“There’s no one-size-fits-all kind of solution”: An interpretative phenomenological analysis of the experiences of autistic individuals living with Ehlers-Danlos syndrome

This publication is included in the Autistic Autism Scholarship Project. two authors of this publication are identified as autistic in the project.

About the autistic author marker

Metadata sources used for this reference

OpenAlex Crossref PubMed BibTeX OpenCitations
Learn more about the sources used

Beckwith, R. & Stephens-Lewis, D. (2025). “There’s no one-size-fits-all kind of solution”: An interpretative phenomenological analysis of the experiences of autistic individuals living with Ehlers-Danlos syndrome. Research in Developmental Disabilities, 164, 105084. https://doi.org/10.1016/j.ridd.2025.105084

Publication date: 6 Aug 2025 Added to AutiHub: 17 Sep 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
2
Publication authors identified as autistic
2 / 2 (100.0%)
  1. Rhoslyn Beckwith *
  2. Danielle Stephens-Lewis *

Abstract

OBJECTIVE: Approximately a third of individuals live with multiple health conditions and this number is rising. Research suggests that living with a chronic condition can profoundly impact upon one's life and identity, however little attention has been paid to the experiences of those with multiple conditions. Ehlers-Danlos syndrome (EDS) is a rarely-diagnosed connective tissue disorder causing extensive debilitating symptoms and while these symptoms are primarily physical, EDS often co-occurs with autism. This study sought to gain insight into the experience of autistic individuals living with EDS and thus investigate how illness identity occurs with multiple conditions. DESIGN: Interpretative Phenomenological Analysis (IPA) was used. METHODS: Semi-structured interviews were conducted with four autistic women living with EDS. RESULTS: Analysis resulted in three superordinate themes, consisting of 'Transformation,' 'Making sense,' and 'The negatives.' While interrelated, these themes capture the ways in which the conditions have changed the participants' lives, both positively and negatively. Furthermore, they capture how the participants make sense and create meaning in their new identities. CONCLUSION: Individuals living with co-occurring conditions have multiple illness identities which affect their overall sense of self. Within this study, participants incorporated both conditions into their new identities, although the extent to which they rejected or accepted these conditions varied individually based on numerous biopsychosocial factors, which shifted continually, including healthcare professionals' attitudes and awareness of conditions, stigma, finding community and symptom severity. Thus, illness identity is in a constant state of flux. These findings highlight the need for more individualised, supportive care for autistic individuals living with EDS.

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: 20 Sep 2026 01:01.

