requiring constant interpretation and reinterpretation of the situation the student finds themselves in and having to make internalised decisions on how best their message will be received and thus adapting their presentation to meet those they are communicating with. For example, many collaborators discussed using different terms for the same neurodiverse presentation in different situations – different for family, friends, colleagues, employers, etc. In other words, the collaborators discussed adapting how they describe their presentation and how they communicate depending on the audience they find themselves engaging with. This was described as a highly stressful process that had the potential to lead to a positive (inclusive) response or a negative (exclusionary) response from their audience.
Terminology was also discussed in terms of variation related to whether it is perceived as subjectively discriminating or empowering. All collaborators favoured the term neurodiverse over neurominority and neurodivergent. The term neurominority was discussed as having a sense of sameness amongst the neurodiverse community, which collaborators reported as not being their lived experience. All collaborators reported vast variation within the neurodiverse community and thus (neuro) diverse rather than (neuro) minority captured this more effectively. Collaborators also report neurominority as having a more exclusionary perception as it distinguishes the (neuro) minority from the (neuro) majority and therefore does not capture the diverse nature of being human, with some being more diverse than others but not distinct. Neurodivergent was also discussed and collaborators reported it as also being exclusionary as a result of perceiving people as diverging from a norm, normal being perceived as a fallacy by the collaborators.
Neurodiversity was referred to as being useful in terms of being an umbrella term that can be used without having to go into the exact nature of the diversity, which can be fluid, thus developing and/or having a complex overlap of presentations that can be difficult to explain. For example, the collaborators discussed being able to use the term neurodiversity to outline their need for a different type of pedagogical approach rather than having to discuss attention deficit hyperactivity disorder, dyslexia and autism, having to explain what each is and how they are impacting their studies. The term neurodiversity was reported as very useful in terms of avoiding repeated discussions around the lived experience complexities often faced. Collaborators discussed how using terms such as ‘normal’ or ‘regular’ has an undermining impact on students who see themselves as represented within the neurodiversity umbrella, and entrenches the deficit model both structurally and individually. Similarly, most collaborators (N = 9) preferred the term different-ability to disability as a result of the latter being more aligned with a deficit and negative life contribution, which they felt was contrary to and did not capture their life contribution. The other collaborators (N = 2) thought disability was useful as it assisted with accessing accommodations within the third-level environment but was not as useful outside of this environment as it contrasted them to able-bodied persons. They also stated that disability should not be perceived as a negative but rather as a difference in ability that can complement others, with other abilities.
Having a blunt distinction between neurodiverse and neurotypical was discussed as problematic also as it implies, respectively, ‘different’ and ‘normal’. This blunt understanding of people and their differences fails to take into consideration the nuances and variation in presentation. Collaborators discussed the privileged position they inhabited, being third-level neurodiverse students. They recognised that this was a result of being able to challenge the difficulties that they faced in life as children as a result of having both financial and/or other resources they could draw upon to allow them to progress. They recognised that many neurodiverse individuals do not have such a lived experience and thus do not have the opportunities that they have accessed. In this discussion, they identified that variation within and between neurodiverse and neurotypical (for want of a better description) as complex and nuanced, the use of two contrasting terms does not capture this.
Further to this, the collaborators also discussed that thinking differently is what is important to consider rather than valuing one way of thinking over another. While in recent times there has been a move towards recognising and valuing different ways of thinking, the collaborators’ experience was that this was more aspirational and theoretical rather than a grassroots reality. Terminology can feed into this by distinguishing between those who are ‘normal’ and meet societal expectations and thus are valued; and those who are ‘abnormal’ and do not meet societal expectations and thus are not valued, and indeed are at times seen as a burden, particularly when seeking adaptations within education to allow for equity of access and outcome.
The strength-based model
Collaborators recognised the now ubiquitous nature of the strength-based model of neurodiversity in terms of rhetoric but reported that their lived experiences did not correspond. Thus, they reported a gap between societal and institutional recognition of neurodiversity and its strengths, and their daily lived experience, for which the strength-based model was not readily experienced. Indeed, collaborators reported that this gap put further pressure on students as they wondered why they were not ‘strength-based’, leading to further feelings of exclusion and failure. Many collaborators agreed that they did not feel like they fitted into the strength-based model, despite being third-level students, and reported that this feeling of exclusion must be compounded for those who do not make it to third level. This led back to a discussion on what is valued within society, and it was reported that the strength-based model, despite having the motivation to value difference, is selective in the difference that it values, the values being more aligned with neurotypical values. Therefore, caution is required in terms of running with this model without understanding the potential pitfalls that could be contained within. This discussion aligns with the work of Legault et al. (2021) referred to above, whereby epistemic power and cognitive privilege lead to discrimination and disadvantage even in situations where the opposite is being sought.
