The role of online groups for autistic people in users’ autism information journeys

Purpose

The numbers of people with both diagnosed and suspected autism have risen exponentially worldwide over the last few decades. Autistic individuals face significant health and social disparities, including higher rates of poor health, early mortality, and limited access to essential services. Understanding autistic people's information needs and information journeys is therefore crucial.

Methodology

The research was qualitative and consisted of two consecutive studies. First, a sample of posts from an online autism group, made by group users who described themselves as autistic, was generated and analysed using Reflexive Thematic Analysis. Fifteen semi-structured interviews were then undertaken with adults who used online groups for autistic people and stated that they had received a professional diagnosis of autism or were awaiting an autism assessment. Interview transcripts were analysed using thematic analysis.

Findings

The results identified some distinctive information behaviours connected to autism. A descriptive model was developed to represent the information journeys of people with autism. The model shows how people who have been diagnosed with autism, or who are awaiting professional assessment, seek and encounter online information about autism, and the role of online groups for autistic people within users’ information journeys.

Originality

This research is the first attempt within the literature to describe and model the information journeys of people who are autistic, or likely to be autistic, and who use online groups to find and share information. This is also the first study focusing specifically on the information behaviours of autistic adults.