The role of informational support in online groups for people on the autism spectrum

Background and aims:
Over the past twenty years, there has been an exponential increase in the numbers of people believed to be on the autism spectrum, both diagnosed and undiagnosed. People on the autism spectrum are known to be a vulnerable group who experience marked health and social inequalities, and the need for more effective support is widely recognised. This research aimed to investigate informational support within online groups for people on the autism spectrum in the UK.

Methods:
The research consisted of two qualitative studies, firstly, a thematic analysis of posts to an online group for people on the autism spectrum, and secondly, semi-structured interviews with fifteen people who identified as being autistic, and had used online groups for autistic people, which were also analysed thematically.

Results:
Thematic analysis of the online group posts and semi-structured interviews with online group users resulted in five overarching themes: the world is a hostile information environment for autistic people; making sense of autism; distinctive autistic information needs and information behaviours; online groups are a valuable autistic resource; and balancing the benefits of online groups with risks and downsides. These results were used to develop a model of the participants’ autism information journeys.

Conclusions:
Informational support plays an important role within online groups for autistic people. The online groups provide information, in addition to emotional and social network support, that some users cannot find or access elsewhere. In particular, the informational support found and shared within the online groups forms an important part of some users’ autism information journeys. Informational support helps group users to make sense of autism and life experiences, and to share strategies and advice for coping with life difficulties. However, online groups do not replace the need for specialised professional support and information.