Autism in health care – what are patients and caregivers dissatisfied with? A study of complaints to patient boards in Sweden

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Hedlund, Å., Lindberg, M., & Jordal, M. (2026). Autism in health care – what are patients and caregivers dissatisfied with? A study of complaints to patient boards in Sweden. Advances in Autism, 1-18. https://doi.org/10.1108/aia-03-2026-0030

Publication date: 23 Sep 2026 Added to AutiHub: 25 Sep 2026 Type: Article Article language: English
Publisher source (DOI) OpenAlex source

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Authors

Publication authors
3
Publication authors identified as autistic
1 / 3 (33.3%)
  1. Åsa Hedlund *
  2. Magnus Lindberg
  3. Malin Jordal

Abstract

Purpose The number of people with an autism diagnosis is increasing globally. Health-care professionals may encounter these patients in any type of health-care setting, which makes it important that they understand the challenges autistic patients face in relation to health care. The purpose of this study was therefore to analyze autism-related complaints submitted to patient advisory boards in Sweden. Design/methodology/approach Eleven patient advisory boards provided patient complaint cases for the years 2022–2024. In total, 407 cases were analyzed both quantitatively (descriptive and comparative statistics) and qualitatively (manifest content analysis). Comparisons were made between physical and psychiatric health care. Findings Most complaints were submitted by caregivers of autistic patients and concerned negative staff attitudes; inappropriate or incorrect treatment; long waiting times (especially for neuropsychiatric assessments); insufficient information; poor coordination; limited involvement; and issues related to administration, accessibility, competence and continuity. A few complaints addressed the health-care environment and confidentiality breaches. Complaints about staff attitudes, waiting times, diagnostic processes and staff competence were significantly more frequent in psychiatric health care than in physical health care. Originality/value The findings from this unique and comprehensive analysis of patient complaint cases highlight the need for improved staff training, enhanced communication and better coordination in health care for autistic patients, particularly in psychiatric health care where complaints regarding staff attitudes, waiting times, diagnostic processes, and competence were most frequent.

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: 2 Oct 2026 01:35.

