How healthcare systems are experienced by autistic adults in the United Kingdom: A meta-ethnography

Authors

Abstract

Autistic adults are at increased risk of both mental and physical health difficulties, and yet can face barriers to accessing healthcare. A meta-ethnographic approach was used to conduct a review of the existing literature regarding autistic adults’ experiences of accessing healthcare. Four databases were systematically searched for qualitative and mixed-method studies reporting on the experiences of autistic adults without a co-occurring learning disability accessing adult healthcare services within the United Kingdom. Fifteen studies met the inclusion criteria, and seven steps were used to systematically extract the data and then generate novel themes. Three superordinate themes were identified: Professionals’ lack of knowledge can be damaging, Need to reduce processing demands and Adaptation to improve engagement. This review highlights the wide-reaching damaging impact misdiagnosis, inadequate or inappropriate treatment, overwhelming environments and inaccessible systems can have on the well-being and ability of autistic adults to engage with treatment. The lack of autism knowledge and understanding experienced in interactions with healthcare professionals, along with autistic adult’s own communication and sensory processing differences, demonstrates the need for widely delivered training co-produced with autistic adults alongside bespoke and person-centred adaptations. Lay abstract Autistic adults are more likely to experience mental and physical health difficulties, and yet can find it difficult to get the support that they need. A meta-ethnographic approach was used to review the existing research on autistic adults’ experiences of accessing healthcare. Four databases were searched for qualitative and mixed-method studies which looked at the experiences of autistic adults who did not also have a learning disability when using healthcare services in the United Kingdom. Fifteen papers met the criteria to be included, and seven steps were used to analyse the information and develop new themes. Three main themes were identified: Professionals’ lack of knowledge can be damaging, Need to reduce processing demands and Adaptation to improve engagement. This review highlights how damaging misdiagnosis, inappropriate treatment, overwhelming environments and systems that are difficult to access can have on the well-being of autistic adults. Limited knowledge and understanding about autism knowledge among healthcare professionals along with autistic adult’s own communication and sensory differences indicate that there is a need for improved training developed with autistic adults and adaptations.

1. Nicky Britten , Rona Campbell , Catherine Pope , Jenny Donovan , Myfanwy Morgan , Roisin Pill (2002). Using meta ethnography to synthesise qualitative research: a worked example . Journal of Health Services Research & Policy, 7(4), 209-215. SAGE Publications.

   Type: Article DOI: 10.1258/135581902320432732 OpenAlex: https://openalex.org/W1994592819

   Crossref OpenAlex OpenCitations
2. Dorota Ali *Autistic author. Learn more… , Sarah O’Brien *Autistic author. Learn more… , Laura Hull , Lorcan Kenny , Will Mandy (2023). ‘The key to this is not so much the technology. It’s the individual who is using the technology’: Perspectives on telehealth delivery for autistic adults during the COVID-19 pandemic . Autism, 27(2), 552-564. SAGE Publications.

   Type: Article DOI: 10.1177/13623613221108010 OpenAlex: https://openalex.org/W4283828445

   AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
3. Alfred Schutz (1962). Common-Sense and Scientific Interpretation of Human Action . In Phaenomenologica (pp. 3-47). Springer Netherlands.

   Type: Book chapter DOI: 10.1007/978-94-010-2851-6_1 OpenAlex: https://openalex.org/W2096229344

   Crossref OpenAlex OpenCitations
4. Tara R. Buck , Joseph Viskochil , Megan Farley , Hilary Coon , William M. McMahon , Jubel Morgan et al. (2014). Psychiatric Comorbidity and Medication Use in Adults with Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 44(12), 3063-3071. Springer Science and Business Media LLC.

   Type: Article DOI: 10.1007/s10803-014-2170-2 OpenAlex: https://openalex.org/W1997388980

   Crossref OpenAlex OpenCitations
5. 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 OpenCitations
6. Chloe Walsh , Sinéad Lydon , Emily O’Dowd , Paul O’Connor (2020). Barriers to Healthcare for Persons with Autism: A Systematic Review of the Literature and Development of A Taxonomy . Developmental Neurorehabilitation, 23(7), 413-430. Informa UK Limited.

   Type: Article DOI: 10.1080/17518423.2020.1716868 OpenAlex: https://openalex.org/W3004472967

   Crossref OpenAlex OpenCitations
7. Marta Caamaño , Leticia Boada , Jessica Merchán-Naranjo , Carmen Moreno , Cloe Llorente , Dolores Moreno et al. (2013). Psychopathology in Children and Adolescents with ASD Without Mental Retardation . Journal of Autism and Developmental Disorders, 43(10), 2442-2449. Springer Science and Business Media LLC.

