It Is Literally Saving Me Spoons: Autistic People’s Experiences of Eating and Feeding Disorders—A Photovoice Study

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

About the autistic author marker

Metadata sources used for this reference

OpenAlex Crossref
Learn more about the sources used

Buchan, K., Maloney, E., Duffy, F., Sader, M., Nimbley, E., Kettley, S., Sharpe, H., & Gillespie-Smith, K. (2026). It Is Literally Saving Me Spoons: Autistic People’s Experiences of Eating and Feeding Disorders—A Photovoice Study. Autism in Adulthood. https://doi.org/10.1177/25739581261482021

Publication date: 3 Sep 2026 Added to AutiHub: 5 Sep 2026 Type: Article Article language: English
Publisher source (DOI) OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
8
Publication authors identified as autistic
1 / 8 (12.5%)
  1. Kyle Buchan
  2. Ellen Maloney *
  3. Fiona Duffy
  4. Michelle Sader
  1. Emy Nimbley
  2. Sarah Kettley
  3. Helen Sharpe
  4. Karri Gillespie-Smith

Abstract

Background: Despite the high prevalence of eating disorders (EDs) in Autistic people, few qualitative studies explore this overlap beyond Autistic women with anorexia nervosa (AN). Methods: We used Photovoice to explore the experiences of Autistic people with EDs across diverse genders and ED typologies. Our final sample included 14 Autistic individuals (male n = 3, female n = 8, gender-queer n = 3; m = 31.07 years). Participants completed five workshops across four groups (n = 20 group sessions), capturing images that best represented their ED experiences and discussing them with their group. We conducted content analysis on the images and inductive-reflexive thematic analysis on the workshop transcripts, Microsoft Teams messages, and image narratives. Results: Our analysis produced five key themes: (1) Autistic identity: how autism diagnoses shape ED experiences and perceptions of normality; (2) the “overwhelm bucket”: how cognitive and sensory overload trigger ED behaviors; (3) diagnostic intersectionality: how traits interact across Autism, EDs, and co-occurring diagnoses, complicating clinical separation; (4) “go without me” (social consequences): how ED-driven social withdrawal conflicts with a desire for reconnection; and (5) services and support: key barriers to accessing care, the necessity of autism-informed treatment, and the value of creative methods. Our findings align with existing Autistic-ED models while broadening representation to men, gender-diverse individuals, and people experiencing bulimia nervosa and binge eating disorder. Conclusion: Our findings challenge deficit-based views of Autistic sociality, underscore how identity, overwhelm, and intersectionality shape ED experiences, and demonstrate the urgent need for autism-informed, community-led care that rejects neuronormative assumptions.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 12 Sep 2026 17:55.

