Alex Chand, Rebecca Lewis and Anna Stenning discuss research that highlights the role of autistic students in dispelling myths about both autism and the epistemic authority of the arts and humanities.
We are four autistic arts and humanities researchers who came together to explore whether we could identify and potentially intervene against the difficulties that autistic peers face. According to research by Disabled Students UK, 36 percent of autistic undergraduate students who enrolled in 2019 did not complete their degree after three years (North East Autism Society 2023), a higher proportion than for any other disabled student group, while the University of Durham found that 54 percent of autistic students experienced difficulties with their mental health (Gurbuz et al 2018). We believe that asking whether autistic students, who are entering HE at higher rates than before, are valued by HE providers may also lead to identifying barriers to developing a more inclusive HE culture in general as well as benefitting autistic students in particular. We hope that in talking about our own experiences, alongside conversations with peers and networks, we can highlight the role of autistic students in dispelling myths about both autism and the epistemic authority of the arts and humanities.
In our discussions we found evidence that challenged the utility of either a deficit-based-approach to student support or one that relies on the disposition of academic staff. The post-Equality Act inclusion agenda within institutional life more generally turns those who have formerly been excluded into the targets of benevolence, but this is often without an understanding of what has led to historical exclusions or a basic understanding of the social model of disability. Yet within humanities subfields such as literary disability studies and medical humanities, there is a growing body of work looking into the ideological basis of contemporary understandings of intelligence and normality, providing the means to tackle disablist practices. We therefore argue for the need to move beyond fragmentary efforts to ‘include’ autistic people, or to present case studies and depersonalised knowledge about autistic people in general, and towards applying this scholarship to make research and learning spaces accessible for different kinds of minds.
In addition to the possibility of drawing on discipline-specific knowledge about the roles of culture and ideology in changing attitudes to difference, we identify the strengths of humanities research methods that produce nuanced and contextualised understandings of processes of cultural change and, as part of this, argue for the importance of registering autistic students’ agency in developing solutions to cultural challenges within HE. We write in a ‘we’ form although recognising different positionalities, based on what we found through making personal zines, conversations with organisers of peer networks for neurodivergent students and staff, and questionnaires for students engaged in literature degrees. We suggest a range of possible solutions to the difficulties that autistic students face, including those who are self-identifying and who belong to other minority groups.
Practical challenges and emotional labour
Current institutional support systems for autistic students in all fields rely on the student to apply for, access and implement all their own support. This is done, in part, with the aim of equipping autistic students with the strategies to access university independently. However, this approach fails to recognise the emotional labour and practical challenges of doing so, for both students and staff. When we place the responsibility of support solely upon autistic students and academic staff, the latter of whom often have no training in the best ways to support neurodivergent students and a minimal understanding of the social model of disability, there are inherent flaws. Firstly, this approach implies that neurodivergent students possess a profound understanding of pedagogical systems that we have not yet experienced, as well as an awareness of the various support options that may be available to us. And secondly, it presumes that we will have the capacity and resources to advocate for our needs to staff when this may conflict with our desire to be seen to fit in.
For this reason, we asked a ‘neuromixed’ group of students on English Literature degrees about their experiences of accessing institutional support. We learned of conflicting experiences of the support process. One student without a formal diagnosis found it was easier to access support from their lecturers, rather than through institutional systems. Another chronically ill student reported not having any support from the university’s disability services, despite being registered.
In general, support seems to be put in place after the crucial early days of navigating university. Research by the Autism & Uni Project, which surveyed both students who had withdrawn from university and those that completed their course, found that 14 percent of autistic students did not receive any support during their studies, and of those that did, 48 percent did not receive it until after their first semester. They noted that ‘timely support, or the lack of it, was a key factor in retention of these students’ (Fabri et al. 2016).