   Type: Article DOI: 10.1007/s10803-013-1792-0 OpenAlex: https://openalex.org/W2021936384

   Crossref OpenAlex OpenCitations
8. Sheena K. Au‐Yeung , Louise Bradley , Ashley Robertson , Rebecca Shaw , Simon Baron-Cohen , Sarah Cassidy (2019). Experience of mental health diagnosis and perceived misdiagnosis in autistic, possibly autistic and non-autistic adults . Autism, 23(6), 1508-1518. SAGE Publications.

   Type: Article DOI: 10.1177/1362361318818167 OpenAlex: https://openalex.org/W2905534692

   Crossref OpenAlex OpenCitations
9. Janina Brede , Eilidh Cage , Joseph Trott , Lisa Palmer , Anika Smith , Lucy Serpell et al. (2022). “We Have to Try to Find a Way, a Clinical Bridge” - autistic adults' experience of accessing and receiving support for mental health difficulties: A systematic review and thematic meta-synthesis . Clinical Psychology Review, 93, 102131. Elsevier BV.

   Type: Article DOI: 10.1016/j.cpr.2022.102131 OpenAlex: https://openalex.org/W4210911395

   Crossref OpenAlex OpenCitations
10. C. Punshon , P. Skirrow , Glynis Murphy (2009). The `not guilty verdict' . Autism, 13(3), 265-283. SAGE Publications.

    Type: Article DOI: 10.1177/1362361309103795 OpenAlex: https://openalex.org/W2030351972

    Crossref OpenAlex OpenCitations
11. Charli Babb , Janina Brede , Catherine RG 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 OpenCitations
12. Shenae Calleja , Fakir M. Amirul Islam , Jonathan Kingsley , Rachael McDonald (2020). Healthcare access for autistic adults . Medicine, 99(29), e20899. Ovid Technologies (Wolters Kluwer Health).

    Type: Article DOI: 10.1097/md.0000000000020899 OpenAlex: https://openalex.org/W3043350455

    Crossref OpenAlex OpenCitations
13. Lydia Jones , Lorna Goddard , Elisabeth L. Hill , Lucy A. Henry , Laura Crane (2014). Experiences of Receiving a Diagnosis of Autism Spectrum Disorder: A Survey of Adults in the United Kingdom . Journal of Autism and Developmental Disorders, 44(12), 3033-3044. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1007/s10803-014-2161-3 OpenAlex: https://openalex.org/W2032693111

    Crossref OpenAlex OpenCitations
14. Pia Bradshaw , Elizabeth Pellicano , Mieke van Driel , Anna Urbanowicz (2019). How Can We Support the Healthcare Needs of Autistic Adults Without Intellectual Disability? Current Developmental Disorders Reports, 6(2), 45-56. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1007/s40474-019-00159-9 OpenAlex: https://openalex.org/W2944177211

    Crossref OpenAlex OpenCitations
15. Harley Bruce , Katie Munday *Autistic author. Learn more… , Steven K. Kapp *Autistic author. Learn more… (2023). Exploring the Experiences of Autistic Transgender and Non-Binary Adults in Seeking Gender Identity Health Care . Autism in Adulthood, 5(2), 191-203. SAGE Publications.

    Type: Article DOI: 10.1089/aut.2023.0003 OpenAlex: https://openalex.org/W4379522855

    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
16. Christina Nicolaidis , Dora M. Raymaker *Autistic author. Learn more… , Elesia Ashkenazy *Autistic author. Learn more… , Katherine McDonald , Sebastian Dern *Autistic author. Learn more… , Mel Baggs *Autistic author. Learn more… et al. (2015). “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum . Autism, 19(7), 824-831. SAGE Publications.

    Type: Article DOI: 10.1177/1362361315576221 OpenAlex: https://openalex.org/W2095111403

    AutiHub · Autistic Autism Scholarship Project AutiHub · Documentation center Crossref OpenAlex OpenCitations
17. Samuel Brice , Jacqui Rodgers , Barry Ingham , David Mason *Autistic author. Learn more… , Colin Wilson , Mark Freeston et al. (2021). The importance and availability of adjustments to improve access for autistic adults who need mental and physical healthcare: findings from UK surveys . BMJ Open, 11(3), e043336. BMJ.

    Type: Article DOI: 10.1136/bmjopen-2020-043336 OpenAlex: https://openalex.org/W3138477195

    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
18. Ketan R. Parmar , Catherine S. Porter , Christine M. Dickinson , Peter Baimbridge *Autistic author. Learn more… , James Pelham *Autistic author. Learn more… , Emma Gowen (2022). Autism-friendly eyecare: developing recommendations for service providers based on the experiences of autistic adults . Ophthalmic Physiol Opt, 42(4), 675. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1111/opo.12975 OpenAlex: https://openalex.org/W4221051766

    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
19. Gemma M. Griffith , Vasiliki Totsika , Susie Nash , Richard P. Hastings (2012). ‘I just don’t fit anywhere’: support experiences and future support needs of individuals with Asperger syndrome in middle adulthood . Autism, 16(5), 532-546. SAGE Publications.

