Autism care pathway in Europe

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Méndez, M. A., Oakley, B. F., Canitano, R., Cáceres, A. S. J., Tinelli, M., Knapp, M., Cusack, J., Parellada, M., Violland, P., Plas, J., Canal‐Bedia, R., Bejarano‐Martín, Á., Murphy, D., Quoidbach, V., & Arango, C. (2023). Autism care pathway in Europe. European Psychiatry, 66(1), e81-e81. https://doi.org/10.1192/j.eurpsy.2023.2435

Publication date: 1 Jan 2023 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
15
Publication authors identified as autistic
1 / 15 (6.7%)
  1. María Andreina Méndez
  2. Bethany F. Oakley
  3. Roberto Canitano
  4. Antonia San José Cáceres
  5. Michela Tinelli
  1. Martín Knapp
  2. James Cusack *
  3. Mara Parellada
  4. Pierre Violland
  5. J Plas
  1. Ricardo Canal‐Bedia
  2. Álvaro Bejarano‐Martín
  3. Declan Murphy
  4. Vinciane Quoidbach
  5. Celso Arango

Abstract

BACKGROUND: Autism is a lifelong complex neurodevelopmental condition that affects brain development and behaviour with significant consequences for everyday life. Despite its personal, familial, and societal impact, Europe-wide harmonised guidelines are still lacking for early detection, diagnosis, and intervention, leading to an overall unsatisfactory autistic person and carer journey. METHODS: The care pathway for autistic children and adolescents was analysed in Italy, Spain and the UK from the perspective of carers (using a survey aimed at caregivers of autistic children 0-18 years old), the autistic community, and professionals in order to identify major barriers (treatment gaps) preventing carers from receiving information, support, and timely screening/diagnosis and intervention. RESULTS: Across all three countries, analysis of the current care pathway showed: long waits from the time carers raised their first concerns about a child's development and/or behaviour until screening and confirmed diagnosis; delayed or no access to intervention once a diagnosis was confirmed; limited information about autism and how to access early detection services; and deficient support for families throughout the journey. CONCLUSIONS: These findings call for policy harmonisation in Europe to shorten long wait times for diagnosis and intervention and therefore, improve autistic people and their families' journey experience and quality of life.

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These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.

Cited references
39
Total cited references integrated for this publication.
Cited references with an identified autistic author
1 / 39 (2.6%)
Cited author occurrences identified as autistic
1 / 239 (0.4%)
Among occurrences linked to AutiHub author records: 1 / 52 (1.9%). Distinct cited authors identified as autistic: 1 / 190 (0.5%).
Cited author occurrences linked to AutiHub author records
52 / 239 (21.8%)
Distinct linked cited authors: 38 / 190 (20.0%)
Linked cited-author occurrences not identified as autistic
51 / 52 (98.1%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 51 / 239 (21.3%). Distinct linked cited authors not identified as autistic: 37 / 38 (97.4%).
  1. Karen Bluth , Patricia N. E. Roberson , Rhett M. Billen , Juli M. Sams (2013). A Stress Model for Couples Parenting Children With Autism Spectrum Disorders and the Introduction of a Mindfulness Intervention . Journal of Family Theory & Review, 5(3), 194-213. Wiley.
    Type: Article DOI: 10.1111/jftr.12015 OpenAlex: https://openalex.org/W1903243881
    Crossref OpenAlex
  2. (n.d.). [23] National Institute for Health and Care Excellence NICE. Autism spectrum disorder in under 19s: recognition, referral and diagnosis; 2021.
    Type: Other
    Crossref
  3. Somer Bishop , Jennifer Richler , Albert C. Cain , Catherine Lord (2007). Predictors of Perceived Negative Impact in Mothers of Children With Autism Spectrum Disorder . American Journal on Mental Retardation, 112(6), 450. Informa UK Limited.
