Title: ‘Ruling Passions’: A socio-cultural / New Literacies perspective on Autistic Adults’ interests and passions.
A Concise Summary: This project is about what are often called the ‘special interests’ of autistic people. I am a lecturer in Education and I am also autistic. I know from my own experiences, and from reading about the experiences of other autistic people, that these ‘special interests’ aren’t as simple as many people say they are. For instance, some of the writing around Autism, which is used for diagnosis, calls these interests ‘restrictive’ and ‘narrow’, even when autistic people get a lot of benefits from their interests. To learn more about ‘special interests’, I am asking some autistic people, age 18 and above, to answer some questions about their interests. People can take part by talking to me online or in person, or by answering questions using text in a questionnaire or email. Some of this project involves looking at how ‘special interests’ relate to literacy. Literacy often involves reading, writing and communicating with others in different ways. This does not always involve words – it can involve pictures, films, sound for example. I hope that this research helps people understand more about special interests, and what they mean to austistic people. It could, for example, help teachers understand how to better help autistic pupils by bringing their interests into the classroom.
More detailed participant information
I am seeking autistic participants to take part in a study around autistic special interests. The project is open to anyone who is autistic (whether through self-identification or otherwise) and over 18 years of age. It is entirely up to you to decide if you want to take part. Even if you give consent (using the online form) you can still decide to withdraw at any time without giving a reason, or you can decide not to answer a particular question.
This research project has been created to explore what are often referred to as the ‘special interests’ of autistic people. These interests often involve a passionate hyper-focus on particular topics of intense interest. In spite of recent gains made by theorisations around neurodiversity (Singer, 1999; Silberman, 2015; Milton, 2020) working to shift society’s understanding regarding the varied nature of human minds, autistic people are still subject to widespread misunderstanding and misrepresentation, often in the face of societal and institutional power inequalities.
There are some quite narrow, medicalised definitions of these interests. For example, the most recent diagnostic literature refers to these as ‘highly restricted, fixated interests that are abnormal in intensity or focus’ (APA, 2013, p. 50).
However, it is clear from my own experiences as an autistic person, and from the narratives of others, that such interests are in fact wide ranging, valuable, and fluid, forming a highly meaningful part of people’s lived experience of the world.
I intend to forefront the personal stories of autistic people, in relation to their special interests. Initially, I am looking to engage with 6 autistic individuals either online or in person, using an interview or questionnaire, depending on the participant’s preference.
In this work, I am drawing on ideas from a perspective called New Literacy Studies (Street, 2012) which understands literacies as being much more than the kind of practices that get taught around reading and writing in schools. The phrase ‘ruling passions’ from the title of this project originates from Barton and Hamilton’s (1998) work around literacies. Whilst their concept of ‘ruling passions’ was not devised as a description of the autistic experience, it provides a useful starting point for this project’s consideration of the intersections between an aspect of autistic culture and a broad New Literacy Studies (NLS) conception of literacies. Such an understanding of literacy helps us to see how literacies exist in the interactions between people, rather than being a fixed set of properties residing in (or taken on by) an individual (Barton and Hamilton, 2003). 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.
Ethics approval has been granted by the Sheffield Hallam University ethics committee
Participation
Initially, I am looking to engage with 10 – 12 autistic individuals either online or in person, using a conversation, interview or questionnaire, depending on the participant’s preference. I am asking people who would like to participate in the study to register their details using the following short online form. Once I have received your response I will get back in contact with you to invite you to contribute on the basis that you outline on the form.
Interviewees will also be invited to a) contribute to an online gallery showcasing work around their interests (publically available and linked to the project website) and b) an audio podcast (made publically available on the project website and via podcast providers) which will discuss the findings of the project. These two aspects are inteded to open up the findings beyond an acacademic audience, but are also optional aspects of the project.
You can still decide to withdraw at any time without giving a reason, or you can decide not to answer a particular question. You can discuss your participation with me at any time – prior to the project, during or after by using my contact details below. Obviously once your data was published there would not be a chance to withdraw, but I intend to confirm any transcripts with you before using the data in this way.
I intend to anonymise any data by providing a pseudonym. Every attempt would be made to ensure that you could not be connected with what is recorded and reported. I will use the University’s networked Research Store for all anonymised master copies of our data. Data is backed up automatically on a daily basis, and can be fully recovered in the case of accidents. All backups are securely kept on two remote locations for a period of 90 days. Access to all folders is restricted to researchers, students and external partners working on the project. At project close down relevant data relating to this project will be securely archived, and all data will be deleted from the Research Store.
All data will be stored on a university drive accessibly only to the researcher on the project. Data will be deleted after seven years from the last access.
You can contact me using the details below to discuss any aspect of the study, including the findings.
Researcher Details:
Dr. Chris Bailey, Sheffield Hallam University, Arundel Building, Sheffield, S1 2NH
Email: c.bailey@shu.ac.uk
There is a project blog at: https://rulingpassions.wordpress.com/
A more detailed overview of the project can be found here: https://rulingpassions.wordpress.com/more-info/
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Ruling Passions 