Cited references
54
With a DOI
47
Without a DOI, from raw bibliography text
7
5 / 54 (9.3%) cited references include at least one author identified as autistic.
References with data to complete
2 / 54 (3.7%)
References with detected author names
52 / 54 (96.3%)
Without detected author names
2
Without a structured title
2
Without a stable identifier
7
References with raw author names still to review
2
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
240
From DOI or external metadata
240
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
4
67 / 240 (27.9%) names are linked to an author already present in AutiHub. 173 / 240 (72.1%) names are not yet linked.
Names linked to a person identified as autistic
5 / 240 (2.1%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 5 / 67 (7.5%). Distinct people identified as autistic: 2 / 194 (1.0%).
  1. Liem T. Chistol , Linda G. Bandini , Aviva Must , Sarah Phillips , Sharon A. Cermak , Carol Curtin (2018). Sensory Sensitivity and Food Selectivity in Children with Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 48(2), 583-591. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3340-9 OpenAlex: https://openalex.org/W57008480
    Crossref OpenAlex
  2. González Moreno, Andrés Santiago (2013). Diagnostic and Statistical Manual of Mental Disorders . American Psychiatric Association.
    Type: Book DOI: 10.1176/appi.books.9780890425596 OpenAlex: https://openalex.org/W4247665917
    Crossref OpenAlex
  3. Ellen Kohl , Priscilla McCutcheon (2015). Kitchen table reflexivity: negotiating positionality through everyday talk . Gender, Place & Culture, 22(6), 747-763. Informa UK Limited.
    Type: Article DOI: 10.1080/0966369x.2014.958063 OpenAlex: https://openalex.org/W1986856511
    Crossref OpenAlex
  4. Martina Micai , Laura Maria Fatta , Letizia Gila , Angela Caruso , Tommaso Salvitti , Francesca Fulceri et al. (2023). Prevalence of co-occurring conditions in children and adults with autism spectrum disorder: A systematic review and meta-analysis . Neuroscience & Biobehavioral Reviews, 155, 105436. Elsevier BV.
    Type: Article DOI: 10.1016/j.neubiorev.2023.105436 OpenAlex: https://openalex.org/W4388078548
    Crossref OpenAlex
  5. Caroline Wang , Mary Ann Burris (1994). Empowerment through Photo Novella: Portraits of Participation . Health Education Quarterly, 21(2), 171-186. SAGE Publications.
    Type: Article DOI: 10.1177/109019819402100204 OpenAlex: https://openalex.org/W2066766963
    Crossref OpenAlex
  6. Kathrin Nickel , Simon Maier , Dominique Endres , Andreas Joos , Viktoria Maier , Ludger Tebartz van Elst et al. (2019). Systematic Review: Overlap Between Eating, Autism Spectrum, and Attention-Deficit/Hyperactivity Disorder . Frontiers in Psychiatry, 10, 708-708. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyt.2019.00708 OpenAlex: https://openalex.org/W2971955558
    Crossref OpenAlex
  7. Carrie Allison , Bonnie Auyeung , Simon Baron-Cohen (2012). Toward Brief “Red Flags” for Autism Screening: The Short Autism Spectrum Quotient and the Short Quantitative Checklist in 1,000 Cases and 3,000 Controls . Journal of the American Academy of Child & Adolescent Psychiatry, 51(2), 202-212.e7. Elsevier BV.
    Type: Article DOI: 10.1016/j.jaac.2011.11.003 OpenAlex: https://openalex.org/W2100429511
    Crossref OpenAlex
  8. Felicity Sedgewick , Jenni Leppanen , Amelia Austin , Kate Tchanturia (2022). Different pathways, same goals: A large‐scale qualitative study of autistic and non‐autistic patient‐generated definitions of recovery from an eating disorder . European Eating Disorders Review, 30(5), 580-591. Wiley.
    Type: Article DOI: 10.1002/erv.2873 OpenAlex: https://openalex.org/W3215668402
    Crossref OpenAlex
  9. Caroline Wang , Mary Ann Burris (1997). Photovoice: Concept, Methodology, and Use for Participatory Needs Assessment . Health Education & Behavior, 24(3), 369-387. SAGE Publications.
    Type: Article DOI: 10.1177/109019819702400309 OpenAlex: https://openalex.org/W2122164040
    Crossref OpenAlex
  10. Ruyue Zhang , Andreas Birgegård , Bengt Fundín , Mikael Landén , Laura M. Thornton , Cynthia M. Bulik et al. (2022). Association of autism diagnosis and polygenic scores with eating disorder severity . European Eating Disorders Review, 30(5), 442-458. Wiley.
    Type: Article DOI: 10.1002/erv.2941 OpenAlex: https://openalex.org/W4286215632
    Crossref OpenAlex
  11. J O Renty , Herbert Roeyers (2006). Quality of life in high-functioning adults with autism spectrum disorder . Autism, 10(5), 511-524. SAGE Publications.