    Type: Article DOI: 10.1177/1362361311405223 OpenAlex: https://openalex.org/W2118012655

    Crossref OpenAlex OpenCitations
20. Dora M. Raymaker *Autistic author. Learn more… , Katherine McDonald , Elesia Ashkenazy *Autistic author. Learn more… , Martha Gerrity , Mel Baggs *Autistic author. Learn more… , Clarissa Kripke et al. (2017). Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities . Autism, 21(8), 972-984. SAGE Publications.

    Type: Article DOI: 10.1177/1362361316661261 OpenAlex: https://openalex.org/W2521686427

    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
21. Audrey McMillion , Jo Van Herwegen , Adele Johnson , Joana Monteiro , Aaron J. Cronin , Anna Remington (2021). Dental experiences of a group of autistic adults based in the United Kingdom . Special Care in Dentistry, 41(4), 474-488. Wiley.

    Type: Article DOI: 10.1111/scd.12583 OpenAlex: https://openalex.org/W3135697601

    Crossref OpenAlex OpenCitations
22. Mourad Ouzzani , Hossam Hammady , Zbys Fedorowicz , Ahmed Elmagarmid (2016). Rayyan—a web and mobile app for systematic reviews . Systematic Reviews, 5(1), 210. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1186/s13643-016-0384-4 OpenAlex: https://openalex.org/W2560438049

    Crossref OpenAlex OpenCitations
23. Tiago S. Jesus (2022). Rigour and transparency in the family of systematic reviews: The International Journal of Health Planning and Management encourages prospective protocol registration . The International Journal of Health Planning and Management, 37(5), 2523-2527. Wiley.

    Type: Article DOI: 10.1002/hpm.3510 OpenAlex: https://openalex.org/W4281772564

    OpenCitations
24. Laura Crane , Richard Batty , Hanna Adeyinka , Lorna Goddard , Lucy A. Henry , Elisabeth L. Hill (2018). Autism diagnosis in the United Kingdom: perspectives of autistic adults, parents and professionals . J. Autism Dev. Disord., 48(11), 3761. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1007/s10803-018-3639-1 OpenAlex: https://openalex.org/W2808369589

    Crossref OpenAlex OpenCitations
25. 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 OpenCitations
26. Emma F. France , Maggie Cunningham , Nicola Ring , Isabelle Uny , Edward AS Duncan , Ruth G Jepson et al. (2019). Improving reporting of meta‐ethnography: The eMERG e reporting guidance . Journal of Advanced Nursing, 75(5), 1126-1139. Wiley.

    Type: Article DOI: 10.1111/jan.13809 OpenAlex: https://openalex.org/W2909113910

    Crossref OpenAlex OpenCitations
27. CASP Qualitative Checklist. (2018). Critical Appraisal Skills Programme. https://casp-uk.net/casp-tools-checklists/

    Type: Other

    Crossref
28. David Mason *Autistic author. Learn more… , Barry Ingham , Anna Urbanowicz , Cos Michael *Autistic author. Learn more… , Heather Birtles , Marc Woodbury-Smith et al. (2019). A Systematic Review of What Barriers and Facilitators Prevent and Enable Physical Healthcare Services Access for Autistic Adults . Journal of Autism and Developmental Disorders, 49(8), 3387-3400. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1007/s10803-019-04049-2 OpenAlex: https://openalex.org/W2945521062

    AutiHub · Autistic Autism Scholarship Project AutiHub · Documentation center Crossref OpenAlex OpenCitations
29. Department of Education & Department of Health and Social Care. (2021). Summary of findings from the government’s review of the National Autism Strategy ‘Think Autism’ call for evidence. Gov. Uk. https://www.gov.uk/government/consultations/review-of-the-national-autism-strategy-think-autism-call-for-evidence/outcome/summary-of-findings-from-the-governments-review-of-the-national-autism-strategy-think-autism-call-for-evidence

    Type: Other

    Crossref
30. Alexandra Leedham , Andrew R. Thompson , Richard Smith , Megan Freeth (2020). ‘I was exhausted trying to figure it out’: The experiences of females receiving an autism diagnosis in middle to late adulthood . Autism, 24(1), 135. SAGE Publications.

    Type: Article DOI: 10.1177/1362361319853442 OpenAlex: https://openalex.org/W2947577397

    Crossref OpenAlex OpenCitations
31. Sarah Griffiths , Carrie T. Allison , Rebecca Kenny , R. J. Holt , P. Smith , Simon Baron-Cohen (2019). The Vulnerability Experiences Quotient (VEQ): A Study of Vulnerability, Mental Health and Life Satisfaction in Autistic Adults . Autism Research, 12(10), 1516-1528. Wiley.