There was also discussion and concern about the strength-based model not capturing intersectionality sufficiently. For example, social class was discussed as a barrier to achieving what is valued within society, and when social class intersects with being neurodiverse, the collaborators discussed this as potentially problematic in terms of fitting within the neurodiverse strength-based model. There was a feeling that the strength-based model was aligned with success, and success was strongly associated with societal norms around certain life expectations; for example, education, employment, family, and economic prosperity. Thus, those who do not fit within this model do not fit within the strength-based model. There was a recognition, therefore, from the collaborators, that they were privileged and could fit within the strength-based model to a certain degree and that those who were not as educationally and opportunity-rich would be excluded. They, therefore, questioned the value of the strength-based model as it currently stands.
Collaborators described that an overly positive narrative on neurodiversity made them feel inferior and that they were not good at being neurodiverse. Moreover, they felt that an overly positive space negated the struggles they had and still face in their daily lives. They discussed dealing with this by masking more as a means to develop strength-based coping skills. Therefore, not only did they describe masking to hide their neurodiversity, but they also described masking as a means to cope with feelings around not meeting the requirements of the strength-based model. This is highly problematic as it was discussed as placing additional stress on the collaborators and is counter to the motivations behind the strength-based model.
The collaborators discussed the requirement for a more nuanced understanding of success and strengths, and importantly, a more nuanced and flexible trajectory to achieve this. They gave the example of seeing this area as not simply strengths but rather opportunities for collaboration between people who think differently and bring different ideas to the table. This is reminiscent of Habermas's Communicative Rationality, a means of understanding collaboration for all rather than the hegemony of a few. This new approach to communication requires power and supposition-free interactions where true learning from voices outside of the typical social norm framework is recognised, valued and considered. Whilst this may be seen as a prescriptive ideal in terms of how to progress in this area and therefore may be viewed as contrary to the collaborative ethos and fall foul of neurotypical hegemony as a result of unchallenged values as discussed above, it can also be perceived as a collaborative ideal that commences a process to reach a shared space where communication finds its own pathway rather than a prescribed one, and any prescriptive element is diluted by a process of consensus building. The collaborators discussed several skills they believed they could bring to the table but were not always provided with the appropriate pathway to do so—strong work ethic, open-mindedness, focus on one area, leadership, thinking outside the box, attention to detail, awareness of others, being literal, abstract thinking, and often tolerance of others due to life experience. They believed that these were strengths but were not always recognised as such, as some may not be valued in the economic world. They reported disliking the neurodiverse narrative about ‘super-strengths’ and felt like the presuppositions around what ‘strength’ is should be challenged. Better communication opportunities and concensus building around these messages was recommended.
Lived experience of teaching and engaging with third-level institutions
The collaborators felt that there was a dearth of information among lecturers regarding neurodiverse students. They believed that if universities were accepting neurodiverse students, there was a need to ensure that those within the institution were properly informed to interact with and understand these students. The collaborators reported feeling judged when unable to meet certain expectations of the lecturers. Some lecturers were dismissive of their difficulties, with incorrect assumptions being made. For instance, there was a perception that students were being lazy when facing challenges or unable to make eye contact in the ‘typical’ manner and thus rude.
The collaborators also faced difficulties repeatedly discussing their differences with multiple lecturers and other university staff, and having to provide numerous medical certificates for accommodations. They felt they were viewed with suspicion as if they were trying to avoid work when seeking accommodations or encountering difficulties with certain tasks. The collaborators reported an underlying assumption that students were attempting to evade responsibilities, causing significant stress. Some collaborators even hesitated to seek accommodations at times due to the fear of being perceived negatively.
All collaborators reported the support network within the third level as overwhelming, fractured and difficult to navigate. While most collaborators reported genuine efforts among most third-level staff in terms of providing support, the lived experience was a feeling of being overwhelmed due to the vast array of people and online services that they were directed to. There was a lack of central knowledge and a passing from one person to another before getting the information needed, along with a lack of flexibility within the services, which meant greater difficulty in actually accessing what was needed. All collaborators recommended a central hub where a person who is an expert in neurodiversity and the neurodiversity movement could guide students in terms of their individual needs. They suggested that having this centralised expertise would significantly reduce stress and anxiety in terms of navigating the system, which they reported as taking a significant amount of time and thus taking time away from their studies and college life experience.