    Type: Article DOI: 10.1177/1362361306066604 OpenAlex: https://openalex.org/W2126485481
    Crossref OpenAlex
  13. Janette Dinishak (2016). The Deficit View and Its Critics . Disability Studies Quarterly, 36(4). The Ohio State University Libraries.
    Type: Article DOI: 10.18061/dsq.v36i4.5236 OpenAlex: https://openalex.org/W2559516930
    Crossref OpenAlex
  14. Kiera Louise Adams , Will Mandy , Caroline Catmur , Geoffrey Bird (2024). Potential mechanisms underlying the association between feeding and eating disorders and autism . Neuroscience & Biobehavioral Reviews, 162, 105717. Elsevier BV.
    Type: Article DOI: 10.1016/j.neubiorev.2024.105717 OpenAlex: https://openalex.org/W4396936404
    Crossref OpenAlex
  15. Emma Kinnaird , Caroline Norton , Kate Tchanturia (2017). Clinicians’ views on working with anorexia nervosa and autism spectrum disorder comorbidity: a qualitative study . BMC Psychiatry, 17(1), 292-292. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s12888-017-1455-3 OpenAlex: https://openalex.org/W2743912480
    Crossref OpenAlex
  16. L. Dell'Osso , B. Carpita , C. Gesi , I.M. Cremone , M. Corsi , E. Massimetti et al. (2018). Subthreshold autism spectrum disorder in patients with eating disorders . Comprehensive Psychiatry, 81, 66-72. Elsevier BV.
    Type: Article DOI: 10.1016/j.comppsych.2017.11.007 OpenAlex: https://openalex.org/W2770347994
    Crossref OpenAlex
  18. Hana F. Zickgraf , Jordan M. Ellis (2018). Initial validation of the Nine Item Avoidant/Restrictive Food Intake disorder screen (NIAS): A measure of three restrictive eating patterns . Appetite, 123, 32-42. Elsevier BV.
    Type: Article DOI: 10.1016/j.appet.2017.11.111 OpenAlex: https://openalex.org/W2774111579
    Crossref OpenAlex
  20. Rachel Bryant‐Waugh , Nadia Micali , Lucy Cooke , Elizabeth A. Lawson , Kamryn T. Eddy , Jennifer J. Thomas (2019). Development of the Pica, ARFID, and Rumination Disorder Interview, a multi‐informant, semi‐structured interview of feeding disorders across the lifespan: A pilot study for ages 10–22 . International Journal of Eating Disorders, 52(4), 378-387. Wiley.
    Type: Article DOI: 10.1002/eat.22958 OpenAlex: https://openalex.org/W2896548894
    Crossref OpenAlex
  22. Louise Camm-Crosbie , Louise Bradley , Rebecca Shaw , Simon Baron-Cohen , Sarah Cassidy (2019). ‘People like me don’t get support’: Autistic adults’ experiences of support and treatment for mental health difficulties, self-injury and suicidality . Autism, 23(6), 1431-1441. SAGE Publications.
    Type: Article DOI: 10.1177/1362361318816053 OpenAlex: https://openalex.org/W2902777586
    Crossref OpenAlex
  23. Janina Brede , Charli Babb , Catherine Jones , Mair Elliott , Cathy Zanker , Kate Tchanturia et al. (2020). “For Me, the Anorexia is Just a Symptom, and the Cause is the Autism”: Investigating Restrictive Eating Disorders in Autistic Women . Journal of Autism and Developmental Disorders, 50(12), 4280-4296. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-020-04479-3 OpenAlex: https://openalex.org/W3013495962
    Crossref OpenAlex
  24. Emma Kinnaird , Caroline Norton , Catherine Stewart , Kate Tchanturia (2019). Same behaviours, different reasons: what do patients with co-occurring anorexia and autism want from treatment? International Review of Psychiatry, 31(4), 308-317. Informa UK Limited.
    Type: Article DOI: 10.1080/09540261.2018.1531831 OpenAlex: https://openalex.org/W2919305369
    Crossref OpenAlex
  25. Charli Babb , Janina Brede , Catherine R G Jones , Mair Elliott , Cathy Zanker , Kate Tchanturia et al. (2021). ‘It’s not that they don’t want to access the support... it’s the impact of the autism’: The experience of eating disorder services from the perspective of autistic women, parents and healthcare professionals . Autism, 25(5), 1409-1421. SAGE Publications.
    Type: Article DOI: 10.1177/1362361321991257 OpenAlex: https://openalex.org/W3133083399
    Crossref OpenAlex
  26. Virginia Braun , Victoria Clarke (2021). To saturate or not to saturate? Questioning data saturation as a useful concept for thematic analysis and sample-size rationales . Qualitative Research in Sport, Exercise and Health, 13(2), 201-216. Informa UK Limited.
    Type: Article DOI: 10.1080/2159676x.2019.1704846 OpenAlex: https://openalex.org/W2996597775
    Crossref OpenAlex