Cited references
54
With a DOI
47
Without a DOI, from raw bibliography text
7
4 / 54 (7.4%) cited references include at least one author identified as autistic.
References with data to complete
1 / 54 (1.9%)
References with detected author names
54 / 54 (100.0%)
Without detected author names
0
Without a structured title
1
Without a stable identifier
7
References with raw author names still to review
0
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
288
From DOI or external metadata
288
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
43 / 288 (14.9%) names are linked to an author already present in AutiHub. 245 / 288 (85.1%) names are not yet linked.
Names linked to a person identified as autistic
4 / 288 (1.4%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 4 / 43 (9.3%). Distinct people identified as autistic: 4 / 248 (1.6%).
  1. Oliver C. Robinson (2014). Sampling in Interview-Based Qualitative Research: A Theoretical and Practical Guide . Qualitative Research in Psychology, 11(1), 25-41. Informa UK Limited.
    Type: Article DOI: 10.1080/14780887.2013.801543 OpenAlex: https://openalex.org/W1829634234
    Crossref OpenAlex OpenCitations
  2. Carolina Baeza-Velasco , David Cohen , Claude Hamonet , Elodie Vlamynck , Lautaro Diaz , Cora Cravero et al. (2018). Autism, Joint Hypermobility-Related Disorders and Pain . Frontiers in Psychiatry, 9, 656. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyt.2018.00656 OpenAlex: https://openalex.org/W2903961522
    Crossref OpenAlex OpenCitations
  3. Valentina Petrolini , Marta Jorba , Agustín Vicente (2023). What does it take to be rigid? Reflections on the notion of rigidity in autism . Frontiers in Psychiatry, 14, 1072362-1072362. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyt.2023.1072362 OpenAlex: https://openalex.org/W4320494240
    Crossref OpenAlex OpenCitations
  4. Kathy Charmaz (1983). Loss of self: a fundamental form of suffering in the chronically ill . Sociology of Health & Illness, 5(2), 168-195. Wiley.
    Type: Article DOI: 10.1111/1467-9566.ep10491512 OpenAlex: https://openalex.org/W1974655934
    Crossref OpenAlex OpenCitations
  6. Michael Bury (1982). Chronic illness as biographical disruption . Sociology of Health & Illness, 4(2), 167-182. Wiley.
    Type: Article DOI: 10.1111/1467-9566.ep11339939 OpenAlex: https://openalex.org/W2171810782
    Crossref OpenAlex OpenCitations
  8. Jenny L. L. Csecs , Valeria Iodice , Charlotte L. Rae , Alice Brooke , Rebecca Simmons , Lisa Quadt et al. (2022). Joint Hypermobility Links Neurodivergence to Dysautonomia and Pain . Frontiers in Psychiatry, 12, 786916-786916. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyt.2021.786916 OpenAlex: https://openalex.org/W4210394959
    Crossref OpenAlex OpenCitations
  9. Leen Oris , Jessica Rassart , Sofie Prikken , Margaux Verschueren , Liesbet Goubert , Philip Moons et al. (2016). Illness Identity in Adolescents and Emerging Adults With Type 1 Diabetes: Introducing the Illness Identity Questionnaire . Diabetes Care, 39(5), 757-763. American Diabetes Association.
    Type: Article DOI: 10.2337/dc15-2559 OpenAlex: https://openalex.org/W2299192123
    Crossref OpenAlex OpenCitations
  10. Angela F. Brady , Serwet Demirdas , Sylvie Fournel‐Gigleux , Neeti Ghali , Cecilia Giunta , Ines Kapferer‐Seebacher et al. (2017). The Ehlers–Danlos syndromes, rare types . American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175(1), 70-115. Wiley.
    Type: Article DOI: 10.1002/ajmg.c.31550 OpenAlex: https://openalex.org/W2595109880
    Crossref OpenAlex OpenCitations
  12. Martin Cederlöf , Henrik Larsson , Paul Lichtenstein , Catarina Almqvist , Eva Serlachius , Jonas F. Ludvigsson (2016). Nationwide population-based cohort study of psychiatric disorders in individuals with Ehlers–Danlos syndrome or hypermobility syndrome and their siblings . BMC Psychiatry, 16(1), 207. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s12888-016-0922-6 OpenAlex: https://openalex.org/W2471836915
    Crossref OpenAlex OpenCitations
  13. Antonio Bulbena , Carolina Baeza-Velasco , Andrea Bulbena‐Cabré , Guillem Pailhez , Hugo Critchley , Pradeep Chopra et al. (2017). Psychiatric and psychological aspects in the Ehlers–Danlos syndromes . American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175(1), 237-245. Wiley.
    Type: Article DOI: 10.1002/ajmg.c.31544 OpenAlex: https://openalex.org/W2586723129
    Crossref OpenAlex OpenCitations
