As part of the ESRC Festival of Social Sciences I have produced a ‘research informed handbook’ that provides a summary of the project so far. Physical copies will be handed out at the launch event, and a PDF is available here:
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The sixth episode of the Ruling Passions Project’s podcast is now live on the podcast page, and also on spotify, apple, google podcasts, amazon podcasts, audible and probably most other podcast places.
Becky Stothard (she / her) works as a study skills tutor, with a background in secondary teaching of Science and PSHE. She was diagnosed autistic as an adult.
In this episode we talk about patterns of behaviour, detail, anatomy, science, history, recipes and knitting, whilst also going off on a lot of other interesting tangents!
Links to some of the things discussed by Becky are available here: https://shu.padlet.org/dscb18/ruling-passions-podcast-6-becky-stothard-5e7kfqt8tlsozvcu
Transcript below:
This is the text of the report that I have submitted to the UKLA to conclude the funded aspect of this project.
UKLA Grant Report – July 2023
Chris Bailey, Sheffield Hallam University
The project
This study explored what are often called the ‘special interests’ of autistic people, using a New Literacy Studies (Street, 2003) lens to illuminate an important dimension of autistic culture. In spite of recent gains made by theorisations drawing on the ‘neurodiversity paradigm’ (Walker, 2021), autistic people’s identities are still subject to widespread misunderstanding and misrepresentation. To honour the complexity of autistic lived experience, this project focused on what have been historically constructed as autistic ‘special interests’ (Robinson and Vitale, 1954), which often involve a passionate focus on particular topics of intense interest. Whilst pathologising, deficit definitions of these interests persists (APA, 2013, p. 50), it is clear that they are in fact wide ranging, valuable, and fluid, forming a highly meaningful part of people’s lived experience of the world.
Whilst Barton and Hamilton’s (1998) literacy-centred concept of ‘ruling passions’ (p.83) was not devised as a description of autistic experience, it provides a useful starting point for this project’s consideration of the intersections between an aspect of autistic culture and a New Literacy Studies (NLS) conception of literacies. Such an understanding of literacy helps illuminate how literacies exist in the interactions between people, rather than being a fixed set of properties residing in (or taken on by) an individual. Here, ‘special interests’ may, in many cases, be understood as literacies in themselves – as ‘ruling passions’ – as well as being entangled within a network of other associated literacy practices. In spite of the potential synergies between NLS and ideas around neurodiversity, relating to power, culture, and the resistance of deficit or normative models of understanding, there has hitherto been almost no connection made between work in these areas. There is also very little work either looking at autistic experience from a NLS perspective, or discussing autistic ‘special interests’ from a socio-cultural perspective.
This research will be of interest to UKLA members and literacy practitioners in a range of contexts. The project aimed to:
- Illuminate the value and complexity of autistic special interests, particularly in relation to broad conceptualisations of literacy
- Raise awareness of the heterogeneity of the autistic experience, complicating reductive understandings of autistic experience in relation to literacy, with the intention of broadening societal understanding of autism
- Consider the relationship between ‘special interests’ and literacy at different stages of life
- Provide teachers and other educators with insights into the implications for literacy teaching and learning in their particular contexts, in relation to meeting the needs of neurodivergent students
- Create conceptual / theoretical links between work on NLS and the Neurodiversity Paradigm (Walker, 2021), uniting scholarship in both important areas
Methods
During this study I engaged with 13 autistic adults about their interests, using a method of their choosing: face to face interview, online interview, telephone interview, email conversation or text chat. I sought their reflections on the role of their self-defined focussed interests in both childhood and adulthood. As an autistic researcher myself this work constitutes a piece of ‘insider research’ (Coles, 2015), abiding by the tenet of ‘nothing about us without us’ (Evans, 2020, p. 226). It also follows the principles of ‘emancipatory disability research’ (Barnes, 2003) in that it is both intended for the audience it is written about, whilst also aiming to amplify marginalised voices for a wider audience. For the purpose of this project, I conceptualised autism as an ‘assemblage’ (Deleuze and Guattari, 1987), unavoidably constructed from medicalised definitions (APA, 2013) but also comprised of wider social and cultural understandings, drawn from the discourse around neurodiversity that emphasises difference rather than deficit.
With an emphasis on multimodal communication, the project also featured contributions to a series of podcasts and a 3d online gallery, to add to the ‘assemblage of autistic perspectives’ shaped by the project (see links below).
Ethics approval was gained from Sheffield Hallam University ethics committee before data generation activities were undertaken.
Research Findings
Participants’ outlined a range of varied ‘Ruling Passions’. These were related to literacies in multiple ways. Many participants referred to reading as a passion in itself, whilst others read avidly around a particular subject or genre. This included both fiction and non-fiction texts – in contrast to outdated framings of autism (eg. Autism Quotient (AQ) test, a ‘brief assessment instrument’ devised by Baron-Cohen et al. 1998) that suggest a preference for non-fiction, and describe a more restricted literacy experience associated with autistic experience.