    Type: Article DOI: 10.1352/0895-8017(2007)112[450:popnii]2.0.co;2 OpenAlex: https://openalex.org/W1963872353
    Crossref OpenAlex
  4. Catherine Lord , Tony Charman , Alexandra Havdahl , Paul Carbone , Evdokia Anagnostou , Brian Boyd et al. (2022). The Lancet Commission on the future of care and clinical research in autism . The Lancet, 399(10321), 271-334. Elsevier BV.
    Type: Article DOI: 10.1016/s0140-6736(21)01541-5 OpenAlex: https://openalex.org/W4200099564
    Crossref OpenAlex
  5. Mara Parellada , M.J. Penzol , L. Pina , C. Moreno , E. González-Vioque , G. Zalsman et al. (2014). The neurobiology of autism spectrum disorders . European Psychiatry, 29(1), 11-19. Cambridge University Press (CUP).
    Type: Article DOI: 10.1016/j.eurpsy.2013.02.005 OpenAlex: https://openalex.org/W1994118694
    Crossref OpenAlex
  6. Gillian Baird , Emily Simonoff , Andrew Pickles , Susie Chandler , Tom Loucas , David Meldrum et al. (2006). Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP) . The Lancet, 368(9531), 210-215. Elsevier BV.
    Type: Article DOI: 10.1016/s0140-6736(06)69041-7 OpenAlex: https://openalex.org/W2151524361
    Crossref OpenAlex
  7. Patricia Howlin , Susan Goode , Jane Hutton , Michael Rutter (2004). Adult outcome for children with autism . Journal of Child Psychology and Psychiatry, 45(2), 212-229. Wiley.
    Type: Article DOI: 10.1111/j.1469-7610.2004.00215.x OpenAlex: https://openalex.org/W2046265374
    Crossref OpenAlex
  8. María Magán-Maganto , Álvaro Bejarano‐Martín , Clara Fernández-Alvarez , Antonio Narzisi , Patricia García-Primo , Rafal Kawa et al. (2017). Early Detection and Intervention of ASD: A European Overview . Brain Sciences, 7(12), 159. MDPI AG.
    Type: Article DOI: 10.3390/brainsci7120159 OpenAlex: https://openalex.org/W2775341639
    Crossref OpenAlex
  9. Katharine Elizabeth Zuckerman , Olivia Jasmine Lindly , Brianna Kathleen Sinche (2015). Parental Concerns, Provider Response, and Timeliness of Autism Spectrum Disorder Diagnosis . The Journal of Pediatrics, 166(6), 1431-1439.e1. Elsevier BV.
    Type: Article DOI: 10.1016/j.jpeds.2015.03.007 OpenAlex: https://openalex.org/W2084885420
    Crossref OpenAlex
  10. Scott M. Myers , Chris Plauché Johnson , the Council on Children With Disabilities (2007). Management of Children With Autism Spectrum Disorders . Pediatrics, 120(5), 1162-1182. American Academy of Pediatrics (AAP).
    Type: Article DOI: 10.1542/peds.2007-2362 OpenAlex: https://openalex.org/W2113420497
    Crossref OpenAlex
  11. Evald Saemundsen , Páll Magnússon , Ingibjörg Georgsdóttir , Erlendur Egilsson , Vilhjálmur Rafnsson (2013). Prevalence of autism spectrum disorders in an Icelandic birth cohort . BMJ Open, 3(6), e002748. BMJ.
    Type: Article DOI: 10.1136/bmjopen-2013-002748 OpenAlex: https://openalex.org/W2087622391
    Crossref OpenAlex
  12. (n.d.). [32] National Autistic Society. The autism act, 10 years on: a report from the All Party Parliamentary Group on Autism on understanding services and support for autistic people and their families in England; 2019.
    Type: Other
    Crossref
  13. Paul A. Harris , Robert Taylor , Robert Thielke , Jonathon Payne , Nathaniel Gonzalez , Jose G. Conde (2009). Research electronic data capture (REDCap)—A metadata-driven methodology and workflow process for providing translational research informatics support . Journal of Biomedical Informatics, 42(2), 377-381. Elsevier BV.
