Priorities for change for autistic people across Europe

Ikhsan, S. N. B. M., Holt, R., Ruigrok, A., Man, J., Parsons, T., Gibbs, K., Bullock, E., Baranger, A., Allison, C., Doherty, M., Ghosh, A., Terčon, J., Bosch, K. V. d., & Baron-Cohen, S. (2026). Priorities for change for autistic people across Europe. Molecular Autism, 17(1), 12-12. https://doi.org/10.1186/s13229-026-00706-3

Publication date: 19 Feb 2026 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English

This publication is integrated into AutiHub through:

Authors

Publication authors
14
Publication authors identified as autistic
1 / 14 (7.1%)

Abstract

BACKGROUND: Despite rising rates of autism prevalence, there remains a pressing need to enhance the quality of life for autistic people in Europe and around the world. METHODS: We conducted the 10 Points for Change survey to identify the 10 most important areas that require improvement for autistic people across the region. Data from 1,709 autistic people, parents/carers and members of autism-related organisations residing within the European Union (EU) and the United Kingdom (UK) were analysed, together with autism-related differences (autistic vs. non-autistic; formal vs. no formal autism diagnosis) and gender differences (male vs. female) in results. RESULTS: Across groups, areas that require the most urgent changes are education, public awareness and understanding of autism, employment, and government funding for autism-specific services. Differences in results between groups reflect their specific needs and experiences. Discrimination is a crucial area for change according to autistic people with formal diagnosis of autism, whereas autistic people without formal diagnosis indicate diagnostic services as a priority for change. According to parents/carers and members of autism-related organisations, changes are also needed to improve social inclusion of autistic people. Other areas of priority for change across all groups include mental healthcare (within top 10 for autistic participants and parents/carers), support with daily living, and post-diagnostic services (the latter two within top 10 for parents/carers and members of autism-related organisations). For some areas, their identification and importance as priorities for change significantly varied with whether participants were autistic or formally diagnosed and autistic participants’ gender. Comparisons across countries with the greatest representation in the survey – Germany, the UK, France, Spain and Poland – revealed consistent priorities. LIMITATIONS: Consideration should be given to issues related to methodology and data availability such as how representative the sample is of countries across the EU and the UK. Autistic people with high support needs might have also been unable to participate directly and responses from carers representing them might not fully reflect their views or provide representative data. CONCLUSION: Change through concerted legislative actions within and across countries in Europe is needed to address the priority areas for change for autistic people.

