At EDAC we are committed to making research accessible. Our Plain Speaking Summaries include plain language text on published papers and an interview with the authors. In this Plain Speaking Summary Dr Emy Nimbley introduced her paper that was published in 2023 and is interviewed by an Ellen Maloney, EDAC peer researcher.
Paper Synopsis
The full paper can be found here.
AIMS:
A lot of research has focused on establishing an overlap between autism and eating disorders, particularly anorexia, however not a lot of research has focused on understanding why there is an overlap. Early work has pointed towards a range of factors that may help explain why Autistic people develop anorexia nervosa (AN), including emotion factors, social difficulties and sensory differences. Building on this, the current study looked to explore social and sensory factors in Autistic and non-Autistic adults with AN by understanding how these factors are experienced and felt to be linked with their eating disorder.
KEY FINDINGS:
While there were some similarities between Autistic and non-Autistic groups, there were notable differences in experience of social and sensory factors. For example, while both groups felt that their sense of self was linked with social factors, Autistic people felt this stemmed from feeling ‘defective’, while non-Autistic people linked this more with social comparisons and inadequacy. Sensory processing was felt to be a core and lifelong difficulty in Autistic people, and strongly linked with their experience of developing their eating disorder, while for non-Autistic people this was felt to be more of a consequence of their eating disorder.
METHOD:
Adults with anorexia and their parents were interviewed online at the same time. This was because the study wanted to draw on multiple perspectives, and by drawing on these at the same time, participants could share and make sense of their experiences together. We also wanted to have a developmental perspective, discussing social and sensory factors from childhood, adolescence and into adulthood.
Once the interviews were over, we analysed the data using Interpretative Phenomenological Analysis (IPA), which is a method used to make sense of the interview data. IPA focuses on trying to understand and interpret the meaning in people’s experiences, as opposed to just reporting on what has happened. This approach involves going through the interview data over and over again, working up from making notes and themes in each interview to create themes that are shared across groups. An Autistic peer research with lived/living experience of anorexia was involved in the development of these themes, allowing both a neurotypical and Autistic researcher to be involved in making sense of neurotypical and Autistic experiences.
RESULTS:
A shared theme between Autistic and non-Autistic groups was the Social Self, where a sense of self was closely linked with social factors, such as feeling connected or rejected by others. However, importantly, this theme was experienced differently by Autistic and non-Autistic people. Autistic people felt different to others and had felt this way for such a long time that this had become internalized as being ‘defective’ or wrong. Non-Autistic participants discussed feeling inadequate when comparing themselves to others, like they weren’t doing or achieving enough. Similarly, while both groups talked about the need to feel accepted and connected with others, this was again experienced differently; connection often came with shared interests and similar ‘wiring’ in Autistic participants, while for non-Autistic participants, this came from feeling liked and appreciated by others.
Sensory factors were felt to be a core factor of their life and their eating disorder in Autistic people. This could be sensitivities to certain tastes, smells or textures, as well as difficulties identifying internal body sensations such as hunger, fullness and temperature. Importantly, sensory factors were felt to influence not only their eating disorder, but also were felt to influence social and emotional factors. For example, the sense of confusion linked with being unable to identify or understand internal body sensations was experienced similarly to being unable to identify or understand emotions in themselves or in others. Non-Autistic participants also discussed taste and smell sensitivities, as well as difficulties with feeling hungry or full, but this was felt to be caused by the eating disorder and often passed during recovery.
IMPACT:
It is hoped that the results from this study will positively impact the autism and eating disorder community in a number of ways. The methods used focused on experiences, as well as including an Autistic peer researcher with lived/living experience of AN in making sense of these experiences. It is hoped that the study findings are closely aligned with the experiences of the autism and AN community and highlights areas where we can start to make meaningful change. For example, clinical and community ED services should be made more aware of possible sensory differences and make changes in their environments and treatment plans. Additionally, those working in ED support services should also be aware of social differences, such as differences in social communication and interaction, and how closely these may be linked with emotions.
The study also identifies several areas of that future research could follow up on. It would be interesting to know how these socio-emotional and sensory factors are experienced in more diverse Autistic groups, such as non-speaking Autistic adults or those within the LGBTQ+ community. It would also be interesting to understand social connectedness from a strengths-based approach in Autistic people with eating disorders, exploring how this can be experienced and what can be done to improve this. Finally, it would be interesting to focus more on emotions and how these interact with other factors in Autistic and non-Autistic groups with eating disorders. This could be done using both quantitative (numbers, surveys and questionnaires) and qualitative (interviews, experiences) data collected at the same time. This could allow us to identify certain profiles or ‘subgroups’ of eating disorder, perhaps helping us to discriminate between Autistic and non-Autistic presentations, while being contextualised within the experiences of the autism and eating disorder community.
DISSEMINATION:
This study was published in the Journal of Eating Disorders and can be read here. The study is open access so is available for anyone to read!
Findings from the study have also been shared at conferences, such as at the International Conference of Eating Disorders 2023 in Washington DC, and will be discussed at a number of knowledge exchange events run with local autism and eating disorder support services in Scotland.
SUMMARY:
By drawing on multiple perspectives and lived/living experiences, this study looked to provide in-depth understandings of how social and sensory factors are experienced by Autistic and non-Autistic adults with anorexia. Several important findings were identified following the analyses of interviews by both a neurotypical and an Autistic researcher. While both Autistic and non-Autistic groups felt social factors were closely linked to their sense of self, this was experienced very differently. Sensory factors were a lifelong and core feature of Autistic experiences, linked both to their eating disorder and to their social and emotional experiences. Moving forward, more research should be done to understand these experiences and outcomes, and to translate this research into improving the care and quality of life in Autistic people with an eating disorder.