Cited references
39
With a DOI
32
Without a DOI, from raw bibliography text
7
13 / 39 (33.3%) cited references include at least one author identified as autistic.
References with data to complete
6 / 39 (15.4%)
References with detected author names
33 / 39 (84.6%)
Without detected author names
6
Without a structured title
6
Without a stable identifier
7
References with raw author names still to review
6
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
173
From DOI or external metadata
173
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
6
99 / 173 (57.2%) names are linked to an author already present in AutiHub. 74 / 173 (42.8%) names are not yet linked.
Names linked to a person identified as autistic
36 / 173 (20.8%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 36 / 99 (36.4%). Distinct people identified as autistic: 25 / 159 (15.7%).
  1. U.H Graneheim , B Lundman (2004). Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness . Nurse Education Today, 24(2), 105-112. Elsevier BV.
    Type: Article DOI: 10.1016/j.nedt.2003.10.001 OpenAlex: https://openalex.org/W2122328334
    Crossref OpenAlex
  2. Emilyane de Oliveira Santana Amaral , Sergio Roberto Peres Line (2021). Current use of effect size or confidence interval analyses in clinical and biomedical research . Scientometrics, 126(11), 9133. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s11192-021-04150-3 OpenAlex: https://openalex.org/W3199379161
    Crossref OpenAlex
  3. Anna RÅBERUS , Inger K HOLMSTRÖM , Kathleen GALVIN , Annelie J SUNDLER (2019). The nature of patient complaints: a resource for healthcare improvements . International Journal for Quality in Health Care, 31(7), 556. Oxford University Press (OUP).
    Type: Article DOI: 10.1093/intqhc/mzy215 OpenAlex: https://openalex.org/W2896632501
    Crossref OpenAlex
  5. 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
  7. Annelie J. Sundler , Laura Darcy , Anna Råberus , Inger K. Holmström (2020). Unmet health-care needs and human rights: a qualitative analysis of patients’ complaints in light of the right to health and health care . Health Expectations, 23(3), 614. Wiley.
    Type: Article DOI: 10.1111/hex.13038 OpenAlex: https://openalex.org/W3007233217
    Crossref OpenAlex
  8. Simone Capp , Aoibhe De Burca , Ümit Aydin , Jessica Agnew-Blais , Alexandra Lautarescu , Angelica Ronald et al. (2025). Depression and anxiety are increased in autism and ADHD: Evidence from a young adult community‐based sample . JCPP Advances, 5(4), e70003. Wiley.
    Type: Article DOI: 10.1002/jcv2.70003 OpenAlex: https://openalex.org/W4408969468
    Crossref OpenAlex
  9. Frederic Perrel (2022). Integrative review about somatic care improvement tools for people with autistic syndrome disorder . Perspectives in Psychiatric Care, 58(3), 1177. Wiley.
    Type: Article DOI: 10.1111/ppc.12876 OpenAlex: https://openalex.org/W3169528152
    Crossref OpenAlex
  10. Centers for Disease Control and Prevention (2024), “Data and statistics on autism spectrum disorder”, Atlanta (GA): CDC, available at:Link to the cited article.
    Type: Other
    Crossref
  11. Matthew Pearce , Victoria Wilkins , David Chaulk (2021). Using patient complaints to drive healthcare improvement: a narrative overview . Hospital Practice, 49(sup1), 393. Informa UK Limited.
    Type: Article DOI: 10.1080/21548331.2021.1973279 OpenAlex: https://openalex.org/W3195404013
    Crossref OpenAlex
  13. Daylin Delgado , Shannon Crowley LaPoint , Grace Lee Simmons , Julia Heinly , Whitney S. Shepherd de , Bridgett Kiernan et al. (2026). He just wants someone to hear him and listen to him: barriers and facilitators to autistic youth with anxiety receiving quality mental healthcare . Journal of Autism and Developmental Disorders, 56(2), 655. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-024-06574-1 OpenAlex: https://openalex.org/W4403360553
    Crossref OpenAlex
  14. Maria Strömberg , Lina Liman , Peter Bang , Kajsa Igelström (2022). Experiences of Sensory Overload and Communication Barriers by Autistic Adults in Health Care Settings . Autism in Adulthood, 4(1), 66-75. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2020.0074 OpenAlex: https://openalex.org/W3205684935
    Crossref OpenAlex
  16. Emeline Han , Katrina Scior , Katerina Avramides , Laura Crane (2022). A systematic review on autistic people's experiences of stigma and coping strategies . Autism Research, 15(1), 12-26. Wiley.
    Type: Article DOI: 10.1002/aur.2652 OpenAlex: https://openalex.org/W4200200179
    Crossref OpenAlex
  18. Sophia Dückert , Petia Gewohn , Hannah König , Daniel Schöttle , Alexander Konnopka , Pascal Rahlff et al. (2023). Barriers and needs in mental healthcare of adults with autism spectrum disorder in Germany: a qualitative study in autistic adults, relatives, and healthcare providers . BMC Psychiatry, 23(1), 528. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s12888-023-05026-x OpenAlex: https://openalex.org/W4385063947
    Crossref OpenAlex
  21. R. Randeniya , I. Vilares , J.B. Mattingley , Marta Garrido (2023). Increased functional activity, bottom-up and intrinsic effective connectivity in autism . NeuroImage: Clinical, 37, 103293. Elsevier BV.
    Type: Article DOI: 10.1016/j.nicl.2022.103293 OpenAlex: https://openalex.org/W4313424614
    Crossref OpenAlex
  22. Vahe Khachadourian , Behrang Mahjani , Sven Sandin , Alexander Kolevzon , Joseph D. Buxbaum , Abraham Reichenberg et al. (2023). Comorbidities in autism spectrum disorder and their etiologies . Translational Psychiatry, 13(1), 71. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/s41398-023-02374-w OpenAlex: https://openalex.org/W4322008792
    Crossref OpenAlex
  25. John H. Ward , Elizabeth Weir , Carrie T. Allison , Simon Baron-Cohen (2023). Increased rates of chronic physical health conditions across all organ systems in autistic adolescents and adults . Molecular Autism, 14(1), 35. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13229-023-00565-2 OpenAlex: https://openalex.org/W4386892471
    Crossref OpenAlex
  29. IBM Corp (2020). IBM SPSS Statistics for Windows, Version 27.0 [Computer Software] . IBM SPSS Statistics for Windows, Version 27.0 [Computer Software].
    Type: Other
    Crossref
  30. Sonja Mehtonen , Tuukka Puolakka , Jouni Kurola , Paulus Torkki (2025). Patient complaints are not common in emergency medical services: a mixed methods study . International Emergency Nursing, 78, 101552. Elsevier BV.
    Type: Article DOI: 10.1016/j.ienj.2024.101552 OpenAlex: https://openalex.org/W4404890175
    Crossref OpenAlex
  32. National Board of Health and Welfare (2024a), “Autism: prevalence and comorbidity”, Stockholm: National Board of Health and Welfare, available at:Link to a pdf of the cited article.
    Type: Other
    Crossref
  33. National Board of Health and Welfare (2024b), “National guidelines 2024 – ADHD and autism: prioritisation support for decision-makers in health care and social services”, Stockholm: National Board of Health and Welfare, available at:Link to the cited article.
    Type: Other
    Crossref
  34. Lucy Smith , Jennifer Kirton , Helen West , Leanne Jackson , Katie Herron , Mary Gemma Cherry (2026). The interpersonal experiences of autistic women and birthing people in the perinatal period: a systematic review using the autistic SPACE framework . Journal of Reproductive and Infant Psychology, 44(1), 4. Informa UK Limited.
    Type: Article DOI: 10.1080/02646838.2025.2526492 OpenAlex: https://openalex.org/W4412040803
    Crossref OpenAlex
  35. National Board of Health and Welfare (2024c), “National guidelines for ADHD and autism – support for governance and management”, Stockholm: National Board of Health and Welfare, available at:Link to a pdf of the cited article.
    Type: Other
    Crossref
  36. Maria Giuseppina Petruzzelli , Emilia Matera , Lucia Margari , Lucia Marzulli , Alessandra Gabellone , Chiara Cotugno et al. (2026). An update on the comorbidity of attention deficit/hyperactivity disorder (ADHD) and autism spectrum disorder (ASD) and its clinical management . Expert Review of Neurotherapeutics, 26(1), 75. Informa UK Limited.
    Type: Article DOI: 10.1080/14737175.2025.2599856 OpenAlex: https://openalex.org/W4417292627
    Crossref OpenAlex
  37. Alen Salkić , Magnus Tideman , Miriam I. Martini , Henrik Larsson , Paul Lichtenstein , Zheng Chang et al. (2026). The proportion of intellectual disability in autism spectrum disorder over two decades . Psychiatry Research, 363, 117246. Elsevier BV.
    Type: Article DOI: 10.1016/j.psychres.2026.117246 OpenAlex: https://openalex.org/W7162413110
    Crossref OpenAlex
  38. Region Gävleborg (2025), “Patient advisory committee. Gävle”, Region Gävleborg, available at:Link to the cited article.
    Type: Other
    Crossref
  39. Region Västerbotten (2021), “The pandemic and the patients: a follow-up – complaints to patient advisory committees in Sweden 2021. Umeå: Region Västerbotten”, available at:Link to the cited article (accessed28 September 2025).
    Type: Other
    Crossref