Subject-specific challenges and opportunities for autistic students
In navigating the university social environment, autistic and otherwise neurodivergent respondents consistently report not feeling able to be themselves. One respondent notes that they feel they are ‘always masking’, specifically, ‘pretending to be more confident’ and ‘comfortable in the social/academic situations’ than they are. These experiences of ‘masking’ and ‘camouflaging’ are not unique to higher education. As Hull et al. note in a 2017 study examining social camouflaging in autistic adults, ‘camouflaging’ consisted of a ‘combination of masking and compensation techniques’, which they found resulted in both short and long-term ‘exhaustion’ (Hull et al. 2017). We suggest that this may be particularly acute in the arts and humanities, where opportunities for interaction in discussion are often based on first impressions and being perceived as fitting in.
As another survey respondent notes, they immediately felt calmer in environments where they were either taught or interacted with other autistics, ‘knowing … there is lesser chance of being [negatively] judged for behaviours’. By de-emphasising a culturally rigid set of expectations and implicit rules for judging the effectiveness of social interaction, and by creating more flexible opportunities for social engagement, we believe institutional spaces will be more accessible to not only neurodivergent but also other minority groups.
One respondent notes: ‘White autistic colleagues of theirs get more understanding and support’ while ‘autistic people from minority ethnicities are… frequently characterised maliciously’. We see an urgent and critical need to address barriers to access that are intersectional in nature, not just on a superficial level in considering the needs of both minority and disabled students, but in a critically informed way that centres and prioritises dismantling barriers for multiply marginalised students.
This could begin with core modules, where we can begin to dismantle the very real hegemonic white gaze in our approaches to literature and associated entanglements with discourses of power, privilege, race, class, disability, gender, and sexuality by encouraging new research methods, theoretical perspectives, reading practices and potentialities for engaging with the figurative (including neurodivergent and autistic ones) (Lawrence 2020).
Understanding what helps
Our project showed that arts-based methods can dig deeper into experiences that cannot be captured by questionnaires or measurement scales. We propose that alongside approaches based on aiming to capture autistic people’s experiences at a particular time and independently of the systems in which they are interacting (which are often far from transparent), we create spaces that allow individuals to conceptualise and explore the many dimensions of academic life in ways that reinforce a sense of our own distinctive perspective and values. Arts based methods can help to articulate complex experiences, and record highly localised processes.
In our work together and in an earlier collaboration with the Neurodiversity at Oxford network, we learned how these kinds of practices often support non-spoken and asynchronous methods of communication, which can facilitate a feeling of belonging. We have also realised the importance of not only examining difficulties but sharing opportunities for expression and shared interests.
These methods can also be used to create a more inclusive environment for other minority groups who experience barriers to engaging with the implicit rules and perspectives of mainstream culture. Through developing spaces for expressive freedom, we can then register the individuality and distinctive capacities of neurodivergent students and researchers. This moves the discussion from how we can instil autistic students with normative models of social connection and belonging, which rely on masking, and towards recognising that autistic students matter, both individually and collectively, to the richness and diversity of cultural life.
Developing interdependence
We do not think that autistic and neurodivergent students should be alone in articulating this, and we recognise the value of networks that include different positionalities, including both students and researchers, of those who identify as neurodivergent, disabled, Mad, and neurotypical to share the labour of understanding each others’ specific needs and capacities. This may also involve identifying structural issues. Dr Laura Seymour, who was a founder of Neurodiversity at Oxford explains,
One way that these networks can be helpful is in exposing that what might seem like an individual employee or student being difficult and being a lone complainer is actually a structural injustice that affects many neurodivergent people.
Interview with authors
However, such networks are often reliant on the labour of precariously employed and disabled staff and students, and Laura Seymour argues that there are issues that ‘need to be dealt with by a trained professional who is paid to deal with them’.
Many HEIs do have specialist support for autistic students, although this is typically utilised most by those in STEM subjects, since these typically attract a higher number of autistic students. Sharron Sturgess, who is a Study Adviser for autistic students at the University of Leicester, explains her work as involving ‘educating the University, educating my colleagues across the institution, in things like universal design, and the double empathy [problem]’ (Milton 2021). Her work includes encouraging academic staff to recognise the plurality of ‘social communication needs’. Like many other specialists in disability support, Sharron is a researcher in her own right, has both knowledge and practical expertise could guide other universities.
