Access to services for autistic people across Europe / Siti Nurnadhirah BINTE MOHD IKHSAN in Molecular Autism, 16 (2025)  

Public ISBD [article]  inMolecular Autism > 16 (2025) . - 35 Titre : Access to services for autistic people across Europe Type de document : texte imprimé Auteurs : Siti Nurnadhirah BINTE MOHD IKHSAN, Auteur ; Rosemary J. HOLT, Auteur ; Joyce MAN, Auteur ; Tracey PARSONS, Auteur ; Rik SCHALBROECK, Auteur ; Amber N.V. RUIGROK, Auteur ; Aurélie BARANGER, Auteur ; Carrie ALLISON, Auteur ; Mary DOHERTY, Auteur ; Katrien VAN DEN BOSCH, Auteur ; Jerneja TERÄŒON, Auteur ; Pierre VIOLLAND, Auteur ; Anjuli GHOSH, Auteur ; James CUSACK, Auteur ; Simon BARON-COHEN, Auteur ; Siti Nurnadhirah BINTE MOHD IKHSAN, Auteur ; Rosemary J. HOLT, Auteur ; Joyce MAN, Auteur ; Tracey PARSONS, Auteur ; Rik SCHALBROECK, Auteur ; Amber N.V. RUIGROK, Auteur ; Aurélie BARANGER, Auteur ; Carrie ALLISON, Auteur ; Mary DOHERTY, Auteur ; Katrien VAN DEN BOSCH, Auteur ; Jerneja TERÄŒON, 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 [article] Access to services for autistic people across Europe [texte imprimé] / Siti Nurnadhirah BINTE MOHD IKHSAN, Auteur ; Rosemary J. HOLT, Auteur ; Joyce MAN, Auteur ; Tracey PARSONS, Auteur ; Rik SCHALBROECK, Auteur ; Amber N.V. RUIGROK, Auteur ; Aurélie BARANGER, Auteur ; Carrie ALLISON, Auteur ; Mary DOHERTY, Auteur ; Katrien VAN DEN BOSCH, Auteur ; Jerneja TERÄŒON, Auteur ; Pierre VIOLLAND, Auteur ; Anjuli GHOSH, Auteur ; James CUSACK, Auteur ; Simon BARON-COHEN, Auteur ; Siti Nurnadhirah BINTE MOHD IKHSAN, Auteur ; Rosemary J. HOLT, Auteur ; Joyce MAN, Auteur ; Tracey PARSONS, Auteur ; Rik SCHALBROECK, Auteur ; Amber N.V. RUIGROK, Auteur ; Aurélie BARANGER, Auteur ; Carrie ALLISON, Auteur ; Mary DOHERTY, Auteur ; Katrien VAN DEN BOSCH, Auteur ; Jerneja TERÄŒON, 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

Development of a Goal Attainment Scale (GAS) outcome measure for clinical interventional studies in paediatric autism / Hannah STAUNTON in Autism, 29-12 (December 2025)  