Furthermore, they reported that the time given to trying to navigate the services meant they were at a disadvantage compared to their neurotypical peers who did not have this burden. As a result of this prolonged and protracted navigation of services, which often did not exactly meet their needs due to inflexibility, the collaborators reported often becoming psychologically distressed, resulting in a crisis. This crisis impacted their academic performance and engagement with college life. Moreover, it was reported that crisis intervention was insufficient to deal with their needs. Increased access to psychological services and more frequent outreach services were suggestions put forward to reduce reaching a crisis point. Again, the collaborators reported having a neurodiverse expert within the support services who has the expertise to avert the crisis before it happens or to successfully support a student through any crisis as an important step to be considered. There were concerns around a gap between third-level institutions providing access to neurodiverse students, which is admirable, but a lack of adequate supports to allow those who have been given access, an opportunity to experience college life as a neurotypical student does.
Concerns around diagnosis privilege were raised. This is where those who can afford private diagnosis are privileged over those who cannot. Many collaborators discussed the long and expensive pathway to diagnosis. Mature students discussed this as being particularly problematic in terms of not being achieved until adulthood and thus limiting their engagement with education earlier in their lives. There were concerns around those who had suspected differences but could not afford a diagnosis. While it was accepted that it was not the role of the third-level institution to provide diagnostic services, there were suggestions around using screening tools to assist students who were awaiting diagnosis as a means to provide supports quickly and therefore allowing the student to engage more fully with their studies.
Third-level accommodations were another topic of debate. The collaborators described accommodations as being a blunt instrument to deal with varied and complex presentations of needs. For example, they discussed talking among each other during exam time and finding out that despite the variation in their presentations, most students were simply given an additional amount of time to complete their exams, and they felt that this did not always accommodate the variation in their needs. This approach fails to consider and provide for the complexity of a student's needs and provides an unequal playing field for those who receive accommodations. The collaborators identified that it would be a difficult process to adjust accommodations to a person's needs, as it would require significant individualised approaches and thus increased resources; however, striving for better practice was recommended.
Finally, having quiet, low-stimulus environments are very important to providing equity of opportunity and outcomes for neurodiverse students. Neurodiverse students must be able to use the third-level institution campus to study and advance their intellectual skills in line with their neurotypical peers. The collaborators discussed a third-level institution as having an obligation to provide such spaces if they are providing access to neurodiverse students.
Transitioning from third-level education to the workforce
The collaborators expressed significant concerns about transitioning from education to employment. Many reported having gaps in the curriculum vitae as a result of their direct experience of societal disablement relating to neurodiversity. Disclosure was a further area of concern with diverging opinions about whether there is a disclosure requirement to potential employers. Sources of potential confusion and stress were identified across a range of oftentimes standard employment requirements and functions including, difficulties advocating for themselves, drafting appropriate and professional emails, and interacting with other employees. In response to these challenges, the collaborators made several recommendations to pre-empt potential sources of stress when transitioning to the workforce, including work placements to assist with understanding a typical workday thus assisting with reducing stress and developing appropriate expectations; workshops covering note-taking, stress management, healthy habits upon entering the workforce, interview skills, and importantly, how to handle rejection, were also suggested to assist students during this phase of their life trajectory. Collaborators also emphasised the importance of providing information on neurodiverse-friendly employers and offering mentoring from neurodiverse alumni. One key recommendation was to establish neurodiversity officers within career guidance offices. These officers should be tasked with providing the necessary support for neurodiverse students to facilitate a successful transition from third-level education to employment. As was outlined above any expert should have a strong knowledgebase in the neurodiversity movement as well as more traditional understandings of neurodiversity or this area is likely to stagnate.
Conclusion
This study was a small study at one university in one jurisdiction. However, it highlighted some important considerations for third-level institutions going forward (see recommendations below). In line with previous research, findings suggest that, despite increased efforts and resource allocation to access offices, the lived experience of neurodiverse students has many challenges that prevent them from reaching their full academic potential, in line with their neurotypical peers. As such, further advances are required to ensure that neurodiverse students have equity of opportunity once in the higher education system, and not just when accepted into it. Third-level institutions must move beyond neurotypical approaches to and assumptions about access, retention, and completion support and facilitation concerning neurodiverse students if true inclusion is to be achieved. Adopting a collaborative approach and the nothing about us without us ethos in terms of developing policy and practice in third-level institutions would advance this area considerably.
