We evaluated whether Asynchronous Online Focus Groups (AOFGs) (Medley-Rath 2019) are an effective method for collecting data for autism research, and if they are deemed acceptable by a diverse range of stakeholders. Participants (n = 147) were autistic youth, their mothers, or professionals working with autistic clientele who were assigned to one of 27 Focus Groups (FG) with members of the same stakeholder group. FG were conducted on private Facebook groups through written exchanges. Research assistants posed an open-ended question daily for 10 days. Participants answered the initial question when convenient, and often exchanged with other participants. The FG exchanges generated a significant amount of high caliber qualitative data, on average 60 pages of verbatim per group. Participants indicated that they greatly appreciated their experience and found AOFG to be well-adapted to their needs in format and modality. According to many autistic participants, reading about the experiences of others made them “feel less alone” and gave them the impression that they were able to “better understand themselves and others.” Mothers also noted that their participation had positive effects, allowing them to exchange advice and feel that their experiences were shared by others. AOFGs are well-suited for data collection in autism research.
