[article]
| Titre : |
Access to services for autistic people across Europe |
| Type de document : |
texte imprimé |
| Auteurs : |
Siti Nurnadhirah BINTE MOHD IKHSAN, Auteur ; Rosemary HOLT, Auteur ; Joyce MAN, Auteur ; Tracey PARSONS, Auteur ; Rik SCHALBROECK, Auteur ; Amber RUIGROK, Auteur ; Aurélie BARANGER, Auteur ; Carrie ALLISON, Auteur ; Mary DOHERTY, Auteur ; Katrien VAN DEN BOSCH, Auteur ; Jerneja TERČON, Auteur ; Pierre VIOLLAND, Auteur ; Anjuli GHOSH, Auteur ; James CUSACK, Auteur ; Simon BARON-COHEN, Auteur ; Siti Nurnadhirah Secondary BINTE MOHD IKHSAN, Auteur ; Rosemary HOLT, Auteur ; Joyce MAN, Auteur ; Tracey PARSONS, Auteur ; Rik SCHALBROECK, Auteur ; Amber RUIGROK, Auteur ; Aurélie BARANGER, Auteur ; Carrie ALLISON, Auteur ; Mary DOHERTY, Auteur ; Katrien VAN DEN BOSCH, Auteur ; Jerneja TERČON, Auteur ; Pierre VIOLLAND, Auteur ; Anjuli GHOSH, Auteur ; James CUSACK, Auteur ; Simon BARON-COHEN, Auteur |
| Article en page(s) : |
35 |
| Langues : |
Anglais (eng) |
| Mots-clés : |
Humans Male Health Services Accessibility/statistics & numerical data Female Adult Autistic Disorder/therapy/epidemiology/diagnosis Europe/epidemiology Adolescent Middle Aged Child Young Adult Surveys and Questionnaires United Kingdom Autism Europe Policy Service access Service barriers Services Survey conducted in accordance with the principles outlined in the Declaration of Helsinki. All participants gave written informed consent in the ACCESS-EU study, which was approved by the Cambridge Psychology Research Ethics Committee (reference number PRE.2019.088). As this research involved an online survey, it adhered to ethical standards for informed consent, participant confidentiality, and data protection. All participants were provided with a clear informed consent form and assured that their participation was voluntary, anonymous, and confidential. Consent for publication: Not applicable. Competing interests: Simon Baron-Cohen is the previous Editor-in-Chief of Molecular Autism. |
| Index. décimale : |
PER Périodiques |
| Résumé : |
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. |
| En ligne : |
https://dx.doi.org/10.1186/s13229-025-00664-2 |
| Permalink : |
https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=569 |
in Molecular Autism > 16 (2025) . - 35
[article] Access to services for autistic people across Europe [texte imprimé] / Siti Nurnadhirah BINTE MOHD IKHSAN, Auteur ; Rosemary HOLT, Auteur ; Joyce MAN, Auteur ; Tracey PARSONS, Auteur ; Rik SCHALBROECK, Auteur ; Amber RUIGROK, Auteur ; Aurélie BARANGER, Auteur ; Carrie ALLISON, Auteur ; Mary DOHERTY, Auteur ; Katrien VAN DEN BOSCH, Auteur ; Jerneja TERČON, Auteur ; Pierre VIOLLAND, Auteur ; Anjuli GHOSH, Auteur ; James CUSACK, Auteur ; Simon BARON-COHEN, Auteur ; Siti Nurnadhirah Secondary BINTE MOHD IKHSAN, Auteur ; Rosemary HOLT, Auteur ; Joyce MAN, Auteur ; Tracey PARSONS, Auteur ; Rik SCHALBROECK, Auteur ; Amber RUIGROK, Auteur ; Aurélie BARANGER, Auteur ; Carrie ALLISON, Auteur ; Mary DOHERTY, Auteur ; Katrien VAN DEN BOSCH, Auteur ; Jerneja TERČON, Auteur ; Pierre VIOLLAND, Auteur ; Anjuli GHOSH, Auteur ; James CUSACK, Auteur ; Simon BARON-COHEN, Auteur . - 35. Langues : Anglais ( eng) in Molecular Autism > 16 (2025) . - 35
| Mots-clés : |
Humans Male Health Services Accessibility/statistics & numerical data Female Adult Autistic Disorder/therapy/epidemiology/diagnosis Europe/epidemiology Adolescent Middle Aged Child Young Adult Surveys and Questionnaires United Kingdom Autism Europe Policy Service access Service barriers Services Survey conducted in accordance with the principles outlined in the Declaration of Helsinki. All participants gave written informed consent in the ACCESS-EU study, which was approved by the Cambridge Psychology Research Ethics Committee (reference number PRE.2019.088). As this research involved an online survey, it adhered to ethical standards for informed consent, participant confidentiality, and data protection. All participants were provided with a clear informed consent form and assured that their participation was voluntary, anonymous, and confidential. Consent for publication: Not applicable. Competing interests: Simon Baron-Cohen is the previous Editor-in-Chief of Molecular Autism. |
| Index. décimale : |
PER Périodiques |
| Résumé : |
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. |
| En ligne : |
https://dx.doi.org/10.1186/s13229-025-00664-2 |
| Permalink : |
https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=569 |
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