Development of a Conceptual Model of Loneliness in Verbal Autistic Adults Using Qualitative Content Analyses

Loneliness has serious consequences for physical and mental health. Therefore, the high vulnerability of autistic adults to loneliness is concerning (Hymas et al., in: Rev J Autism Dev Disord., 2022. https://doi.org/10.1007/s40489-022-00330-w ). However, foundational questions regarding the operationalization and importance of loneliness to the autistic community remain largely unanswered, and thus were the aims of the current study.

Procedures followed initial steps of the PROMIS (Patient-Reported Outcomes Measurement Information System) guidelines. A preliminary conceptual model of loneliness was developed based on literature in the general population and presented to focus groups and individual interviews involving 13 autistic adults and 5 autism professionals. Transcripts were analyzed using qualitative content analysis.

Participants indicated that research on loneliness in autistic adults was worthwhile because of the commonality, significant negative impact, need to challenge misconceptions, and identify prevention/intervention strategies. Revisions to an initially proposed conceptual model of loneliness in autism included clarifications (e.g., satisfaction with vs. presence of relationships), modifications (e.g., frequency vs. availability of contact), and additions (e.g., social exhaustion, feelings of difference, and animals).

Our proposed conceptual model of loneliness in autism identifies key nuances and concepts overlooked by models and measures of loneliness developed for non-autistic populations. These findings underscore the need to improve methods for assessing loneliness among autistic adults.