    Type: Article DOI: 10.1016/j.jbi.2008.08.010 OpenAlex: https://openalex.org/W2093274439
    Crossref OpenAlex
  14. Mayada Elsabbagh , Gauri Divan , Yun‐Joo Koh , Young Shin Kim , Shuaib Kauchali , Carlos Marcín et al. (2012). Global Prevalence of Autism and Other Pervasive Developmental Disorders . Autism Research, 5(3), 160-179. Wiley.
    Type: Article DOI: 10.1002/aur.239 OpenAlex: https://openalex.org/W2098251401
    Crossref OpenAlex
  15. Fuentes (2012). Autism spectrum disorders . Autism spectrum disorders.
    Type: Other
    Crossref
  16. Martín Knapp , Renée Romeo , Jennifer Beecham (2009). Economic cost of autism in the UK . Autism, 13(3), 317-336. SAGE Publications.
    Type: Article DOI: 10.1177/1362361309104246 OpenAlex: https://openalex.org/W2099729797
    Crossref OpenAlex
  17. Quentin Guillon , Sophie Baduel , Álvaro Bejarano‐Martín , Ricardo Canal‐Bedia , María MagÁn-Maganto , Clara FernÁndez-Álvarez et al. (2022). Determinants of satisfaction with the detection process of autism in Europe: Results from the ASDEU study . Autism, 26(8), 2136-2150. SAGE Publications.
    Type: Article DOI: 10.1177/13623613221080318 OpenAlex: https://openalex.org/W4220900728
    Crossref OpenAlex
  18. Ariane V. S. Buescher , Zuleyha Cidav , Martín Knapp , David S. Mandell (2014). Costs of Autism Spectrum Disorders in the United Kingdom and the United States . JAMA Pediatrics, 168(8), 721. American Medical Association (AMA).
    Type: Article DOI: 10.1001/jamapediatrics.2014.210 OpenAlex: https://openalex.org/W2110143479
    Crossref OpenAlex
  19. Pavel Mohr , Silvana Galderisi , Patrice Boyer , Danuta Wasserman , Paul Arteel , Aagje Ieven et al. (2018). Value of schizophrenia treatment I: The patient journey . European Psychiatry, 53, 107-115. Cambridge University Press (CUP).
    Type: Article DOI: 10.1016/j.eurpsy.2018.06.007 OpenAlex: https://openalex.org/W2884476869
    Crossref OpenAlex
  21. Sandy Thompson-Hodgetts , Lonnie Zwaigenbaum , David Nicholas (2015). Profile and predictors of service needs for families of children with autism spectrum disorders . Autism, 19(6), 673-683. SAGE Publications.
    Type: Article DOI: 10.1177/1362361314543531 OpenAlex: https://openalex.org/W2140114114
    Crossref OpenAlex
  22. Barbara FC van Heijst , Hilde M. Geurts (2015). Quality of life in autism across the lifespan: A meta-analysis . Autism, 19(2), 158-167. SAGE Publications.
    Type: Article DOI: 10.1177/1362361313517053 OpenAlex: https://openalex.org/W2150681219
    Crossref OpenAlex
  23. Simon Baron-Cohen , Fiona J. Scott , Carrie Allison , Joanna Williams , Patrick Bolton , Fiona E. Matthews et al. (2009). Prevalence of autism-spectrum conditions: UK school-based population study . British Journal of Psychiatry, 194(6), 500-509. Royal College of Psychiatrists.
    Type: Article DOI: 10.1192/bjp.bp.108.059345 OpenAlex: https://openalex.org/W2161063401
    Crossref OpenAlex
  24. Benjamin Zablotsky , Lisa J. Colpe , Beverly A. Pringle , Michael D. Kogan , Catherine Rice , Stephen J. Blumberg (2017). Age of Parental Concern, Diagnosis, and Service Initiation Among Children With Autism Spectrum Disorder . American Journal on Intellectual and Developmental Disabilities, 122(1), 49-61. Informa UK Limited.
