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

这项拟议的研究将对自闭症成年人如何使用社交网站/社交网络进行社会互动提供系统的语言学和人种学分析。在过去的几十年里，有记录的自闭症患病率急剧上升，据估计，英国有1%的成年人患有自闭症谱系障碍。大多数自闭症研究、技术设计和服务提供都集中在无法独立生活的儿童和成年人身上，很少关注如何支持成年人在工作和社会参与方面取得成功。人们认识到在线社交在建立和维持社会关系方面的重要性，这使得人们更加关注社交网络，将其作为社交参与和提供社会支持的空间。我们的总体目标是研究基于社交网络的互动和建立关系的机会以及数字监控是如何塑造自闭症用户体验的，以及对社交和技术背景下的交流实践的理解如何有助于设计有利于自闭症的社交网络环境。具体地说，该项目将通过四个工作包实现以下目标：(1)观察人口统计上不同的自闭症Facebook和Twitter用户的在线行为；(2)对这些成年人进行半结构化访谈，以考察影响他们社交网络互动的个人动机和社会规范；(3)分析自闭症社交网络用户在线对话主题的程度和方式；(4)与自闭症成年人合作，综合这些分析的结果，确定使用SNS的促进和抑制因素，并研究软件联合设计的机会。通过借鉴语言人种学、残疾研究和人机交互设计的进展，我们将能够检验社交网络中自闭症社交的多维和动态性质。这一结果将为更广泛的关于社会孤立群体使用SNS的辩论提供信息，并提供对影响自闭症用户SNS互动的背景参数的经验理解。这样的理解对于将自闭症支持从个性化的、基于行为的干预转向以社区和网络为中心的方法至关重要。

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.