Language was also a passion for some participants, with examples being ‘language and patterns’, ‘the origins of words’ and ‘linguistic evolution in minority spaces’.
Participants identified a significant relationship between their ruling passions and positive wellbeing. Engaging with Ruling Passions avoiding negative affective states and generating positive ones. They were considered by participants to be ‘a necessary part of being healthy’ and linked to ‘recovery from autistic burnout’.
Many participants reported negative school experiences, with bullying and isolation being identified by several individuals.
Ruling Passions were integral to several autistic people’s meaning making and sense making practices – closely aligned with helping them achieve clarity of thought and understanding of the world.
In spite of this, participants could recall few examples of their interests being harnessed in educational contexts, a notable exception being a participant who was schooled at home by a parent.
Ruling Passions were inextricably linked with the identity of the autistic person in several complex ways. For example, for some participants they were a tool for pushing back against normative expectations, establishing a sense of outsider-ness or belonging. In other cases, an identity marker was itself the focused interest. eg. gender or autism.
Ruling Passions were a key means of developing meaningful relationships with others, through the generation of ‘affinity spaces’ (Gee, 2004) or ’communities of practice’ (Lave and Wenger, 1991).
Ruling Passions also provided some with an organisational framework for life – giving meaningful structure to the patterns of the days, weeks, months and years.
Ruling Passions were also often linked to particular autistic sensory dispositions, and there were strong links between ‘special interests’ and the form of sensory self-stimulation known as ‘stimming’ eg. through music or movement.
These findings will be expanded on further in future outputs. Further work is planned to extend this work to include autistic participants with learning disabilities.
Outputs / Further information
An article exploring the significance of this project for literacy teachers can be found in the recent special edition of Literacy focussing on Social Justice. This, in particular, features recommendations for classroom teachers in relation to ruling passions and reading. I also elaborate on the underpinning concept of ‘Neurodivergent Literacies’. This article is Open Access and therefore available to all: https://onlinelibrary.wiley.com/doi/epdf/10.1111/lit.12320
A series of podcast interviews on the topic of Ruling Passions can be found here. You can also subscribe to this on all major podcasting platforms and therefore receive alerts to new episodes as they are made available.: https://rulingpassions.wordpress.com/category/podcast/
A 3D Gallery featuring art work submitted by participants can be found here: https://rulingpassions.wordpress.com/2023/03/24/3d-gallery/
There is a project Twitter account @rulingpassions_ or contact me at c.bailey@shu.ac.uk for further information.
References
AMERICAN PSYCHIATRIC ASSOCIATION (APA) (2013) Diagnostic and Statistical Manual of Mental Disorders (DSM-5). American Psy-chiatric Publishers.
BARON-COHEN, S., WHEELWRIGHT, S., SKINNER, R., MARTIN,J. and CLUBLEY, E. (2001) The autism-spectrum quotient (AQ):evidence from Asperger syndrome/high-functioning autism, males and females, scientists, and mathematicians. Journal of Autism and Developmental Disorders, 31.1, pp. 5–17.
BARTON, D. and HAMILTON, M. (1998)Local Literacies: Reading andWriting in One Community. London: Routledge.
COLES, B. (2015). A ‘Suitable Person’: an ‘insider’ perspective. British Journal of Learning Disabilities, 43(2), 135-141.
DELEUZE, G. and GUATTARI, F. (1987)A Thousand Plateaus. USA:University of Minnesota Press.
EVANS, M. (2020) The Autistic Genoside Clock in S.K. Kapp (ed.) Autistic Community and the Neurodiversity Movement. Palgrave Macmillan.
GEE, J. P. (2004). Affinity spaces. Situated language and learning: A critique of traditional schooling, 77-83.
LAVE, J., & WENGER, E. (1991). Situated learning: Legitimate peripheral participation. Cambridge university press.
ROBINSON, J. F. and VITALE, L. J. (1954) Children with circumscribed interest patterns. American Journal of Orthopsychiatry,24.4, pp. 755–766.
STREET, B. (2003) What’s“new”in new literacy studies? Critical approaches to literacy in theory and practice.Current Issues in Com-parative Education, 5.2, pp. 77–91
WALKER, N. (2021)Neuroqueer heresies. La Vergne: Autonomous Press.
