Autistic women and media representations of autism: A zine-making study

You are invited to take part in research about media representations of autism, hoping to find out how these representations make autistic women and non-binary people feel. Issues impacting autistic women and experiences of stigma and discrimination are top research priorities of autistic people in Scotland (Cage et al., 2022).

We know that there are many stereotypes and misconceptions about autism that are common in society, like the idea that autism is a male condition. We also know that the media plays an important role in how disabled groups are perceived. Media has the potential of both promoting information and awareness about disability, or of reinforcing false and negative stereotypes. We want to understand how autistic women and non-binary people feel about the way autism is currently being portrayed in the media (e.g., films, TV shows, news, books).

This study will use an arts-based methodology called Zine-making. In this activity, participants share their thoughts by creating different forms of artwork (e.g., illustrations, poetry) in a zine format. This study is also participatory – which means the participants will lead the research alongside the researcher! We will discuss and agree on all the aspects of this study together to make sure that our research is relevant and helpful. In the meantime, we anticipate the aims of this study to be:

(a) finding out how autistic women and non-binary people perceive current media representations of autism and 

(b) understanding how these representations make them feel.

This research is part of a PhD project at the University of Stirling. Our research team includes the main researcher, Sarah Dantas, who is a PhD student at the University of Stirling, and three academic supervisors, Dr. Catherine Grainger, Dr. Carol Jasper, and Dr. Monique Botha, all based in the Psychology Department at the University of Stirling.

1. Identifies as autistic (a formal diagnosis is not required).

2. Identifies as a woman or non-binary person.

3. Is aged over 18.

4. Currently lives in Scotland and is able to attend in-person sessions in Stirling.

 

This study will have four meetings. In our first meeting, we will discuss how this study works and explain Zine-making activity. During the other meetings, diffferent art materials will be avaiable to create the zines in a workshop space, where we can all discuss experiences and ideas while crafting together. All sessions will take place in the workshop rooms at the Tolbooth, an arts and culture venue in the centre of Stirling. The break between each session is 2 weeks, so participants will be involved for approximately 6 weeks.

We think the sessions will take up to 2 hours (depending on the level of detail we dive into and how much people want to talk). During the sessions, the researcher will ask you questions exploring the content of the artwork created and how it relates to our research questions (e.g., what does this drawing say about how you feel about media representations of autism?). 

At the end of this study, participants can choose their preferred pieces of art to be included in a community exhibit at the Tolbooth. It's completely up to you if you want your work to feature in the exhibit or not. You can also help us plan the exhibit if you want to. 

Before taking part in the research, we ask you to complete an expression of interest form that includes questions about you and any accessibility needs/preferences you have. We ask you to provide as much detail as you can, so we can think about how to make the study as comfortable and accessible to you as we can.

You can skip any questions you do not wish to answer, but we do need your name and email address so we can contact you for recruitment. Please note that if we receive a high volume of interest in this research, not everyone who completes the expression of interest form will be able to take part and we may have to use a waiting list. If you don’t end up taking part, we will delete all your answers. 

Please read through all the information below before agreeing to participate: 

No. Taking part in this research is voluntary (your choice). You may refuse to take part or drop out at any time. You are free to not answer any question for any reason. If you wish to completely withdraw your answers from the study, you should contact the main researcher (sarah.dantas@stir.ac.uk). You do not need to provide a reason for withdrawing and can withdraw your data up to two weeks after the workshop sessions have taken place (dates to be confirmed). 

Some reflections and discussions in this study may be upsetting or distressing as you consider your own experiences and feelings. We might touch on sensitive topics, such as mental health and stigma. Taking part in a group with other people, they will hear what you share and you will hear what they say too, but we will encourage everyone to keep these discussions confidential. You may also feel tired during sessions, but you will have opportunities to take breaks. You will be free leave the workshop sessions without providing a reason. You can find out more about support for autistic people here.

 

There is no direct benefit in taking part, but your involvement will allow us to conduct research that will be helpful in autistic people's lives and it may be a fun experience for you. Travel expenses up to forty pounds will be refunded if you keep your travel receipts.

We need you to provide us with your name and email address so we can contact you. Once we recruit our final group of participants, these details will be deleted. 

The workshop sessions will be recorded and photographed to help the researchers keep track of what everyone said and what art they are working on. Your contributions in the recordings will be transcribed into a Word document and then the video will be deleted. You will not be identifiable in any of the photographs either, those are just to document everyone's work (e.g., photos of hands painting), which may also feature in the exhibition with your permisiion.

Any identifying information (information that could be linked to you) you share will be removed from the transcript, and the original recording deleted. You can choose a pseudonym (fake name) for yourself, and you will be identified only by that name in our files and in publications.

Your data will be stored in password-protected files which only the research team will have access to. At the end of the research, you will be asked if you wish to be contacted via email about the results of the study and updates on our project. This information (your email) will be stored in a separate password protected file and will not be connected to your contributions in the meetings. As this project involves group sessions, we may use quotes from the things you say when we write up the research findings, but you will not be identified in these quotes. 

The research may be published in academic journals, presented at conferences or shared in blogs or media articles. You will NOT be identifiable in any of these outputs. You can confirm, after you have taken part, whether you would like to be sent updates about our findings and publications.  

The ethical approaches of this project have been approved via The University of Stirling General University Ethics Panel.   

We will be recording your name and email address. This will be processed in accordance with the General Data Protection Regulations (GDPR). Under GDPR the legal basis for processing your personal data will be the official authority of the University.  

 

You have the right to withdraw from this project at any time without giving reasons and without consequences to you. You also have the right to refuse us processing relevant personal data. However, please note that once we have started analysing the data and the results are published, it may not be possible to remove your data from the study.  

If you would like to discuss the research with someone, please contact us at sarah.dantas@stir.ac.uk. If you would like to contact someone not directly involved with the study you can email Professor Paul Dudchenko (p.a.dudchenko@stir.ac.uk), Head of Division (Psychology). 

You have the right to lodge a complaint against the University regarding data protection issues with the Information Commissioner’s Office (https://ico.org.uk/concerns/). The University’s Data Protection Officer is Joanna Morrow, Deputy Secretary.  If you have any questions relating to data protection these can be addressed to data.protection@stir.ac.uk in the first instance.