    Type: Article DOI: 10.1352/1944-7558-122.1.49 OpenAlex: https://openalex.org/W2572837832
    Crossref OpenAlex
  25. Amy M. Daniels , Ariel Como , Sabri Hergüner , Krasimira Kostadinova , Jasmina Stosic , Andy Shih (2017). Autism in Southeast Europe: A Survey of Caregivers of Children with Autism Spectrum Disorders . Journal of Autism and Developmental Disorders, 47(8), 2314-2325. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3145-x OpenAlex: https://openalex.org/W2610531191
    Crossref OpenAlex
  26. 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 . Journal of Autism and Developmental Disorders, 48(11), 3761-3772. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-018-3639-1 OpenAlex: https://openalex.org/W2808369589
    Crossref OpenAlex
  27. (n.d.). [30] IBM Corporation. IBM SPSS statistics for windows, version 25. 0. Armonk, NY: IBM Corporation; 2017.
    Type: Other
    Crossref
  28. Monika Roleska , Andres Roman-Urrestarazu , Sarah Griffiths , Amber Ruigrok , Rosemary Holt , Robin van Kessel et al. (2018). Autism and the right to education in the EU: Policy mapping and scoping review of the United Kingdom, France, Poland and Spain . PLOS ONE, 13(8), e0202336. Public Library of Science (PLoS).
    Type: Article DOI: 10.1371/journal.pone.0202336 OpenAlex: https://openalex.org/W2889054954
    Crossref OpenAlex
  29. Jonathan Green (2019). Editorial Perspective: Delivering autism intervention through development . Journal of Child Psychology and Psychiatry, 60(12), 1353-1356. Wiley.
    Type: Article DOI: 10.1111/jcpp.13110 OpenAlex: https://openalex.org/W2979536688
    Crossref OpenAlex
  30. Alison Presmanes Hill , Katharine E. Zuckerman , Éric Fombonne (2014). Epidemiology of Autism Spectrum Disorders . Handbook of Autism and Pervasive Developmental Disorders, Fourth Edition. Wiley.
    Type: Other DOI: 10.1002/9781118911389.hautc03 OpenAlex: https://openalex.org/W2912648355
    Crossref OpenAlex
  31. (2013). Diagnostic and statistical manual of mental disorders (DSM-5®) . Diagnostic and Statistical Manual Of Mental Disorders (DSM-5)..
    Type: Other
    Crossref
  32. Álvaro Bejarano‐Martín , Ricardo Canal‐Bedia , María Magán-Maganto , Clara Fernández-Álvarez , María Victoria Cilleros-Martín , María Cruz Sánchez-Gómez et al. (2020). Early Detection, Diagnosis and Intervention Services for Young Children with Autism Spectrum Disorder in the European Union (ASDEU): Family and Professional Perspectives . Journal of Autism and Developmental Disorders, 50(9), 3380-3394. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-04253-0 OpenAlex: https://openalex.org/W2979478955
    Crossref OpenAlex
  33. (2018). International classification of diseases for mortality and morbidity statistics . International classification of diseases for mortality and morbidity statistics.
    Type: Other
    Crossref
  34. Catherine Barthelemy (2019). [Autism, a neuro-developmental disorder]. Rev Prat, 69(7), 738.
    Type: Article OpenAlex: https://openalex.org/W3014236660
    Crossref OpenAlex
  35. Nice Guideline Updates Team (2017). Autism spectrum disorder in under 19s: recognition, referral and diagnosis .
    Type: Article OpenAlex: https://openalex.org/W2997110381
    OpenAlex
  36. (n.d.). [27] National Institute for Health and Care Excellence NICE. Autism spectrum disorder in under 19s: support and management; 2021.
    Type: Other
    Crossref
  37. (n.d.). [35] Autistica. Global summit: autism & epilepsy; 2017.
    Type: Other
    Crossref
  38. Glen O. Sallows , Tamlynn D. Graupner (2012). Autism Spectrum Disorders . Handbook of Evidence‐Based Practice in Clinical Psychology. Wiley.
    Type: Other DOI: 10.1002/9781118156391.ebcp001009 OpenAlex: https://openalex.org/W4211043487
    OpenAlex
  39. (n.d.). [37] Iemmi, VK, Ragan, I. The autism dividend: reaping the rewards of better investment; 2017.
    Type: Other
    Crossref