Bibliography cited by this reference

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

Bibliography inclusion overview

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
65
Total cited references integrated for this publication.
Cited references with an identified autistic author
4 / 65 (6.2%)
Cited author occurrences identified as autistic
9 / 286 (3.1%)
Among occurrences linked to AutiHub author records: 9 / 98 (9.2%). Distinct cited authors identified as autistic: 9 / 216 (4.2%).
Cited author occurrences linked to AutiHub author records
98 / 286 (34.3%)
Distinct linked cited authors: 70 / 216 (32.4%)
Linked cited-author occurrences not identified as autistic
89 / 98 (90.8%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 89 / 286 (31.1%). Distinct linked cited authors not identified as autistic: 61 / 70 (87.1%).
  1. Virginia Braun , Victoria Clarke (2006). Using thematic analysis in psychology . Qualitative Research in Psychology, 3(2), 77-101. Informa UK Limited.
    Crossref OpenAlex
  2. Jade Eloise Norris , Rebecca Harvey , Laura Hull (2025). Post-diagnostic support for adults diagnosed with autism in adulthood in the UK: A systematic review with narrative synthesis . Autism, 29(2), 284-309. SAGE Publications.
    Crossref OpenAlex
  3. Donna M. Werling , Daniel H. Geschwind (2013). Sex differences in autism spectrum disorders . Current Opinion in Neurology, 26(2), 146-153. Ovid Technologies (Wolters Kluwer Health).
    Crossref OpenAlex
  4. Robin van Kessel , Sebastian Walsh , Amber Ruigrok , Rosemary Holt , Anneli Yliherva , Eija Kärnä et al. (2019). Autism and the right to education in the EU: policy mapping and scoping review of Nordic countries Denmark, Finland, and Sweden . Molecular Autism, 10(1), 44. Springer Science and Business Media LLC.
    Crossref OpenAlex
  5. Laura Crane , James W Chester , Lorna Goddard , Lucy A Henry , Elisabeth L. Hill (2016). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom . Autism, 20(2), 153-162. SAGE Publications.
    Crossref OpenAlex
  6. Karola Dillenburger , Lyn McKerr , Julie-Ann Jordan , Mickey Keenan (2016). Staff Training in Autism: The One-Eyed Wo/Man… . International Journal of Environmental Research and Public Health, 13(7), 716. MDPI AG.
    Crossref OpenAlex
  7. Maria Löthberg , Tatja Hirvikoski , Sonya Girdler , Sven Bölte , Ulf Jönsson (2024). Support in Daily Living for Young Adults with Neurodevelopmental Conditions in Sweden: A Qualitative Description of Current Practice . Journal of Autism and Developmental Disorders, 54(8), 3043-3058. Springer Science and Business Media LLC.
    Crossref OpenAlex
  8. Meng-Chuan Lai , Michael Lombardo , Amber Ruigrok , Bhismadev Chakrabarti , Bonnie Auyeung , Péter Szatmári et al. (2017). Quantifying and exploring camouflaging in men and women with autism . Autism, 21(6), 690-702. SAGE Publications.
    Crossref OpenAlex
  9. Carla Sousa , Paulina Tsvetkova , Patricia Pérez-Fuster , May Agius , Snezhana Kostova , Karolina Bolesta et al. (2025). Social Inclusion for People with Intellectual Disability and on the Autism Spectrum through Assistive Technologies: Current Needs and Future Priorities . Disability and Rehabilitation: Assistive Technology, 20(4), 917-929. Informa UK Limited.
    Crossref OpenAlex
  10. Theo Lorenc , Mark Rodgers , David Marshall , Hollie Melton , Rebecca Rees , Kath Wright et al. (2018). Support for adults with autism spectrum disorder without intellectual impairment: Systematic review . Autism, 22(6), 654-668. SAGE Publications.
    Crossref OpenAlex
  11. Judith Gould (2017). Towards understanding the under-recognition of girls and women on the autism spectrum . Autism, 21(6), 703-705. SAGE Publications.
    Crossref OpenAlex
  12. Renske Herrema , Deborah Garland , Malcolm Osborne , Mark Freeston , Emma Honey , Jacqui Rodgers (2017). Brief Report: What Happens When I Can No Longer Support My Autistic Relative? Worries About the Future for Family Members of Autistic Adults . Journal of Autism and Developmental Disorders, 47(11), 3659-3668. Springer Science and Business Media LLC.
    Crossref OpenAlex
  13. 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.
    Crossref OpenAlex