Public ISBD [article]  inAutism > 29-12 (December 2025) . - p.2975-2990 Titre : Development of a Goal Attainment Scale (GAS) outcome measure for clinical interventional studies in paediatric autism Type de document : texte imprimé Auteurs : Hannah STAUNTON, Auteur ; Tammy MCIVER, Auteur ; Julian TILLMANN, Auteur ; Susanne CLINCH, Auteur ; Vivienne HANRAHAN, Auteur ; Bethany EWENS, Auteur ; Caroline AVERIUS, Auteur ; Alexandra I. BARSDORF, Auteur ; Aurélie BARANGER, Auteur ; Elizabeth BERRY KRAVIS, Auteur ; Tony CHARMAN, Auteur ; Haraldt NEERLAND, Auteur ; Alison T. SINGER, Auteur ; Pamela VENTOLA, Auteur ; Zackary JK WILLIAMS, Auteur ; Louise BARRETT, Auteur Article en page(s) : p.2975-2990 Langues : Anglais (eng) Mots-clés : adolescents  autism  autism spectrum disorders  clinical study  GAS  Goal Attainment Scaling  outcome measure  personalised  qualitative research  school-age children Index. décimale : PER Périodiques Résumé : Existing clinical outcome assessments (COAs) have limitations in capturing treatment effects in autism for those who choose to enrol in clinical research. Some COAs include items that are not relevant or equally important to all autistic people; others are not sufficiently comprehensive. Goal Attainment Scaling (GAS), which measures individual experiences against personalised goals, has been proposed as a more individualised and change-sensitive approach to assess outcomes in clinical studies. We developed a novel GAS measure for use in paediatric autism studies based on qualitative interviews with autistic adolescents, parents and clinicians. Applying a methodologically robust approach, concept elicitation interviews (N = 40) were first conducted to understand and generate a bank of personalised goals, followed by cognitive debriefing interviews (N = 39) to provide feedback on a draft GAS manual. Twenty-five personalised goals were generated for core autistic characteristics (communication, socialisation, restrictive and repetitive behaviours), as well as associated characteristics and impacts. In debriefing interviews, adolescents and parents supported the use of personalised goals and clinicians recommended using such goals in clinical studies and practice. In conclusion, GAS measures may overcome some of the challenges with existing outcome measures and complement future outcome measurement strategies for clinical studies in paediatric autism.Lay Abstract Autistic children and adolescents and their parents support the use of personalised goals as a way of measuring the effects of new treatments for those who choose to enrol in clinical research. Health professionals also recommend using personalised goals in both their research and in treatment plans. Establishing personalised goals, a process known as Goal Attainment Scaling (GAS), means identifying goals according to the needs of the individual, as opposed to using standardised outcomes for all participants. Autism is a condition with many different characteristics and degrees of impact, and the tools commonly used to measure treatment effects, known as clinical outcome assessments (COAs), have limitations. Some COAs, for example, include outcomes that are not relevant to all autistic people; others do not include enough outcomes to represent the experience of all autistic people. GAS, which measures individual experiences against personalised goals, may be complementary to existing COAs to provide an individualised or tailor-made tool to evaluate outcomes as a result of an intervention. We developed a GAS measure for researchers/health professionals to use in studies with autistic children and adolescents. Our research was based on a total of 40 interviews with adolescents, parents and clinicians, asking open-ended questions about how children and adolescents experience autism in order to understand and create a bank of potential personalised goals. We then conducted 39 further interviews to ask them for their feedback on the first draft of the measure. In the end, we compiled a list of 25 personalised goals related to core and associated characteristics of autistic children and adolescents, including goals related to communication, socialisation, and restricted and repetitive behaviours. We hope that these findings will help to improve the measurement of meaningful outcomes for autistic children and adolescents in future studies. En ligne : https://dx.doi.org/10.1177/13623613251349904 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=571 [article] Development of a Goal Attainment Scale (GAS) outcome measure for clinical interventional studies in paediatric autism [texte imprimé] / Hannah STAUNTON, Auteur ; Tammy MCIVER, Auteur ; Julian TILLMANN, Auteur ; Susanne CLINCH, Auteur ; Vivienne HANRAHAN, Auteur ; Bethany EWENS, Auteur ; Caroline AVERIUS, Auteur ; Alexandra I. BARSDORF, Auteur ; Aurélie BARANGER, Auteur ; Elizabeth BERRY KRAVIS, Auteur ; Tony CHARMAN, Auteur ; Haraldt NEERLAND, Auteur ; Alison T. SINGER, Auteur ; Pamela VENTOLA, Auteur ; Zackary JK WILLIAMS, Auteur ; Louise BARRETT, Auteur . - p.2975-2990. Langues : Anglais (eng) in Autism > 29-12 (December 2025) . - p.2975-2990 Mots-clés : adolescents  autism  autism spectrum disorders  clinical study  GAS  Goal Attainment Scaling  outcome measure  personalised  qualitative research  school-age children Index. décimale : PER Périodiques Résumé : Existing clinical outcome assessments (COAs) have limitations in capturing treatment effects in autism for those who choose to enrol in clinical research. Some COAs include items that are not relevant or equally important to all autistic people; others are not sufficiently comprehensive. Goal Attainment Scaling (GAS), which measures individual experiences against personalised goals, has been proposed as a more individualised and change-sensitive approach to assess outcomes in clinical studies. We developed a novel GAS measure for use in paediatric autism studies based on qualitative interviews with autistic adolescents, parents and clinicians. Applying a methodologically robust approach, concept elicitation interviews (N = 40) were first conducted to understand and generate a bank of personalised goals, followed by cognitive debriefing interviews (N = 39) to provide feedback on a draft GAS manual. Twenty-five personalised goals were generated for core autistic characteristics (communication, socialisation, restrictive and repetitive behaviours), as well as associated characteristics and impacts. In debriefing interviews, adolescents and parents supported the use of personalised goals and clinicians recommended using such goals in clinical studies and practice. In conclusion, GAS measures may overcome some of the challenges with existing outcome measures and complement future outcome measurement strategies for clinical studies in paediatric autism.Lay Abstract Autistic children and adolescents and their parents support the use of personalised goals as a way of measuring the effects of new treatments for those who choose to enrol in clinical research. Health professionals also recommend using personalised goals in both their research and in treatment plans. Establishing personalised goals, a process known as Goal Attainment Scaling (GAS), means identifying goals according to the needs of the individual, as opposed to using standardised outcomes for all participants. Autism is a condition with many different characteristics and degrees of impact, and the tools commonly used to measure treatment effects, known as clinical outcome assessments (COAs), have limitations. Some COAs, for example, include outcomes that are not relevant to all autistic people; others do not include enough outcomes to represent the experience of all autistic people. GAS, which measures individual experiences against personalised goals, may be complementary to existing COAs to provide an individualised or tailor-made tool to evaluate outcomes as a result of an intervention. We developed a GAS measure for researchers/health professionals to use in studies with autistic children and adolescents. Our research was based on a total of 40 interviews with adolescents, parents and clinicians, asking open-ended questions about how children and adolescents experience autism in order to understand and create a bank of potential personalised goals. We then conducted 39 further interviews to ask them for their feedback on the first draft of the measure. In the end, we compiled a list of 25 personalised goals related to core and associated characteristics of autistic children and adolescents, including goals related to communication, socialisation, and restricted and repetitive behaviours. We hope that these findings will help to improve the measurement of meaningful outcomes for autistic children and adolescents in future studies. En ligne : https://dx.doi.org/10.1177/13623613251349904 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=571