  27. Michelle Sader , Annabel Weston , Kyle Buchan , Jess Kerr‐Gaffney , Karri Gillespie-Smith , Helen Sharpe et al. (2025). The Co‐Occurrence of Autism and Avoidant/Restrictive Food Intake Disorder (ARFID ): A Prevalence‐Based Meta‐Analysis . International Journal of Eating Disorders, 58(3), 473-488. Wiley.
    Type: Article DOI: 10.1002/eat.24369 OpenAlex: https://openalex.org/W4406102841
    Crossref OpenAlex
  28. Hana F. Zickgraf , Emily Richard , Nancy L. Zucker , Gregory L. Wallace (2022). Rigidity and Sensory Sensitivity: Independent Contributions to Selective Eating in Children, Adolescents, and Young Adults . Journal of Clinical Child & Adolescent Psychology, 51(5), 675-687. Informa UK Limited.
    Type: Article DOI: 10.1080/15374416.2020.1738236 OpenAlex: https://openalex.org/W3011027090
    Crossref OpenAlex
  29. Iwasaki A (2013). Autistic ten dencies in women with eating disorders . Journal of the Medical Society of Toho University, 60(5), 249.
    Type: Other
    Crossref
  30. Heather J. Williamson , Lieke van Heumen , Ariel E. Schwartz (2020). Photovoice with Individuals with Intellectual and/or Developmental Disabilities: Lessons Learned from Inclusive Research Efforts . Collaborations: A Journal of Community-Based Research and Practice, 3(1). University of Miami.
    Type: Article DOI: 10.33596/coll.45 OpenAlex: https://openalex.org/W3016604812
    Crossref OpenAlex
  31. Qingchun Wang , Karin Hannes (2020). Toward a More Comprehensive Type of Analysis in Photovoice Research: The Development and Illustration of Supportive Question Matrices for Research Teams . International Journal of Qualitative Methods, 19. SAGE Publications.
    Type: Article DOI: 10.1177/1609406920914712 OpenAlex: https://openalex.org/W3016623467
    Crossref OpenAlex
  32. Jess Kerr‐Gaffney , Daniel Halls , Amy Harrison , Kate Tchanturia (2020). Exploring Relationships Between Autism Spectrum Disorder Symptoms and Eating Disorder Symptoms in Adults With Anorexia Nervosa: A Network Approach . Frontiers in Psychiatry, 11, 401. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyt.2020.00401 OpenAlex: https://openalex.org/W3025256254
    Crossref OpenAlex
  33. Kate Tchanturia , Katherine Smith , Danielle Glennon , Anna Burhouse (2020). Towards an Improved Understanding of the Anorexia Nervosa and Autism Spectrum Comorbidity: PEACE Pathway Implementation . Frontiers in Psychiatry, 11, 640-640. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyt.2020.00640 OpenAlex: https://openalex.org/W3040908304
    Crossref OpenAlex
  34. Velea S (2017). A guide to facilitate PhotoVoice Projects . A guide to facilitate PhotoVoice Projects.
    Type: Other
    Crossref
  35. Kate Tchanturia , Yasemin Dandil , Zhuo Li , Katherine Smith , Monica Leslie , Sarah Byford (2021). A novel approach for autism spectrum condition patients with eating disorders: Analysis of treatment cost‐savings . European Eating Disorders Review, 29(3), 514-518. Wiley.
    Type: Article DOI: 10.1002/erv.2760 OpenAlex: https://openalex.org/W3041848458
    Crossref OpenAlex
  36. Phuong L. Do , Patsie Frawley , Sophie Goldingay , Amie O'Shea (2021). The Use of Photovoice in Research With People on the Autism Spectrum: A Meta-Synthesis of the Literature . Research in Autism Spectrum Disorders, 87, 101828. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2021.101828 OpenAlex: https://openalex.org/W3178771683
    Crossref OpenAlex
  37. Emma Kinnaird , Kate Tchanturia (2021). Looking beneath the surface: Distinguishing between common features in autism and anorexia nervosa . Journal of Behavioral and Cognitive Therapy, 31(1), 3-13. Elsevier BV.
    Type: Article DOI: 10.1016/j.jbct.2020.09.001 OpenAlex: https://openalex.org/W3089869938
    Crossref OpenAlex
  38. Lucía I. Floríndez , Daniella C. Floríndez , Mia E. Price , Francesca M. Floríndez , Dominique H. Como , Jose C. Polido et al. (2021). Exploring Eating Challenges and Food Selectivity for Latinx Children with and without Autism Spectrum Disorder Using Qualitative Visual Methodology: Implications for Oral Health . International Journal of Environmental Research and Public Health, 18(7), 3751. MDPI AG.
    Type: Article DOI: 10.3390/ijerph18073751 OpenAlex: https://openalex.org/W3149716667
    Crossref OpenAlex
  39. Zoe Lindsay Connor , Kathleen Hennessy-Priest , Rosie Kneafsey , Deborah Lycett (2023). Let down by Low Expectations: A Qualitative Interview/participatory Photography Study of Feeding Problems in Autistic Children . Journal of Occupational Therapy, Schools, & Early Intervention, 16(3), 262-280. Informa UK Limited.