  14. Cathy O'Mullan , Maryanne Doherty , Rosemary Coates , P. J. Matt Tilley (2019). Using Interpretative Phenomenological Analysis (IPA) to provide insight into female sexual difficulties . Sexual and Relationship Therapy, 34(1), 75-86. Informa UK Limited.
    Type: Article DOI: 10.1080/14681994.2017.1386300 OpenAlex: https://openalex.org/W2763642375
    Crossref OpenAlex OpenCitations
  15. Brad Tinkle , Marco Castori , Britta Berglund , Helen Cohen , Rodney Grahame , Hanadi Kazkaz et al. (2017). Hypermobile Ehlers–Danlos syndrome (a.k.a. Ehlers–Danlos syndrome Type III and Ehlers–Danlos syndrome hypermobility type): Clinical description and natural history . American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175(1), 48-69. Wiley.
    Type: Article DOI: 10.1002/ajmg.c.31538 OpenAlex: https://openalex.org/W2585772542
    Crossref OpenAlex OpenCitations
  16. Nicole E. Rosen , Catherine Lord , Fred R. Volkmar (2021). The Diagnosis of Autism: From Kanner to DSM-III to DSM-5 and Beyond . Journal of Autism and Developmental Disorders, 51(12), 4253-4270. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-021-04904-1 OpenAlex: https://openalex.org/W3130188805
    Crossref OpenAlex OpenCitations
  17. Carpenter (2019). Where are all the autistic girls? An introduction .
    Type: Other
    Crossref
  18. Joanne C Demmler , Mark D Atkinson , Emma J Reinhold , Ernest Choy , Ronan A Lyons , Sinead T Brophy (2019). Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: a national electronic cohort study and case–control comparison . BMJ Open, 9(11), e031365. BMJ.
    Type: Article DOI: 10.1136/bmjopen-2019-031365 OpenAlex: https://openalex.org/W2987538608
    Crossref OpenAlex OpenCitations
  19. Fransiska Malfait , Clair Francomano , Peter Byers , John Belmont , Britta Berglund , James Black et al. (2017). The 2017 international classification of the Ehlers–Danlos syndromes . American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175(1), 8-26. Wiley.
    Type: Article DOI: 10.1002/ajmg.c.31552 OpenAlex: https://openalex.org/W2597004434
    Crossref OpenAlex OpenCitations
  20. Rachel Loomes , Laura Hull , Will Mandy (2017). What Is the Male-to-Female Ratio in Autism Spectrum Disorder? A Systematic Review and Meta-Analysis . Journal of the American Academy of Child & Adolescent Psychiatry, 56(6), 466-474. Elsevier BV.
    Type: Article DOI: 10.1016/j.jaac.2017.03.013 OpenAlex: https://openalex.org/W2604697269
    Crossref OpenAlex OpenCitations
  21. Kate Cooper , Will Mandy , Catherine Butler , A. Russell (2022). The lived experience of gender dysphoria in autistic adults: An interpretative phenomenological analysis . Autism, 26(4), 963-974. SAGE Publications.
    Type: Article DOI: 10.1177/13623613211039113 OpenAlex: https://openalex.org/W3184285365
    Crossref OpenAlex OpenCitations
  22. Caitlin E. Shneider , Abigail S. Robbertz , Lindsey L. Cohen (2024). A Systematic Review of Relationships Between Illness Identity and Health-Related Outcomes in Individuals with Chronic Illnesses . Journal of Clinical Psychology in Medical Settings, 31(1), 130-142. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10880-023-09973-1 OpenAlex: https://openalex.org/W4387032830
    Crossref OpenAlex OpenCitations
  23. Angela L. Palmer-Wackerly , Phokeng M. Dailey , Jessica L. Krok-Schoen , Nancy D. Rhodes , Janice L. Krieger (2018). Patient Perceptions of Illness Identity in Cancer Clinical Trial Decision-Making . Health Communication, 33(8), 1045-1054. Informa UK Limited.
    Type: Article DOI: 10.1080/10410236.2017.1331189 OpenAlex: https://openalex.org/W2625259012
    Crossref OpenAlex OpenCitations
  24. Bruno Corrado , Gianluca Ciardi (2018). Hypermobile Ehlers-Danlos syndrome and rehabilitation: taking stock of evidence based medicine: a systematic review of the literature . Journal of Physical Therapy Science, 30(6), 843-847. Society of Physical Therapy Science.
    Type: Article DOI: 10.1589/jpts.30.847 OpenAlex: https://openalex.org/W2808155522
    Crossref OpenAlex OpenCitations
  25. Agnieszka Rynkiewicz , Małgorzata Janas-Kozik , Agnieszka Słopień (2019). Girls and women with autism . Psychiatria Polska, 53(4), 737-752. Komitet Redakcyjno - Wydawniczy Polskiego Towarzystwa Psychiatrycznego.
    Type: Article DOI: 10.12740/pp/onlinefirst/95098 OpenAlex: https://openalex.org/W2901260300
    Crossref OpenAlex OpenCitations
  26. Leen Oris , Koen Luyckx , Jessica Rassart , Liesbet Goubert , Eva Goossens , Silke Apers et al. (2018). Illness Identity in Adults with a Chronic Illness . Journal of Clinical Psychology in Medical Settings, 25(4), 429-440. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10880-018-9552-0 OpenAlex: https://openalex.org/W2788562671
