Priorités de changement pour les personnes autistes à travers l’Europe

Titre original en anglais : Priorities for change for autistic people across Europe

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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

Date de publication: 19/02/2026 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
14
Auteur·ices de la publication identifié·es comme autistes
1 / 14 (7,1 %)
  1. Siti Nurnadhirah Binte Mohd Ikhsan
  2. Rosemary Holt
  3. Amber Ruigrok
  4. Joyce Man
  5. Tracey Parsons
  1. Kathryn Gibbs
  2. Edward Bullock
  3. Aurélie Baranger
  4. Carrie Allison
  5. Mary Doherty *
  1. Anjuli Ghosh
  2. Jerneja Terčon
  3. Katrien Van den Bosch
  4. Simon Baron-Cohen

Résumé

CONTEXTE : Malgré l’augmentation des taux de prévalence de l’autisme, il demeure urgent d’améliorer la qualité de vie des personnes autistes en Europe et dans le monde entier. MÉTHODES : Nous avons mené l’enquête 10 Points for Change afin d’identifier les 10 domaines les plus importants nécessitant une amélioration pour les personnes autistes dans l’ensemble de la région. Les données de 1 709 personnes autistes, parents/aidants et membres d’organisations liées à l’autisme résidant au sein de l’Union européenne (UE) et du Royaume-Uni (UK) ont été analysées, ainsi que les différences liées à l’autisme (autistes vs non autistes ; diagnostic formel d’autisme vs absence de diagnostic formel) et les différences de genre (hommes vs femmes) dans les résultats. RÉSULTATS : Dans l’ensemble des groupes, les domaines nécessitant les changements les plus urgents sont l’éducation, la sensibilisation et la compréhension du public concernant l’autisme, l’emploi et le financement gouvernemental des services spécifiques à l’autisme. Les différences de résultats entre les groupes reflètent leurs besoins et expériences spécifiques. La discrimination constitue un domaine crucial de changement selon les personnes autistes ayant reçu un diagnostic formel d’autisme, tandis que les personnes autistes sans diagnostic formel indiquent les services diagnostiques comme une priorité de changement. Selon les parents/aidants et les membres d’organisations liées à l’autisme, des changements sont également nécessaires pour améliorer l’inclusion sociale des personnes autistes. Parmi les autres domaines prioritaires de changement dans l’ensemble des groupes figurent les soins de santé mentale (parmi les 10 premiers pour les participants autistes et les parents/aidants), l’aide à la vie quotidienne et les services post-diagnostic (ces deux derniers parmi les 10 premiers pour les parents/aidants et les membres d’organisations liées à l’autisme). Pour certains domaines, leur identification et leur importance en tant que priorités de changement variaient significativement selon que les participants étaient autistes ou avaient reçu un diagnostic formel, ainsi que selon le genre des participants autistes. Les comparaisons entre les pays les plus représentés dans l’enquête – l’Allemagne, le UK, la France, l’Espagne et la Pologne – ont révélé des priorités cohérentes. LIMITES : Il convient de prendre en considération les problèmes liés à la méthodologie et à la disponibilité des données, tels que le degré de représentativité de l’échantillon pour les pays de l’UE et du UK. Les personnes autistes ayant des besoins de soutien élevés pourraient également avoir été incapables de participer directement, et les réponses des aidants les représentant pourraient ne pas refléter pleinement leurs points de vue ni fournir des données représentatives. CONCLUSION : Des changements par des actions législatives concertées au sein des pays et entre les pays d’Europe sont nécessaires afin d’aborder les domaines prioritaires de changement pour les personnes autistes.

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.

Bibliographie citée par cette référence

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Vue d’ensemble de l’inclusion dans la bibliographie

Ces indicateurs décrivent la bibliographie citée importée pour cette publication. Les métriques de références citées utilisent le total des références citées comme dénominateur. Les métriques d’auteurices cité·es indiquent si elles utilisent toutes les occurrences d’auteurices cité·es ou seulement les occurrences rattachées à des auteurices déjà intégré·es à la base de données AutiHub. Ils utilisent les rattachements mis en cache entre les auteurices cité·es et les auteurices intégré·es à la base de données AutiHub. Dernier calcul : 16/08/2026 11:30.

Références citées
65
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
4 / 65 (6,2 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
9 / 286 (3,1 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 9 / 98 (9,2 %). Auteurices cité·es distinct·es identifié·es comme autistes : 9 / 216 (4,2 %).
Occurrences citées rattachées à la base AutiHub
98 / 286 (34,3 %)
Auteurices cité·es distinct·es rattaché·es : 70 / 216 (32,4 %)
Occurrences rattachées, non identifiées comme autistes
89 / 98 (90,8 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 89 / 286 (31,1 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 61 / 70 (87,1 %).
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