Recommendations and next steps
Several key recommendations were made by the study collaborators, and it is suggested that access offices consider these when advancing policy and practice in the area of neurodiverse student inclusion at third-level.
Firstly, terminology is subjective, but care should be taken to ensure that it is not exclusionary. The term “neurodiversity” is a useful umbrella term to reduce long descriptive discussions about different presentations. However, it can cause stress as different terms are used for different audiences, and the student is unaware of the type of response, positive or negative, that they may receive.
Secondly, in terms of the strength-based model, a gap between the theory and the lived experience was discussed, whereby the collaborators in this study reported feeling excluded from the strength-based model. The model was discussed in terms of having a narrow definition of success, leading to exclusion and discrimination. The collaborators discussed this leading to them doubly masking, whereby they masked to hide the neurodiversity and then masked again to present as a ‘good neurodiverse’ person who fits within the strength-based model, when in fact feeling excluded. Caution is required when adopting this approach to ensure that it is not underpinned by neurotypical assumptions around strengths. An affirmative model that reflects on and rectifies these problems may be preferable.
Thirdly, in relation to teaching and institutional support, it was recommended that there be greater awareness among third-level staff, both academic and beyond. This would reduce misunderstandings and incorrect labelling of neurodiverse students, which was reported as causing great distress and sometimes limiting the seeking of support when needed. It was also recommended that one point of contact be provided to limit the time-consuming process of multiple contacts, this detracting from study time this leaving the student at a disadvantage to their neurotypical peers.
Fourthly, accommodations for students were also raised as a key concern. The threshold related to accessing accommodations and problems around securing a diagnosis in the first place, as a result of the huge backlog in health services, was highlighted as a core problem in terms of meaningful engagement and retention in third-level education. As numbers increase, universities need to explore new ways of accommodating students without the necessity of diagnosis. This is particularly important if third-level institutions are to avoid diagnostic privilege which tends to favour those with more resources and thus have access to private healthcare. Further research is required to establish good data on the various accommodations that are helpful to different student needs. Currently, the extant data is weak in quality and vague in its interpretation as applied to individual students. There is a clear need for ‘bespoke’ accommodations that reflect an individualised understanding of a student's needs. This approach is currently limited by the lack of good-quality data to inform practice. It is recommended that third-level institutions reduce their reliance on formal diagnoses for supporting neurodiverse students. Acknowledging strides in this direction, national funding has been allocated to Irish third-level institutions to strengthen Universal Design for Learning initiatives (HEA, 2022). Key practices involve integrating flexible assessments, varied learning resources and fostering a supportive learning environment. While concepts such as Universal Design cater in general terms for additional needs they do not sufficiently address very real individual needs. The gap between perceived need and accommodations provided is a source of frustration to students and in some cases leads to disillusionment with the entire process of linking with support services.
Fifthly, having additional low-stimuli study environments within universities was suggested. It was accepted that there were some moves in this space, and many universities provided such spaces. However, it was felt that there was an increase in neurodiverse students being accepted into universities, and therefore there was an onus on universities to provide more spaces to accommodate the higher numbers.
Finally, those collaborating on this project recommend a specialist career guidance programme for neurodiverse students to assist with the transition from education to employment. Initiatives such as neurodiverse alumni mentoring, details on neurodiverse-friendly companies, and greater preparation for the daily life of the work environment were strongly recommended.
Limitations
This study was conducted in one third-level institution in Ireland, and therefore there may be limitations in terms of generalisability across other third-level institutions and jurisdictions. However, the selected institution has a strong access programme and inclusive ethos, and the methodology utilised can be replicated easily to test the findings. Further to this, the project collaborators were drawn from a cohort who was registered as neurodiverse with the university and this potentially excludes those who have difficulty securing a diagnosis and thus perpetuates diagnosis privilege. Finally, the small sample size in this study resulted in not formally reporting on demographics, for fear of identifying the participants. The study did, however, report on the demographics of the third-level institution from which the sample was drawn.
Footnotes
Declaration of conflicting interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Ethics
This research project was approved by a University ethics committee which reviewed and approved a study protocol and all accommodating documentation – information leaflet and consent form. GDPR concepts of privacy by design and data minimisation were followed as best practice.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by a Teaching and Learning Fellowship scheme.