    Crossref OpenAlex OpenCitations
  27. Catherine Lord , Traolach Brugha , Tony Charman , James Cusack * , Guillaume Dumas , Thomas W Frazier et al. (2020). Autism spectrum disorder . Nature Reviews Disease Primers, 6(1), 5. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/s41572-019-0138-4 OpenAlex: https://openalex.org/W2769544142
    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
  28. Catherine D. Tan (2018). “I'm a normal autistic person, not an abnormal neurotypical”: Autism Spectrum Disorder diagnosis as biographical illumination . Social Science & Medicine, 197, 161-167. Elsevier BV.
    Type: Article DOI: 10.1016/j.socscimed.2017.12.008 OpenAlex: https://openalex.org/W2774655211
    Crossref OpenAlex OpenCitations
  29. Chao Fang , Sarah Akhtar Baz , Laura Sheard , JD Carpentieri (2024). ‘I am just a shadow of who I used to be’—Exploring existential loss of identity among people living with chronic conditions of Long COVID . Sociology of Health & Illness, 46(1), 59-77. Wiley.
    Type: Article DOI: 10.1111/1467-9566.13690 OpenAlex: https://openalex.org/W4382777124
    Crossref OpenAlex OpenCitations
  30. Ghali (2019). Ehlers-Danlos syndromes . Medical Journal, 366, 1.
    Type: Other
    Crossref
  31. Rebecca Murray , Lynda Turner (2023). Using Communities of Practice Theory to Understand the Crisis of Identity in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) . Chronic Illness, 19(1), 56-64. SAGE Publications.
    Type: Article DOI: 10.1177/17423953211064989 OpenAlex: https://openalex.org/W4200142772
    Crossref OpenAlex OpenCitations
  32. Roy Richard Grinker (2020). Autism, “Stigma,” Disability . Current Anthropology, 61(S21), S55-S67. University of Chicago Press.
    Type: Article DOI: 10.1086/705748 OpenAlex: https://openalex.org/W2981477278
    Crossref OpenAlex OpenCitations
  33. Isabelle Weld-Blundell , Marissa Shields , Alexandra Devine , Helen Dickinson , Anne Kavanagh , Claudia Marck (2021). Vocational Interventions to Improve Employment Participation of People with Psychosocial Disability, Autism and/or Intellectual Disability: A Systematic Review . International Journal of Environmental Research and Public Health, 18(22), 12083. MDPI AG.
    Type: Article DOI: 10.3390/ijerph182212083 OpenAlex: https://openalex.org/W3212080065
    Crossref OpenAlex OpenCitations
  34. Liesbet Van Bulck , Koen Luyckx , Eva Goossens , Leen Oris , Philip Moons (2019). Illness identity: Capturing the influence of illness on the person’s sense of self . European Journal of Cardiovascular Nursing, 18(1), 4-6. Oxford University Press (OUP).
    Type: Article DOI: 10.1177/1474515118811960 OpenAlex: https://openalex.org/W2899809589
    Crossref OpenAlex OpenCitations
  35. Holly Hodges , Casey Fealko , Neelkamal Soares (2020). Autism spectrum disorder: definition, epidemiology, causes, and clinical evaluation . Translational Pediatrics, 9(S1), S55-S65. AME Publishing Company.
    Type: Article DOI: 10.21037/tp.2019.09.09 OpenAlex: https://openalex.org/W2981275956
    Crossref OpenAlex OpenCitations
  36. Jefferson (2004). Glossary of transcript symbols with an introduction .
    Type: Other
    Crossref
  37. Jennifer Langhinrichsen-Rohling , Chrystal L. Lewis , Sean McCabe , Emma C. Lathan , Gabrielle A. Agnew , Candice N. Selwyn et al. (2021). They’ve been BITTEN: reports of institutional and provider betrayal and links with Ehlers-Danlos Syndrome patients’ current symptoms, unmet needs and healthcare expectations . Therapeutic Advances in Rare Disease, 2, 26330040211022033-26330040211022033. SAGE Publications.
    Type: Article DOI: 10.1177/26330040211022033 OpenAlex: https://openalex.org/W3171436159
    Crossref OpenAlex OpenCitations
  38. Gregory Reychler , Maya‐Mafalda De Backer , Elise Piraux , William Poncin , Gilles Caty (2021). Physical therapy treatment of hypermobile Ehlers–Danlos syndrome: A systematic review . American Journal of Medical Genetics Part A, 185(10), 2986-2994. Wiley.
    Type: Article DOI: 10.1002/ajmg.a.62393 OpenAlex: https://openalex.org/W3171669207
    Crossref OpenAlex OpenCitations
  39. Kamilah B Thomas-Purcell , Robin J Jacobs , Tyler L Seidman , Amarilis Acevedo , Drenna Waldrop-Valverde , Raymond L Ownby (2019). A mixed analysis approach to elucidate the multiple chronic condition experience of English- and Spanish-speaking older adults . Clinical Interventions in Aging, Volume 14, 407-418. Informa UK Limited.
