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.

Design/methodology/approach

The research consisted of two consecutive qualitative 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 by the participants to autism. A descriptive model was developed to represent the information journeys of people who use online groups for autistic people and are autistic or believe that they might be. 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/value

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 use online groups to find and share information. This is also the first study focussing specifically on the information behaviours of autistic adults.