Andrew is a 19-year-old college student with Asperger’s syndrome. He lives with his mother and younger brother. Although he is moderately independent, managing his life under his mother’s proactive guidance, he struggles with building a robust and sufficiently large network of people who can provide advice about everyday situations.
We investigate how a social network site helps young adults with autism garner social support from members of networks online beyond their immediate family and friends. We asked three adolescents and young adults with Asperger’s syndrome to use a particular cross-platform social network site, GroupMe, for four weeks to create their own support networks and request help or advice from the network members. We explore a specific feature of GroupMe that allows users to define a small set of members, a “circle,” with whom they will participate in shared discussions.
We examine how the use of circles influences how an individual with autism might reach out to people beyond a primary caregiver for advice on everyday life skills. In addition, we analyze the types of queries asked and the patterns of communication among members of circles. Finally, we determine how conversation over GroupMe impacts the relationship between an individual and circle members.
The results of the study led to several interesting findings:
- Limited changes to the members of the circles: All participants (three individuals with autism) created a single circle and kept the circle closed with 5-7 members.
- Shared responsibility for initiating and responding: GroupMe encouraged individuals with autism to initiate communication. It also redistributed responsibility for responding across members within a circle.
- The most frequently discussed topic was an ongoing issue that all of the participants with autism faced—that of socializing. Participants did not ask questions about some sensitive topics such as personal hygiene management.
- GroupMe led to an increased sense of closeness to members whom participants did not know well prior to the study.
- Offline socialization that occurred with GroupMe interaction was clearly positive experiences both for the young adults, and for their caregivers who want their children to seek social opportunities.
- A shared discussion thread within a circle itself may serve as a tool for individuals with autism to learn social skills by allowing them to passively observe how people initiate a discussion topic and respond to others.
The analysis of the GroupMe field deployment study showed that the circles of communication helped participants overcome their over-reliance on their primary caregivers by increasing social closeness to others. However, engaging in conversation in a unified circle with a small set of members has a limitation. Drawing on this finding, we discuss design opportunities for building features that facilitate the formation of circles based on the topics a user want to receive advice, make circle membership transparent, and control the fine-grained communication along with the network member’s availability, tailored to support independent living of people affected by their cognitive disabilities.
We expand our research scope to explore developing a robust network of people whom the user is not likely to know but who nonetheless may be willing to commit small amounts of time to support people with special needs. We wish to investigate the potential for and the challenges of harnessing crowd-sourced volunteers that provide daily support or social advice to individuals with autism.
For more, see our full paper, Investigating the Use of Circles in Social Networks to Support Independence of Individuals with Autism.