    Type: Article DOI: 10.2147/cia.s193215 OpenAlex: https://openalex.org/W2917336982
    Crossref OpenAlex OpenCitations
  40. Kelly A. Negrin , Susan E. Slaughter , Sherry Dahlke , Joanne Olson (2022). Successful Recruitment to Qualitative Research: A Critical Reflection . International Journal of Qualitative Methods, 21. SAGE Publications.
    Type: Article DOI: 10.1177/16094069221119576 OpenAlex: https://openalex.org/W4292059842
    Crossref OpenAlex OpenCitations
  41. Sara J MacLennan , Thomas Cox , Sarah Murdoch , Virginia Eatough (2022). An interpretative phenomenological analysis of the meaning of work to women living with breast cancer . Chronic Illness, 18(3), 503-516. SAGE Publications.
    Type: Article DOI: 10.1177/1742395320987883 OpenAlex: https://openalex.org/W3123870475
    Crossref OpenAlex OpenCitations
  42. Fransiska Malfait , Marco Castori , Clair A. Francomano , Cecilia Giunta , Tomoki Kosho , Peter H. Byers (2020). The Ehlers–Danlos syndromes . Nature Reviews Disease Primers, 6(1), 64. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/s41572-020-0194-9 OpenAlex: https://openalex.org/W3045511029
    Crossref OpenAlex OpenCitations
  43. Nigel P. Burrows (2019). Ehlers–Danlos Syndromes . In Harper's Textbook of Pediatric Dermatology (pp. 1111-1124). Wiley.
    Type: Book chapter DOI: 10.1002/9781119142812.ch93 OpenAlex: https://openalex.org/W2996282541
    OpenAlex
  44. Fransiska Malfait , Marlies Colman , Robin Vroman , Inge De Wandele , Lies Rombaut , Rachel E. Miller et al. (2021). Pain in the Ehlers–Danlos syndromes: Mechanisms, models, and challenges . American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 187(4), 429-445. Wiley.
    Type: Article DOI: 10.1002/ajmg.c.31950 OpenAlex: https://openalex.org/W3211477955
    Crossref OpenAlex OpenCitations
  45. Jade Eloise Norris , Laura Crane , Katie Maras (2020). Interviewing autistic adults: Adaptations to support recall in police, employment, and healthcare interviews . Autism, 24(6), 1506-1520. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320909174 OpenAlex: https://openalex.org/W3005198043
    Crossref OpenAlex OpenCitations
  46. Clara Meulien , Amaria Baghdadli (2025). A Systematic Review of the Stigma Experienced by People with Autism Spectrum Disorder Associated with Intellectual Disabilities and by Their Family Caregivers . Journal of Autism and Developmental Disorders, 55(11), 3955-3972. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-024-06435-x OpenAlex: https://openalex.org/W4400996265
    Crossref OpenAlex OpenCitations
  47. Søren T. Skou , Frances S. Mair , Martin Fortin , Bruce Guthrie , Bruno P. Nunes , J. Jaime Miranda et al. (2022). Multimorbidity . Nature Reviews Disease Primers, 8(1), 48-48. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/s41572-022-00376-4 OpenAlex: https://openalex.org/W4285390610
    Crossref OpenAlex OpenCitations
  48. NICE (2023). 10. 1016/j.ridd. 2025. 105084_bib29 Multimorbidity: How Common Islem- it? National Institute for Health and Care Excellence Website.
    Type: Other
    Crossref
  49. Matteo Rocchetti , Alessandra Bassotti , Jacopo Corradi , Stefano Damiani , Gianluigi Pasta , Salvatore Annunziata et al. (2021). Is the pain just physical? The role of psychological distress, quality of life, and autistic traits in ehlers–danlos syndrome, an Internet-based survey in Italy . Healthcare (Switzerland), 9(11), 1472. MDPI AG.
    Type: Article DOI: 10.3390/healthcare9111472 OpenAlex: https://openalex.org/W3208084970
    Crossref OpenAlex
  50. Deborah A Potter (2024). Biographical disruption, redefinition, and recovery: illness identities of women with depression and diabetes . Health (United Kingdom), 28(6), 918-936. SAGE Publications.
    Type: Article DOI: 10.1177/13634593231213773 OpenAlex: https://openalex.org/W4389509414
    Crossref OpenAlex
  51. Bob Franklin , Martin Hamer , Mark Hanna , Marie Kinsey , John E. Richardson (2005). Conversation Analysis . In Key Concepts in Journalism Studies (pp. 51-51). SAGE Publications Ltd.
    Type: Book chapter DOI: 10.4135/9781446215821.n44 OpenAlex: https://openalex.org/W4243237709
    OpenAlex
  52. Smith (2022). Interpretative phenomenological analysis .
    Type: Other
    Crossref
  53. Van Doren (2023). Rare Disease as a Social Identity: A Qualitative Inquiry with People with Ehlers-danlos Syndrome [PhD] .
    Type: Other
    Crossref
  54. WHO (2022). Mental Disorders Fact Sheet .
    Type: Other
    Crossref