Autistic adults online: Understanding and enabling autistic sociality in digital networking environments

The proposed study will provide a systematic linguistic and ethnographic analysis of how social networking sites/SNS are used by autistic adults for social interaction. The last few decades have witnessed a dramatic increase in the recorded prevalence of autism, with an estimated 1% of the adult population in the UK having an autism spectrum disorder. Most autism research, technology design, and service provision has focused on children and adults who cannot live independently, with little attention to how adults can be supported to succeed in work and social participation. The recognised importance of online networking in initiating and maintaining social connections has led to an increased focus on SNS as spaces of social engagement and social support provision. Our overall aim is to examine how the SNS-based opportunities for interaction and relationship building but also digital surveillance are shaping autistic user experiences, and how the understanding of communicative practices in their social and technological contexts can help design autism-friendly social networking environments.

Specifically, the project will pursue the following objectives via four work packages: (1) observe online behaviour of a demographically diverse group of autistic Facebook and Twitter users; (2) conduct semi-structured interviews with these adults to examine both individual motives and social norms shaping their SNS interactions; (3) analyse the extent and the ways autistic SNS users align in online conversation threads; (4) in collaboration with autistic adults, synthesize findings from these analyses, identify the enabling and inhibiting factors emerging from SNS use, and examine the opportunities for software co-design.
By drawing on advances in linguistic ethnography, disability studies, and human-computer interaction design we will be able examine the multi-dimensional and dynamic nature of autistic sociality in SNS. The results will inform a broader set of debates about the uses of SNS by socially isolated groups as well as provide empirical understanding of the contextual parameters that shape SNS interaction of autistic users. Such understanding is crucial for moving autism support beyond individualized, behaviour-based interventions and towards community and network-centred approaches.

We will work with three different user groups in order to ensure impact:
(1) Autistic adults

Autism represents a serious clinical and financial challenge to the UK. Given that interactional preferences, challenges with reading facial cues as well as logistical barriers to support lead to a higher likelihood of autistic adults selecting online sources of social engagement and support, it is particularly important that there be greater clarity about how digital social networks are used for social interaction in the everyday, and how such interactions are shaped by specific social and technological contexts. The views of autistic people will inform project development from the start through inclusion of autistic members into the Steering Group. Early in the project we will also hold a workshop with autistic people to create tailored recruitment, consent seeking procedures and materials. Collaboration and involvement will continue throughout the project through interviews and workshops in the final year (moderated with the help of the research charity Autistica - our collaborator on this project). The participatory approach within a cross-disciplinary qualitative framework will enable in-depth understandings of communicative practices through inclusion of autistic voices and experiences.

(2) Support and advocacy organizations
In addition to our collaboration with Autistica we will engage with a number of autism support and advocacy organizations via stakeholder workshops (e.g. Autism Alliance which is a network of 17 UK Charities). Staff and volunteers working at these organisations play a key role in conveying information about the social networking technologies to existing and potential users and, in some cases, are directly involved in developing the relevant software or moderating the platforms. Through collaborative workshops with their representatives our research findings will inform best practice in informing and supporting autistic individuals who use digital networking environments for social participation and/or social support.

(3) Software developers and design professionals
We have extensive links with design professionals and software developers through Co-I's work and leadership of projects at the intersection of research and practice. The proposed approach of focused ethnography will provide qualitative insights in terms of factors that inhibit and promote uses of digital platforms. At present there is a lack of knowledge about contextual factors that may influence the success of social engagement and support initiatives that rely on digital networking platforms. The project will identify these factors in relation to autistic adult users and help establish their significance through collaborative workshops. The primary outcome will be a design toolkit - set of design resources that will provide a tangible description of online communicative practices of the diverse group of autistic users and underlying situational factors.

Representatives from these groups will be part of our Steering Group which will meet to review and exchange ideas about research design and initial results, and work with the team on impact plans.