    Type: Article DOI: 10.1002/aur.2162 OpenAlex: https://openalex.org/W2949176131

    Crossref OpenAlex OpenCitations
32. Daniel Gilmore , Morgan Krantz , Lindy Weaver , Brittany N. Hand (2022). Healthcare service use patterns among autistic adults: A systematic review with narrative synthesis . Autism, 26(2), 317-331. SAGE Publications.

    Type: Article DOI: 10.1177/13623613211060906 OpenAlex: https://openalex.org/W4200018858

    Crossref OpenAlex OpenCitations
33. Rosemarie B. Wilson , Andrew R. Thompson , Georgina Rowse , Megan Freeth (2023). The experience of seeking, receiving, and reflecting upon a diagnosis of autism in the UK: A meta-synthesis of qualitative studies conducted with autistic individuals . Research in Autism Spectrum Disorders, 103, 102135. Elsevier BV.

    Type: Article DOI: 10.1016/j.rasd.2023.102135 OpenAlex: https://openalex.org/W4323923058

    Crossref OpenAlex OpenCitations
34. Matthew J Page , David Moher , Patrick M Bossuyt , Isabelle Boutron , Tammy C Hoffmann , Cynthia D Mulrow et al. (2021). The PRISMA 2020 statement: an updated guideline for reporting systematic reviews . BMJ, 372, n71. BMJ.

    Type: Article DOI: 10.1136/bmj.n71 OpenAlex: https://openalex.org/W3118615836

    Crossref OpenAlex
35. Miriam Harmens , Felicity Sedgewick , Hannah Hobson (2022). Autistic women’s diagnostic experiences: Interactions with identity and impacts on well-being . Women's Health, 18, 477. SAGE Publications.

    Type: Article DOI: 10.1177/17455057221137477 OpenAlex: https://openalex.org/W4309363025

    Crossref OpenAlex OpenCitations
36. David Mason *Autistic author. Learn more… , Barry Ingham , Heather Birtles , Cos Michael *Autistic author. Learn more… , Clare Scarlett , Ian A James et al. (2021). How to improve healthcare for autistic people: A qualitative study of the views of autistic people and clinicians . Autism, 25(3), 774-785. SAGE Publications.

    Type: Article DOI: 10.1177/1362361321993709 OpenAlex: https://openalex.org/W3159192570

    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
37. Moyna Catherine Talcer , Orla Duffy , Katy Pedlow (2023). A Qualitative Exploration into the Sensory Experiences of Autistic Mothers . Journal of Autism and Developmental Disorders, 53(2), 834-849. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1007/s10803-021-05188-1 OpenAlex: https://openalex.org/W3182387516

    Crossref OpenAlex OpenCitations
38. Sebastian C.K. Shaw *Autistic author. Learn more… , Laura Carravallah *Autistic author. Learn more… , Mona Johnson *Autistic author. Learn more… , Jane O’Sullivan , Nicholas Chown *Autistic author. Learn more… , Stuart Neilson et al. (2024). Barriers to healthcare and a 'triple empathy problem' may lead to adverse outcomes for autistic adults: a qualitative study . Autism, 28(7), 1746. SAGE Publications.

    Type: Article DOI: 10.1177/13623613231205629 OpenAlex: https://openalex.org/W4387692103

    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
39. George Noblit , R. Hare (1988). Meta-Ethnography . SAGE Publications, Inc..

    Type: Book DOI: 10.4135/9781412985000 OpenAlex: https://openalex.org/W4252621549

    Crossref OpenAlex OpenCitations
40. Ollie Pentz , Jennifer Cooke , Harriet Sharp (2023). Experiences of women with autistic spectrum condition accessing the Brighton and Hove Specialist Perinatal Mental Health Service . Mental Health Review Journal, 28(3), 233-241. Emerald.

    Type: Article DOI: 10.1108/mhrj-08-2022-0056 OpenAlex: https://openalex.org/W4362671053

    Crossref OpenAlex OpenCitations
41. Natalie Yau , Sonia Anderson , Ian C. Smith (2023). How is psychological wellbeing experienced by autistic women? Challenges and protective factors: A meta-synthesis . Research in Autism Spectrum Disorders, 102, 102101. Elsevier BV.

    Type: Article DOI: 10.1016/j.rasd.2022.102101 OpenAlex: https://openalex.org/W4317535181

    Crossref OpenAlex OpenCitations
42. Welsh Government. (2016). Prudent healthcare: Securing health and well-being for future generations. https://www.gov.wales/sites/default/files/publications/2019-04/securing-health-and-well-being-for-future-generations.pdf

    Type: Other

    Crossref