L'emploi des personnes autistes en Europe / Aurélie BARANGER in Sésame, 194 (Juillet 2015)

Public ISBD [article]  inSésame > 194 (Juillet 2015) . - p.24 Titre : L'emploi des personnes autistes en Europe Type de document : texte imprimé Auteurs : Aurélie BARANGER, Auteur Année de publication : 2015 Article en page(s) : p.24 Langues : Français (fre) Index. décimale : PER Périodiques Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=264 [article] L'emploi des personnes autistes en Europe [texte imprimé] / Aurélie BARANGER, Auteur . - 2015 . - p.24. Langues : Français (fre) in Sésame > 194 (Juillet 2015) . - p.24 Index. décimale : PER Périodiques Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=264

Journées européennes de l'autisme : Mettre l'autisme à l'agenda politique des Etats membres de l'UE / Aurélie BARANGER in Link Autisme-Europe, 52 (Décembre 2009)

Public ISBD [article]  inLink Autisme-Europe > 52 (Décembre 2009) . - p.5 Titre : Journées européennes de l'autisme : Mettre l'autisme à l'agenda politique des Etats membres de l'UE Type de document : texte imprimé Auteurs : Aurélie BARANGER, Auteur Année de publication : 2009 Article en page(s) : p.5 Langues : Français (fre) Index. décimale : PER Périodiques Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=985 [article] Journées européennes de l'autisme : Mettre l'autisme à l'agenda politique des Etats membres de l'UE [texte imprimé] / Aurélie BARANGER, Auteur . - 2009 . - p.5. Langues : Français (fre) in Link Autisme-Europe > 52 (Décembre 2009) . - p.5 Index. décimale : PER Périodiques Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=985

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