Sturgess and Seymour suggest the need for collaborative efforts to develop universal design in higher education—that is, a university environment that is accessible to all students regardless of cultural background and disclosed neurodivergence or familiarity with its ideas. The ‘diversity’ embraced by the neurodiversity paradigm should therefore not be read as attachment to diagnostic categories or to embracing only those differences that are currently seen as beneficial to academic learning. Instead, it suggests the ‘importance of questioning normative assumptions around expected student learning behaviours’ (Spaeth and Pearson 2021). Through bringing in perspectives and theory that show how dominant epistemologies within higher education have reinforced existing social hierarchies, we bring an urgent criticality to the processes and outcomes of research and pedagogy. At a time of increasingly binarized political arguments, we need to enable HE to be a place where, in the words of Laura Seymour, anyone ‘feels safe and empowered to share their differing perspectives and views’.
Data from the wellbeing questionnaire for autistic and neurodivergent students on degree programmes in English Literature in the UK will shortly be available on an open access basis. Please contact the authors if you are interested in finding out more.
With thanks to Abs Ashley, Annie Hine, Laura Seymour, Amy Pearson, Louise Creechan, Sharron Sturgess and Harriet Canon.
About the authors
Alex Chand is an MFA student in creative writing at the University of Mississippi and MA student in English Literature at the University of Leeds. She is the recipient of a Fulbright grant and an alumnus of Barbican Young Poets. You can find Alex on the web at https://alexchand.com.
Rebecca Lewis is an MA Medical Humanities student at Durham University. She graduated earlier this year with a BA in English Literature from the University of Leeds.
Anna Stenning is a Research Associate based in the Durham Institute for Medical Humanities and the Durham University School of Education. She is an interdisciplinary medical humanities researcher and co-editor of Neurodiversity Studies: A New Critical Paradigm, with Hanna Bertilsdotter-Rosqvist and Nick Chown, and author of the forthcoming Narrating the Many Autisms: Identity, Agency, Mattering, which will be available from Routledge on an open-access basis from January 2024. She can be contacted on anna.c.stenning@durham.ac.uk.
Annie Hine has recently completed a master’s in Creative Writing from Durham University, having previously graduated from Lancaster University with a bachelor’s in Natural Sciences. She is currently volunteering for an open access non-profit academic publisher.
References
Autism North East. 2023. ‘Autistic students most likely to drop out of university: investigation’, Autism North East News (March 2023) https://www.ne-as.org.uk/news/autistic-students-most-likely-to-drop-out-of-university
Fabri, Marc et al. 2016. ‘A guide to best practice in supporting higher education students on the autism spectrum – for professionals within and outside of HE’ (2016) https://www.ed.ac.uk/files/atoms/files/autismuni_best_practice_guide_02.pdf
Gurbuz et al. 2019. ‘University Students with Autism: The Social and Academic Experiences of University in the UK’, Journal of Autism and Developmental Disorders 49 (2019), pp617–631.
Lawrence, Claire et al. 2020. ‘Using an arts-based design to explore the experience of shared reading: a pilot study’, Journal of Arts and Communities, 12.1-2 (2020) 85-103.
Lawrence, C., Rimmer, J. and Quickfall, A. 2020. ‘Using an arts-based design to explore the experience of shared reading: a pilot study. The Journal of Arts and Communities, 12 (1-2) 2020. pp. 85-103. ISSN 1757-1936
Milton, Damian. 2021. ‘On the Ontological Status of Autism: the “Double Empathy Problem”’, Disability and Society, Vol. 27.6 (2021): 883-887.
Spaeth, Elliot and Amy Pearson. 2023. ‘A Reflective Analysis on Neurodiversity and Student Wellbeing: Conceptualising Practical Strategies for Inclusive Practice’, Journal of Perspectives in Applied Educational Practice, 11.2 (2023) 109-120.
