Measuring Loneliness in Autistic Adults: A Collaborative Approach to Refining the UCLA Loneliness Scale

Authors

Abstract

Background: Loneliness is a significant yet under-investigated health risk for Autistic individuals. It is important that loneliness measures are valid for use among both Autistic and non-autistic adults. This study aimed to (1) adapt the UCLA Loneliness Scale for Autistic adults, (2) provide evidence based on test content for the adapted scale, (3) provide psychometric evidence using an international sample, (4) investigate differential item functioning (DIF) between Autistic and non-autistic adults, and (5) assess convergent and discriminant evidence with other loneliness and well-being variables. Methods: To build evidence for test content, we thoroughly examined the UCLA Loneliness Scale items in partnership with Autistic individuals. As the scale was already designed for non-autistic people, we made adaptations to ensure there was evidence for use with Autistic people. This process included cognitive interviews ( n = 10) and expert reviews ( n = 13). Following the adaptation phase, we gathered data ( N = 628) to demonstrate a degree of psychometric evidence using item response theory to assess psychometric properties, including autistic-based DIF. We used latent variable modeling to assess convergent and discriminant evidence. Results: The UCLA Loneliness Scale—Modified (UCLA-m) resulted from the adaptation phase and was used to survey 628 adults. We found UCLA-m has sufficient evidence for being essentially unidimensional, with total scores demonstrating preliminary evidence of high reliability, internal validity, and convergent evidence. Autistic adults in our study reported higher levels of loneliness, social anxiety, and depression compared with non-autistic adults. Conclusion: The evidence from this study serves as a precursor for studying loneliness in Autistic adults and provides evidence about the validity of a measurement tool that will enable further research into better supporting Autistic adults who are experiencing loneliness. Additionally, many of the adaptations made during this process will increase the overall accessibility of the UCLA-m for all individuals, not just Autistic adults.

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