This project explores how autistic young people experience and use social media. The study focuses on:

• the social media resources available to them;
• how these are used to interact with others;
• how they support engagement with shared interests.

By examining affinity spaces, the project aims to deepen understanding of autistic people’s communication styles and social relationships in interest-focussed online spaces.

Research questions

• The social media resources available to them;

• How these are used to interact with others;

• How they support engagement with shared interests.

• How do autistic young people use social networking spaces (SNS) affinity spaces to establish and manage social bonds?

• How might current research on how people use different digital tools help us better understand their interest-driven communication?

• To understand what technology options young people, choose or avoid in affinity spaces, and why.

• To examine how language and other semiotic resources (e.g., still or moving images) are used in affinity spaces.

• To develop visual creative methods to explore how young people experience interactions in affinity spaces.

• To affirm autistic neurodiversity by supporting autistic strengths in interest-driven communication and interaction.

• To increase awareness of the role played by interest-driven communication in the lives of autistic people.

Many autistic secondary school and university students report poor social experiences. While most research has focused on young children, far less is known about how to support young people when they leave school.

Young people regularly engage with social networking spaces (SNS). Autistic young people are often drawn to online platforms where they can connect with others over shared interests, such as art of comics. These online communities, often referred to as “affinity spaces” are a valuable opportunity for understanding social interactions outside of school. Focussed (or special) interests are a common feature of autism, and these interests tend to be more specific, long-lasting and intense.

This project addresses important gaps in research and contributes to a better understanding of autistic communication preferences, with a focus on a particularly important life stage. It also supports efforts to design online spaces that are more inclusive and supportive. The project aligns strongly with our Moonshot Vision towards a society that works for autistic people, specifically its ambition to create inclusive public spaces (online and offline) that have autistic people’s needs recognised and supported appropriately.

Throughout the project, the researchers are working closely with an advisory panel of young autistic people and us, the National Autistic Society, to make sure the research reflects lived experiences and priorities.

The project uses a range of data collection methods such as survey, individual and group interviews, and an observation of online activities to:

• capture both public online behaviour and private feelings (e.g., feelings or anxiety when posting);
• identify what works well for autistic young people on social media, as well as factors that may be driving young people away.

There are four stages to this project:

1. Identify popular affinity spaces

A survey co-developed with our autistic advisory panel explored SNS use, types of affinity spaces and user preferences. Interviewees also guided researchers through relevant SNS spaces.

2. Examine features of affinity spaces

The researchers observed public content in affinity spaces via the “follow” button. Analysis will be conducted on participants’ sensitivity to various contexts, and the changes/continuities in the use of textual, visual and tagging features.

3. Explore lived experiences

Participants were given a private account to submit captioned images as a diary, reflecting on everyday participation in affinity spaces. Individual and group interviews invited participants to discuss selected images and public posts, including positive and negative experiences and any pressure to change behaviour.

4. Support autistic strengths

Findings from earlier stages will be analysed to identify strengths linked to different features of affinity spaces. Workshops with our autistic advisory panel will explore appropriate strategies for supporting interest-driven interaction across different online environments.

Often, discussions about autism and technology fall into one of two extremes – autistic people are either naturally ‘tech-savvy’ or struggling with cyberbullying and ‘excessive’ screen time. Instead, this research advocates a more nuanced understanding of both the benefits and challenges of social media.

1. Autistic young people experience a lot of anxiety when interacting online. For example, participants worried that other social media users would judge them for their interests or communication styles. Others feared being misunderstood or accidentally breaking the ‘rules’ of an online group. As a result, some users were not able to interact as much as they wanted to.

2. Because of these anxieties, autistic people often ‘mask’ when interacting online. This could involve not talking about being autistic, rewriting posts to sound more ‘polite’, or pretending to be less enthusiastic about interests. This kind of masking could make social media a lot more tiring to use.

3. On the other hand, social media can also be a source of a joy and social connection. Joining online groups where everybody shares the same interests could help people feel less isolated. These groups also gave people the opportunity to showcase passion and be recognised as an expert. While many did have to mask, other participants said that social media provided a space for more authentic self-expression.

• Neyla Koteyko (Project Lead) is a Professor at Queen Mary University of London. She is interested in developing theories and methods that help us understand how people construct identifies when they used media technologies.

• Martine van Driel (Collaborator) is an Assistant Professor at the University of Birmingham. Her research focuses on connecting digital media and autistic communication.

• Laura Crane (Collaborator) is a Professor at the University of Birmingham. Her research focuses on identifying evidence-based ways to support autistic people in the fields of education, healthcare and criminal justice.

• The research team is supported by Jessica Aiston (Research Assistant), Flo Bremner (Research Assistant), and Marijke Anbeek (Research Project Administrator).

The wider project team include collaborators from Goldsmiths University, Durham University, University of Surrey, Autistic Girls Network, Living Autism, Ambitious about Autism, and ourselves.

Our charity is helping to ensure autistic voices and experiences shape the project from start to finish. We brought together an advisory group of four autistic people with a range of relevant lived experience. The group meet with the research team periodically.

We are also supporting with participant recruitment, project team meetings, review key documents, and share updates and findings.

This project is taking place over six years from July 2023 to June 2029.

Project website: Autism in Affinity Spaces