  14. Renske Herrema , Deborah Garland , Malcolm Osborne , Mark Freeston , Emma Honey , Jacqui Rodgers (2017). Mental Wellbeing of Family Members of Autistic Adults . Journal of Autism and Developmental Disorders, 47(11), 3589-3599. Springer Science and Business Media LLC.
    Crossref OpenAlex
  15. Owen McGill , Anna Robinson (2021). “Recalling hidden harms”: autistic experiences of childhood applied behavioural analysis (ABA) . Advances in Autism, 7(4), 269-282. Emerald.
    Crossref OpenAlex
  16. Sarah L. Ferri , Ted Abel , Edward S. Brodkin (2018). Sex Differences in Autism Spectrum Disorder: a Review . Current Psychiatry Reports, 20(2), 9. Springer Science and Business Media LLC.
    Crossref OpenAlex
  17. Peter K. Smith , Leticia López-Castro , Susanne Robinson , Anke Görzig (2019). Consistency of gender differences in bullying in cross-cultural surveys . Aggression and Violent Behavior, 45, 33-40. Elsevier BV.
    Crossref OpenAlex
  18. Jeremy R. Parr , Sarah Wigham , William Farr , Ian Male , Lucy Isard , Rhianna Lees et al. (2024). A national research survey of childhood autism assessment services in the UK: empirical evidence of diagnostic practice, challenges and improvement opportunities . BMJ Paediatrics Open, 8(1), e002496. BMJ.
    Crossref OpenAlex
  19. K. Hardcastle , M.A. Bellis , K. Ford , K. Hughes , J. Garner , G. Ramos Rodriguez (2018). Measuring the relationships between adverse childhood experiences and educational and employment success in England and Wales: findings from a retrospective study . Public Health, 165, 106-116. Elsevier BV.
    Crossref OpenAlex
  20. Elizabeth M Weir , Carrie Allison , Varun Warrier , Simon Baron-Cohen (2021). Increased prevalence of non-communicable physical health conditions among autistic adults . Autism, 25(3), 681-694. SAGE Publications.
    Crossref OpenAlex
  21. Sarah Griffiths , Carrie Allison , Rebecca Kenny , Rosemary Holt , Paula 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
  22. Meng-Chuan Lai (2023). Mental health challenges faced by autistic people . Nature Human Behaviour, 7(10), 1620-1637. Springer Science and Business Media LLC.
    Crossref OpenAlex
  23. M Milić Babić (2012). Milić Babić M. Neke Odrednice Roditeljskog Stresa u Obiteljima Djece s teškoćama u Razvoju. Hrvatska Revija Za Rehabilitacijska istraživanja. 2012;48:66–75. Hrvatska Revija Za Rehabilitacijska istraživanja, 48, 66.
    Type: Other
    Crossref
  24. Michelle Cleary , Sancia West , Rachel Kornhaber , Catherine Hungerford (2023). Autism, Discrimination and Masking: Disrupting a Recipe for Trauma . Issues in Mental Health Nursing, 44(9), 799-808. Informa UK Limited.
    Crossref OpenAlex
  25. Varun Warrier , David M. Greenberg , Elizabeth M Weir , Clara Buckingham , Paula Smith , Meng-Chuan Lai et al. (2020). Elevated rates of autism, other neurodevelopmental and psychiatric diagnoses, and autistic traits in transgender and gender-diverse individuals . Nature Communications, 11(1), 3959-3959. Springer Science and Business Media LLC.
    Crossref OpenAlex
  26. M. Ariel Cascio , Éric Racine (2022). Autism service preferences of parents/guardians and autistic adults in five countries . Autism Research, 15(3), 570-585. Wiley.
    Type: Article DOI: 10.1002/aur.2667 OpenAlex: https://openalex.org/W4205915793
    Crossref OpenAlex
  27. (n.d.). European Parliament. Harmonising the rights of autistic persons (2023/2728(RSP)). European Parliament. 2023. https://www.europarl.europa.eu/doceo/document/TA-9-2023-0343_EN.html . Accessed 22 Nov 2024.
    Type: Other
    Crossref
  28. Eric Rubenstein , Sarah Furnier (2021). #Bias: The Opportunities and Challenges of Surveys That Recruit and Collect Data of Autistic Adults Online . Autism in Adulthood, 3(2), 120-128. SAGE Publications.
    Crossref OpenAlex
  29. (n.d.). Ministry of Health, Social Services and Equality, Spain. Estrategia española en trastornos del espectro del autismo. Ministerio de Sanidad, Servicios Sociales e Igualdad. 2023. https://www.dsca.gob.es/sites/default/files/derechos-sociales/discapacidad/docs/Estrategia_Espanola_en_TEA.pdf . Accessed 15 May 2025.
    Type: Other
    Crossref
  30. Anna Melissa Romualdez , Brett Heasman , Zachary Walker , Jade Davies , Anna Remington (2021). “People Might Understand Me Better”: Diagnostic Disclosure Experiences of Autistic Individuals in the Workplace . Autism in Adulthood, 3(2), 157-167. SAGE Publications.