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Literacy Article
The first academic article arising from the project has been published today. It is part of a special edition of the ‘Literacy’ Journal on Social Justice. The paper is open access and can be found here: https://onlinelibrary.wiley.com/doi/epdf/10.1111/lit.12320
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3D Gallery
Today I have launched the 3D Gallery linked to the project. During the project, participants have been invited to submit images that reflect or represent their experiences of their Ruling Passions. You can find these images in a 2D Gallery, or click on the image below to be taken to an interactive 3D Gallery. In both cases you can click on the images to read more from the people who submitted them.
Thank you to everyone who submitted images. There is still a second room waiting to be filled, if anyone else would like to contribute.
The fifth episode of the Ruling Passions Project’s podcast is now live on the podcast page, and also on spotify, apple, google podcasts, amazon podcasts, audible and probably most other podcast places.
Dr. Nick Walker is a queer, transgender, flamingly autistic writer and educator known for her foundational work on the neurodiversity paradigm and Neuroqueer Theory, and her contributions to the emergent genre of neuroqueer speculative fiction. She is co-author of the urban fantasy webcomic Weird Luck, and author of a handful of short stories and the essay collection Neuroqueer Heresies. As Managing Editor of the worker-owned indie publishing house Autonomous Press, she has co-edited and contributed to multiple volumes of the annual Spoon Knife neuroqueer lit anthology. Dr. Walker is senior aikido instructor at the Aiki Arts Center in Berkeley, California, and a professor of psychology at California Institute of Integral Studies.
In this episode we talked about akido, world building, story and character creation, collaboration, comics, autism, trans experience, the comics of Matt Howarth and Nick’s literary works, including the Weird Luck web comic (available here: https://weirdluck.net/comic/1-1-0-the-swiftcorp-incursion/)
Special thanks to Robert Chapman who let me record this episode in their spare room!
There is an (unedited!) video version of this episode available here: https://www.youtube.com/watch?t=8&v=c2w9Z7WMC0w&feature=youtu.be
Links to some of the things discussed by Nick are available here: https://shu.padlet.org/dscb18/i3zo84abx2yn13wo
Transcript available below:
The fourth episode of the Ruling Passions Project’s podcast is now live on the podcast page, and also on spotify, apple, google podcasts, amazon podcasts, audible and probably most other podcast places!
[Content warning] this episode includes mention of trauma, challenging early autistic experiences, mental health, food / eating and dysphoria.
There is some background noise in this episode as Billie was in a cafe. There is also some swearing.
In this Episode I talk to Billie Jo Gibson (he / they) who is a National Equity, Diversity and Inclusion officer for the Northern Idependence Party and works in a hospitality job. Billie was diagnosed autistic when they were four years old.
In this episode we talk about early diagnosis, friendships, masking, growing up, Speech and Language therapy, forced social interaction and growing up as an autistic child, self-acceptance, gender identity / being trans, hyperfocus, childhood special interests, politics, class, the cost of living crisis, issues with the Labour Party, Northern Independent Party, Democratic Socialism, Disability and PIP assessment, trauma and mental health assessment, Grand Theft Auto and Liverpool / Scouse Culture.
Additional multimedia links and transcript available below…
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Podcast: Episode 3
The third episode of the Ruling Passions Project’s podcast is now live on the podcast page, and also on spotify, apple, google podcasts, amazon podcasts, audible and probably most other podcast places!
In this episode I talk to Katie Twomey (she / her) about her interests. Katie was diagnosed autistic at age 37. She is a Lecturer in Language and Communicative Development at the University of Manchester. We talk here about language, Chernobyl, pattern recognition and making connections, alternative futures, the global pandemic, working conditions, lacking inner voices, aphantasia, synethesia , maths, reading, podcasts, collecting conkers, challenges around communication, autistic movement, masking, gendered conditioning and… being a magical unicorn.
Additional multimedia links and transcript available below…
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Podcast: Episode 2
The second episode of the Ruling Passions Project’s podcast is now live on the podcast page, and also on spotify and apple.
In this episode I talk to Jason Arday (he/him) about his love of music and how it has helped him understand the world. Jason was diagnosed autistic at 3 years old. He has recently been appointed professor of the sociology of education at the university of Glasgow. In our discussion we touch on a range of topics including race, autistic masking, vulnerability, intrinsic / extrinsic motivation, expectations of academia and the importance of music.
Additional mulitmedia links and transcript available below…
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Podcast Launch: Episode 1
The first episode of the Ruling Passions Project’s podcast is now live on the podcast page, and also on spotify and apple.
In episode 1 I talk to Pip Brown (they / them) about their ‘intense interests’ in Music and Portraiture. During the discussion we touch upon several topics including sensory experience, alexithymia, embodiment, LGBTQ+ heroes, visualisation, parallel play, flow and burnout… Some of the cultural reference points include David Byrne, Billy Tipton, Paul Ekman, Steve Reich and Csikszentmihalyi’s concept of ‘flow’.
Additional multimedia links and transcript available below…
Ruling Passions 