Accès aux services pour les personnes autistes en Europe

Titre original en anglais : Access to services for autistic people across Europe

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Ikhsan, S. N. B. M., Holt, R., Man, J., Parsons, T., Schalbroeck, R., Ruigrok, A., Baranger, A., Allison, C., Doherty, M., Bosch, K. V. d., Terčon, J., Violland, P., Ghosh, A., Cusack, J., & Baron-Cohen, S. (2025). Access to services for autistic people across Europe. Molecular Autism, 16(1), 35-35. https://doi.org/10.1186/s13229-025-00664-2

Date de publication: 14/06/2025 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
15
Auteur·ices de la publication identifié·es comme autistes
2 / 15 (13,3 %)
  1. Siti Nurnadhirah Binte Mohd Ikhsan
  2. Rosemary Holt
  3. Joyce Man
  4. Tracey Parsons
  5. Rik Schalbroeck
  1. Amber Ruigrok
  2. Aurélie Baranger
  3. Carrie Allison
  4. Mary Doherty *
  5. Katrien Van den Bosch
  1. Jerneja Terčon
  2. Pierre Violland
  3. Anjuli Ghosh
  4. James Cusack *
  5. Simon Baron-Cohen

Résumé

CONTEXTE : Les communautés autistes en Europe continuent de rencontrer des difficultés pour accéder aux services malgré l’augmentation des taux de diagnostic de l’autisme ces dernières années. MÉTHODES : Afin d’étudier l’accès des personnes autistes aux services en Europe et les raisons d’un accès infructueux, nous avons mené l’enquête ACCESS-EU, comprenant 2322 personnes autistes ayant reçu un diagnostic formel et aidants familiaux vivant dans l’Union européenne (UE) et au Royaume-Uni (UK). L’enquête a également examiné les différences dans les résultats selon le groupe d’âge (adulte contre enfant) et le genre (masculin contre féminin). RÉSULTATS : Dans l’ensemble, les personnes autistes ont déclaré avoir accès à des services thérapeutiques (33,38 %), de santé mentale (29,89 %), éducatifs (27,05 %), médicaux (34,28 %), financiers (26,66 %), d’évaluation des besoins (14,90 %), d’information/orientation (14,73 %), de soins sociaux (14,43 %), d’emploi (7,54 %), de logement (6,80 %), juridiques (3,96 %), de ligne d’assistance (3,40 %) et autres (0,26 %), et la plupart (≥ 57,61 %) avaient attendu jusqu’à 6 mois entre l’orientation et l’accès à la plupart des services. Plusieurs répondants n’ont pas non plus pu accéder à des services thérapeutiques (13,53 %), de santé mentale (11,90 %), de diagnostic de l’autisme (5,92 %), d’évaluation des besoins (8,32 %), financiers (9,62 %), éducatifs (8,10 %), de soins sociaux (7,39 %), d’information/orientation (6,14 %), médicaux (7,28 %), de logement (5,92 %), d’emploi (5,43 %), juridiques (3,42 %) et de ligne d’assistance (2,34 %). Les raisons citées par les répondants pour leur accès infructueux aux services comprenaient l’indisponibilité des services (23,08 %), l’inadéquation des services ou l’inéligibilité du participant (20,04 %), de longues listes d’attente (17,42 %), le coût inabordable des services (11,80 %) et le refus d’accès au service en raison du diagnostic d’autisme (9,87 %), ainsi que d’autres raisons non répertoriées dans l’enquête (18,42 %). Des différences significatives selon le groupe d’âge et le genre ont été observées concernant l’accès réussi aux services, le temps d’attente, l’accès infructueux et les raisons de l’accès infructueux. Parmi les cinq pays les plus représentés dans l’enquête — le Royaume-Uni (33,33 %), l’Espagne (14,04 %), la Pologne (13,87 %), la France (11,07 %) et l’Allemagne (6,03 %) — l’accès global aux services était le plus incohérent en Pologne et au Royaume-Uni, le plus élevé en Allemagne et en Espagne, mais le plus faible en France. LIMITES : Les problèmes liés à la présentation de l’enquête, tels que les langues dans lesquelles l’enquête a été menée et la formulation de certaines questions, doivent être pris en compte, de même que les problèmes relatifs à la subjectivité et à l’ambiguïté de l’analyse des données, tels que la traduction en anglais des réponses non anglaises. CONCLUSIONS : Nos résultats suggèrent que l’accès aux services parmi les personnes autistes en Europe est incohérent. Une amélioration significative des politiques actuelles est nécessaire afin de renforcer l’accès aux services dans toute l’Europe.

BACKGROUND: Autistic communities in Europe continue to face difficulties accessing services despite increasing rates of autism diagnosis in recent years. METHODS: To investigate autistic people's access to services in Europe and reasons for unsuccessful access, we conducted the ACCESS-EU survey comprising of 2322 formally diagnosed autistic people and family carers living within the European Union (EU) and the United Kingdom (UK). The survey also examined age group (adult vs. child) and gender (male vs. female) differences in results. RESULTS: Overall, autistic people reported access to therapy (33.38%), mental health (29.89%), educational (27.05%), medical (34.28%), financial (26.66%), needs assessment (14.90%), information/referral (14.73%), social care (14.43%), employment (7.54%), housing (6.80%), legal (3.96%), helpline (3.40%) and other services (0.26%), and most (≥ 57.61%) had waited up to 6 months from referral to access most services. Several respondents were also unable to access therapeutic (13.53%), mental health (11.90%), autism diagnostic (5.92%), needs assessment (8.32%), financial (9.62%), educational (8.10%), social care (7.39%), information/referral (6.14%), medical (7.28%), housing (5.92%), employment (5.43%), legal (3.42%), and helpline services (2.34%). Reasons cited by respondents for their unsuccessful service access included service unavailability (23.08%), service unsuitability or participant ineligibility (20.04%), long waitlists (17.42%), service unaffordability (11.80%), and rejection from service due to autism diagnosis (9.87%), along with other reasons not listed in the survey (18.42%). Significant age group and gender differences were observed for successful access to services, waiting time, unsuccessful access and reasons for unsuccessful access. Among the five most represented countries in the survey-the UK (33.33%), Spain (14.04%), Poland (13.87%), France (11.07%) and Germany (6.03%)-overall service access was most inconsistent in Poland and the UK, highest in Germany and Spain but poorest in France. LIMITATIONS: Issues related to survey presentation such as the languages in which the survey was conducted and the phrasing of some questions should be considered, as well as issues regarding subjectivity and ambiguity of data analysis such as translation of non-English responses into English. CONCLUSIONS: Our findings suggest that service access among autistic people in Europe is inconsistent. Significant improvement to current policies is required to enhance access to services across Europe.

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
54
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
4 / 54 (7,4 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
9 / 336 (2,7 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 9 / 103 (8,7 %). Auteurices cité·es distinct·es identifié·es comme autistes : 7 / 274 (2,6 %).
Occurrences citées rattachées à la base AutiHub
103 / 336 (30,7 %)
Auteurices cité·es distinct·es rattaché·es : 87 / 274 (31,8 %)
Occurrences rattachées, non identifiées comme autistes
94 / 103 (91,3 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 94 / 336 (28,0 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 80 / 87 (92,0 %).
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