"It's not about wanting to be thin or look small, it's about the way it feels": an IPA analysis of social and sensory differences in autistic and non-autistic individuals with anorexia and their parents

Emy Nimbley; Karri Gillespie-Smith; Fiona Duffy; Ellen Maloney; Carrie Ballantyne; Helen Sharpe

doi:10.1186/s40337-023-00813-z

"It's not about wanting to be thin or look small, it's about the way it feels": an IPA analysis of social and sensory differences in autistic and non-autistic individuals with anorexia and their parents

J Eat Disord. 2023 Jun 5;11(1):89. doi: 10.1186/s40337-023-00813-z.

Authors

Emy Nimbley¹, Karri Gillespie-Smith², Fiona Duffy^{2

3}, Ellen Maloney⁴, Carrie Ballantyne⁵, Helen Sharpe²

Affiliations

¹ Department of Clinical Psychology in the School of Health in Social Science, University of Edinburgh, Old Medical School, Elsie Inglis Quadrangle, Teviot Place, Edinburgh, EH8 9AG, Scotland, UK. emy.nimbley@ed.ac.uk.
² Department of Clinical Psychology in the School of Health in Social Science, University of Edinburgh, Old Medical School, Elsie Inglis Quadrangle, Teviot Place, Edinburgh, EH8 9AG, Scotland, UK.
³ NHS Lothian Child and Adolescent Mental Health Services, Royal Edinburgh Hospital, Edinburgh, Scotland, UK.
⁴ School of Philosophy, Psychology and Language, University of Edinburgh, Edinburgh, Scotland, UK.
⁵ School of Education and Social Sciences, University of the West of Scotland, Glasgow, UK.

Abstract

Background: Despite increasing evidence to support an overlap between autism and anorexia nervosa (AN), underlying mechanisms remain poorly understood. Social and sensory factors have emerged as promising targets in both autism and AN, however there remains scope to compare these differences across autistic and non-autistic experiences of AN. Drawing on dyadic multi-perspectives, this study explored experiences of social and sensory differences in autistic and non-autistic adults and their parents and/or carers.

Methods: Using interpretative phenomenological analysis (IPA), dyadic interviews were conducted with 14 dyads, with seven autistic dyads and seven non-autistic dyads. Data analysis was subjected to a triangulation of interpretations: (1) the participants themselves; (2) a neurotypical researcher; (3) and an Autistic researcher with lived/living experience of AN.

Results: IPA identified three themes in each group, with similarities and differences between autistic and non-autistic dyads. Similar themes were identified regarding the importance of social connectedness and socio-emotional difficulties, as well a common lack of trust in the social and sensory self and body. Autism-specific themes centred on feelings of social 'defectiveness', disparities between sensing and expressing certain cues, and lifelong, multi-sensory processing differences. Non-autistic themes reflected social comparisons and inadequacy, and sensitivities to the learning of ideals and behaviour through early experiences.

Conclusions: While similarities were observed across both groups, there appeared to be notable differences in the perceived role and influence of social and sensory differences. These findings may have important implications on the delivery and modification of eating disorder interventions. Specifically, they suggest that while treatment targets may look similar, subtle differences in underlying mechanisms and approaches may be required for Autistic individuals with AN across sensory, emotion and communication-based interventions.

Keywords: Autism; IPA; Parents; Sensory; Social; anorexia nervosa.