    Type: Article DOI: 10.1080/19411243.2022.2054485 OpenAlex: https://openalex.org/W4293102194
    Crossref OpenAlex
  40. Helen Burton Murray , Melissa J. Dreier , Hana F. Zickgraf , Kendra R. Becker , Lauren Breithaupt , Kamryn T. Eddy et al. (2021). Validation of the nine item ARFID screen (NIAS ) subscales for distinguishing ARFID presentations and screening for ARFID . International Journal of Eating Disorders, 54(10), 1782-1792. Wiley.
    Type: Article DOI: 10.1002/eat.23520 OpenAlex: https://openalex.org/W3153652724
    Crossref OpenAlex
  41. (n.d.). 26. Gillespie-Smith K Buchan K Duffy F et al. Eating disorder and autism collaborative (EDAC): A protocol for a photovoice study exploring the lived experience and setting research priorities in eating disorders in Autistic groups and groups who have Intellectual Disabilities with eating disorders. 2024. Open Science Framework. https://osf.io/8pcsm
    Type: Other
    Crossref
  42. Marthe M. Voswinkel , Cleo Rijkers , Johannes J. M. van Delden , Annemarie A. van Elburg (2021). Externalizing your eating disorder: a qualitative interview study . Journal of Eating Disorders, 9(1), 128-128. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s40337-021-00486-6 OpenAlex: https://openalex.org/W3162787799
    Crossref OpenAlex
  43. Eric Stice , Christy F. Telch , Shireen L. Rizvi (2011). Eating Disorder Diagnostic Scale . PsycTESTS Dataset. American Psychological Association (APA).
    Type: Dataset DOI: 10.1037/t01067-000 OpenAlex: https://openalex.org/W4256234634
    Crossref OpenAlex
  44. Phaedra Longhurst , Lilli Clark (2022). Integrating the Autistic Experience Into Existing Models for Disordered Eating . Frontiers in Psychology, 13, 926415-926415. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyg.2022.926415 OpenAlex: https://openalex.org/W4283271390
    Crossref OpenAlex
  45. Virginia Braun , Victoria Clarke , Nikki Hayfield , Louise Davey , Elizabeth Jenkinson (2022). Doing Reflexive Thematic Analysis . In Supporting Research in Counselling and Psychotherapy (pp. 19-38). Springer International Publishing.
    Type: Book chapter DOI: 10.1007/978-3-031-13942-0_2 OpenAlex: https://openalex.org/W4317823576
    Crossref OpenAlex
  46. Harding SG (1991). Whose Science? Whose Knowledge?: Thinking from Women’s Lives . Whose Science? Whose Knowledge?: Thinking from Women’s Lives.
    Type: Other
    Crossref
  47. Laura Grennan , Maria Nicula , Danielle Pellegrini , Kelly Giuliani , Erica Crews , Cheryl Webb et al. (2022). “I’m not alone”: a qualitative report of experiences among parents of children with eating disorders attending virtual parent-led peer support groups . Journal of Eating Disorders, 10(1), 195-195. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s40337-022-00719-2 OpenAlex: https://openalex.org/W4311547773
    Crossref OpenAlex
  48. Hollway W (2016). Emotional experience plus reflection: Countertransference and reflexivity in research . The Psychotherapist, 62.
    Type: Other
    Crossref
  49. Sarah L. Field , John R. E. Fox , Catherine R. G. Jones , Marc O. Williams (2023). “Work WITH us”: a Delphi study about improving eating disorder treatment for autistic women with anorexia nervosa . Journal of Eating Disorders, 11(1), 17. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s40337-023-00740-z OpenAlex: https://openalex.org/W4319753765
    Crossref OpenAlex
  50. Madeline Hunsicker , Elana Maloul , Greene Amanda K. , Dani Gilady , Lisa M. Brownstone (2024). Filling a gap: virtual clinician-led support groups for disordered eating . Counselling Psychology Quarterly, 37(1), 155-171. Informa UK Limited.
    Type: Article DOI: 10.1080/09515070.2023.2192461 OpenAlex: https://openalex.org/W4360992794
    Crossref OpenAlex
  52. (n.d.). 40. Miserandino C. The Spoon Theory. But you don’t look sick; 2003. https://lymphoma-action.org.uk/sites/default/files/media/documents/2020-05/Spoon%20theory%20by%20Christine%20Miserandino.pdf
    Type: Other
    Crossref
  53. Cobbaert L (2023). Eating disorders and neurodivergence: A stepped care approach . Eating Disorders Neurodiversity Australia.
    Type: Other
    Crossref
  54. Claire M. Brown , Darren Hedley , Merrilyn Hooley , Susan M Hayward , Matthew Fuller-Tyszkiewicz , Isabel Krug et al. (2026). Hiding in Plain Sight: Eating Disorders, Autism, and Diagnostic Overshadowing in Women . Autism in Adulthood, 8(3), 410-422. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2023.0197 OpenAlex: https://openalex.org/W4402901739
    Crossref OpenAlex