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Using Photovoice Methods to Set Research Priorities With Autistic People With Experience of an Eating Disorder
Emy Nimbley1,2, Kyle Buchan1,2, Ellen Maloney1,2
1School of Health in Social Science, University of Edinburgh, Scotland, Edinburgh, UK.
Journal of Clinical Psychology
|May 3, 2025
Summary
Autistic individuals with eating disorders (EDs) need research that centers their lived experiences. This study identified key priorities, including understanding EDs
Area of Science:
- Autism Spectrum Disorder and Eating Disorders
- Neurodevelopmental Disorders and Mental Health
- Arts-Based Research Methodologies
Background:
- Autism and autistic traits are frequently observed in individuals with eating disorders (EDs).
- Autistic individuals often experience poorer outcomes and dissatisfaction with ED treatment.
- Lived experience perspectives are crucial but often excluded from research agenda setting in this field.
Purpose of the Study:
- To identify research priorities for Autistic individuals experiencing eating disorders (EDs).
- To utilize accessible and inclusive arts-based research methodologies to capture lived experiences.
- To address the under-researched mechanisms of the autism-ED overlap.
Main Methods:
- Employed Photovoice, a creative methodology involving image creation and discussion.
- Conducted group workshops with 14 participants to explore research priorities.
- Analyzed images and transcripts using an adapted Photovoice Question Matrix and thematic analysis.
- Incorporated participant feedback to finalize emergent themes.
Main Results:
- Identified five key research priority themes: Impact of early experiences, Function of the ED, Barriers and facilitators to ED recovery, Understanding and accommodating complexity, and Changing research culture.
- Subthemes revealed the internalization of socio-cultural narratives, EDs as regulatory/social strategies, autistic traits as both barriers and facilitators, co-occurring conditions, intersectionality, and the need for inclusive research and nonclinical support.
- Highlighted the importance of understanding generational cycles and the complex nature of unraveling EDs.
Conclusions:
- Findings provide community-driven research priorities for Autistic individuals with EDs.
- Recommendations are made for future research, emphasizing novel, interdisciplinary, and co-produced studies.
- Aims to create a meaningful evidence base to improve outcomes for Autistic individuals with EDs.
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