    Crossref OpenAlex
  31. (n.d.). Department of Health and Social Care, England. National strategy for autistic children, young people and adults: 2021 to 2026. Department of Health and Social Care, England. 2021. https://www.gov.uk/government/publications/national-strategy-for-autistic-children-young-people-and-adults-2021-to-2026/the-national-strategy-for-autistic-children-young-people-and-adults-2021-to-2026 . Accessed 15 May 2025.
    Type: Other
    Crossref
  32. Martina Micai , Antonio Ciaramella , Tommaso Salvitti , Francesca Fulceri , Laura Maria Fatta , Luise Poustka et al. (2022). Intervention Services for Autistic Adults: An ASDEU Study of Autistic Adults, Carers, and Professionals’ Experiences . Journal of Autism and Developmental Disorders, 52(4), 1623-1639. Springer Science and Business Media LLC.
    Crossref OpenAlex
  33. (n.d.). Autism Advisory Council. Respecting diversity, safeguarding equity: Malta’s 2021–2030 National Autism Strategy. Government of Malta, Ministry for Inclusion and Social Wellbeing. 2021. https://inclusion.gov.mt/wp-content/uploads/2023/04/National-Autism-Strategy-EN.pdf . Accessed 27 May 2025.
    Type: Other
    Crossref
  34. Martina Micai , Antonio Ciaramella , Tommaso Salvitti , Francesca Fulceri , Laura Maria Fatta , Luise Poustka et al. (2021). Autistic Adult Health and Professional Perceptions of It: Evidence From the ASDEU Project . Frontiers in Psychiatry, 12, 614102. Frontiers Media SA.
    Crossref OpenAlex
  35. (n.d.). Autism-Europe. Malta adopts its new Act for the empowerment of people on the autism spectrum. Autism-Europe. 2018. https://www.autismeurope.org/blog/2018/04/04/malta-adopts-its-new-act-for-the-empowerment-of-people-on-the-autism-spectrum/ . Accessed 27 May 2025.
    Type: Other
    Crossref
  36. Leann Smith DaWalt , Julie Lounds Taylor , Arezoo Movaghar , Jinkuk Hong , Bryan Kim , Murray Brilliant et al. (2021). Health profiles of adults with autism spectrum disorder: Differences between women and men . Autism Research, 14(9), 1896-1904. Wiley.
    Type: Article DOI: 10.1002/aur.2563 OpenAlex: https://openalex.org/W3173811501
    Crossref OpenAlex
  37. (n.d.). Spanish Confederation of Autism. El Consejo Nacional de Discapacidad aprueba el Plan de acción de la Estrategia Española en TEA. Confederación Autismo España. 2024. https://autismo.org.es/aprobacion-plan-accion-estrategia-espanola-tea/‌ . Accessed 15 May 2025.
    Type: Other
    Crossref
  38. Matthew de Broize , Kiah Evans , Andrew Whitehouse , John Wray , Valsamma Eapen , Anna Urbanowicz (2022). Exploring the Experience of Seeking an Autism Diagnosis as an Adult . Autism in Adulthood, 4(2), 130-140. SAGE Publications.
    Crossref OpenAlex
  39. (n.d.). Comité para la Promoción y Apoyo de las Niñas y Mujeres Autistas (CEPAMA). Autism and employment in Spain. European Council of Autistic People. 2021. https://eucap.eu/2021/03/28/autism-and-employment-in-spain/ . Accessed 15 May 2025.
    Type: Other
    Crossref
  40. Yvette Hus , Osnat Segal (2021). Challenges Surrounding the Diagnosis of Autism in Children . Neuropsychiatric Disease and Treatment, Volume 17, 3509-3529. Informa UK Limited.
    Crossref OpenAlex
  41. (n.d.). NVivo [Internet]. Lumivero. https://lumivero.com/products/nvivo/
    Type: Other
    Crossref
  42. Kaitlin H. Koffer Miller , Dylan S. Cooper , Wei Song , Lindsay Shea (2022). Self-reported service needs and barriers reported by autistic adults: Differences by gender identity . Research in Autism Spectrum Disorders, 92, 101916. Elsevier BV.
    Crossref OpenAlex
  43. (n.d.). European Commission. Eurobarometer. Europeans and their languages. 2024. https://europa.eu/eurobarometer/surveys/detail/2979 . Accessed 15 May 2025.
    Type: Other
    Crossref
  44. Rachel Slavny‐Cross , Carrie Allison , Sarah Griffiths , Simon Baron-Cohen (2022). Autism and the criminal justice system: An analysis of 93 cases . Autism Research, 15(5), 904-914. Wiley.
    Type: Article DOI: 10.1002/aur.2690 OpenAlex: https://openalex.org/W4220738934
    Crossref OpenAlex
  45. (n.d.). Binte Mohd Ikhsan SN, Holt R, Man J, et al. Access to services for autistic people across Europe. Mol Autism. In press.
    Type: Other
    Crossref
  46. Jelena Kuvač Kraljević , Ana Matić Škorić , Maja Roch , Damjana Kogovšek , Jerneja Novšak Brce (2022). Public awareness of developmental language disorder in Croatia, Italy and Slovenia . International Journal of Language & Communication Disorders, 57(6), 1269-1280. Wiley.
    Crossref OpenAlex
  47. (n.d.). Google Translate [Internet]. Google. https://translate.google.com . Accessed 30 May 2025.
    Type: Other
    Crossref
  48. Maria Sanchez , Jennifer C. Bullen , Matthew C. Zajic , Nancy S. McIntyre , Peter Mundy (2024). Behavioral gender differences in school-age children with autism . European Child & Adolescent Psychiatry, 33(4), 1201-1207. Springer Science and Business Media LLC.
    Crossref OpenAlex
  49. (n.d.). Microsoft Translator [Internet]. Microsoft. https://translator.microsoft.com/ . Accessed 30 May 2025.
    Type: Other
    Crossref
  50. (n.d.). DeepL Translator [Internet], DeepL. May SE. https://www.deepl.com/en/translator . Accessed 30 2025.
    Type: Other
    Crossref
  51. Lindenwood University, Saint Charles, USA , James Hutson (2023). Autism in Females Understanding the Overlooked Diagnoses Unique Challenges and Recommendations . Journal of Clinical and Medical Images, Case Reports, 3(3). OA Publishers Private Limited.
    Crossref OpenAlex
  52. Paula Hamilton , Katie Roberts (2025). “It's not as clear cut as autistic boys versus autistic girls.” Exploring autistic girls' experiences of mainstream secondary education . Journal of Research in Special Educational Needs, 25(4), 836-848. Wiley.
    Crossref OpenAlex
  53. Y Rivaldo (2023). Rivaldo Y, Nabella SD. Employee performance: Education, training, experience and work discipline. Calitatea. 2023;24:182–8. Calitatea, 24, 182.
    Type: Other
    Crossref
  54. (n.d.). Autism-Europe. AE Alternative Report for the second review of the EU by the CRPD Committee – Submission for the adoption of Concluding Observations on the EU. United Nations Human Rights Treaty Bodies. 2025. https://tbinternet.ohchr.org/_layouts/15/treatybodyexternal/Download.aspx?symbolno=INT%2FCRPD%2FICO%2FEUR%2F62156=en . Accessed 30 May 2025.
    Type: Other
    Crossref
  55. (n.d.). European Commission. Union of equality: Strategy for the rights of persons with disabilities 2021–2030 (COM/2021/101 final). European Commission. 2021. https://eur-lex.europa.eu/legal-content/EN/TXT/?uri=celex%3A52021DC0101 . Accessed 22 Nov 2024.
    Type: Other
    Crossref
  56. (n.d.). von der Leyen U, European Commission. Mission Letter – Olivér Várhelyi Commissioner-designate for Health and Animal Welfare. 2024. https://commission.europa.eu/document/download/b1817a1b-e62e-4949-bbb8-ebf29b54c8bd_en?filename=Mission%20letter%20-%20VARHELYI.pdf . Accessed 27 May 2025.
    Type: Other
    Crossref
  57. (n.d.). European Commission. Europe’s Choice: Political Guidelines for the Next European Commission 2024–2029. European Commission. 2024. https://commission.europa.eu/document/download/e6cd4328-673c-4e7a-8683-f63ffb2cf648_en . Accessed 27 May 2024.
    Type: Other
    Crossref
  58. (n.d.). World Health Organization. Comprehensive and coordinated efforts for the management of autism spectrum disorders. EB133. R1. Geneva: World Health Organization. 2013. https://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_17-en.pdf . Accessed 27 May 2025.
    Type: Other
    Crossref
  59. (n.d.). Autism-Europe. High-level conference on autism calls for a new strategy and reveals research results. Autism-Europe. 2025. https://www.autismeurope.org/blog/2025/04/28/high-level-conference-on-autism-calls-for-a-new-strategy-and-reveals-research-results/ . Accessed 30 May 2025.
    Type: Other
    Crossref
  60. (n.d.). Eurostat. Demography of Europe – 2024 edition. European Union. 2024. https://ec.europa.eu/eurostat/web/interactive-publications/demography-2024 . Accessed 15 May 2025.
    Type: Other
    Crossref
  61. (n.d.). Office for National Statistics. Census 2021. Population estimates for the UK, England, Wales, Scotland, and Northern Ireland: mid-2023. 2024. https://www.ons.gov.uk/peoplepopulationandcommunity/populationandmigration/populationestimates/bulletins/annualmidyearpopulationestimates/mid2023 . Accessed 15 May 2025.
    Type: Other
    Crossref