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

‘I did not think they could help me’: Autistic adults’ reasons for not seeking public healthcare when they last experienced suicidality / Tanya L. PROCYSHYN in Autism, 29-11 (November 2025)  

Public ISBD [article]  inAutism > 29-11 (November 2025) . - p.2677-2690 Titre : ‘I did not think they could help me’: Autistic adults’ reasons for not seeking public healthcare when they last experienced suicidality Type de document : texte imprimé Auteurs : Tanya L. PROCYSHYN, Auteur ; Rachel L. MOSELEY, Auteur ; Sarah J. MARSDEN, Auteur ; Carrie ALLISON, Auteur ; Tracey PARSONS, Auteur ; Sarah A. CASSIDY, Auteur ; Mirabel K. PELTON, Auteur ; Elizabeth WEIR, Auteur ; Tanatswa CHIKAURA, Auteur ; Holly HODGES, Auteur ; David MOSSE, Auteur ; Ian HALL, Auteur ; Lewis OWENS, Auteur ; Jon CHEYETTE, Auteur ; David CRICHTON, Auteur ; Jacqui RODGERS, Auteur ; Simon BARON-COHEN, Auteur Article en page(s) : p.2677-2690 Langues : Anglais (eng) Mots-clés : autism  mental health  public health  suicide Index. décimale : PER Périodiques Résumé : With autistic people at increased risk of dying by suicide, understanding barriers to help-seeking is crucial for suicide prevention efforts. Using an online survey designed in consultation with autistic people, we examined reasons why autistic adults living in the United Kingdom did not seek help from the National Health Service (NHS) when they last experienced suicidal thoughts or behaviours. Participants who disaffirmed help-seeking from the NHS (n = 754) were able to select from a prepopulated list of 20 reasons why and to enter their own. The three most commonly endorsed reasons were ‘I tried to cope and manage my feelings by myself’, ‘I did not think they could help me’ and ‘The waiting list is too long – no point’. Endorsement of reasons differed significantly with gender identity, age group and degree of lifetime suicidality. Four themes emerged from analysis of free-form responses: NHS is ineffective, NHS as antagonistic, Fear and consequences and Barriers to access. These findings highlight the need to foster more flexible healthcare systems capable of supporting autistic people, and that autistic people view as trustworthy and effective, to enable help-seeking behaviours with the potential to save lives.Lay abstract Autistic people are more likely than non-autistic people to think about, attempt and die by suicide. For people in crisis, public healthcare services are, in theory, a source of help. In reality, many non-autistic people do not seek help from healthcare services. We wanted to understand why autistic people living in the United Kingdom may not seek help from the National Health Service (NHS) when suicidal and if these reasons differed by characteristics like age and gender. This study tried to answer these questions using responses from a survey co-designed with autistic people about various aspects of suicidal experiences. Participants were able to select from a list of 20 reasons and enter their own explanations (free-form responses) why they did not seek NHS support when suicidal. Our findings show that the most common reasons were that people tried to cope and manage by themselves; they did not think the NHS could help; and they thought the waiting list was too long. Reasons for not seeking help differed by age and gender, as well as lifetime history of suicidal thoughts and behaviour. For example, cisgender women and transgender/gender-divergent participants were more likely to say that previous bad experiences with the NHS prevented them from seeking help, and people with experience of suicide attempts were more likely to have been turned away by the NHS in the past. The free-form responses showed that many participants believed the NHS was ineffective, had previously had negative experiences with the NHS, worried about the consequences of help-seeking and experienced barriers that prevented help-seeking. This work highlights the crucial change and work required to make the NHS safe and accessible for autistic people so they can reach out for help when suicidal. En ligne : https://dx.doi.org/10.1177/13623613251370789 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=570 [article] â€˜I did not think they could help me’: Autistic adults’ reasons for not seeking public healthcare when they last experienced suicidality [texte imprimé] / Tanya L. PROCYSHYN, Auteur ; Rachel L. MOSELEY, Auteur ; Sarah J. MARSDEN, Auteur ; Carrie ALLISON, Auteur ; Tracey PARSONS, Auteur ; Sarah A. CASSIDY, Auteur ; Mirabel K. PELTON, Auteur ; Elizabeth WEIR, Auteur ; Tanatswa CHIKAURA, Auteur ; Holly HODGES, Auteur ; David MOSSE, Auteur ; Ian HALL, Auteur ; Lewis OWENS, Auteur ; Jon CHEYETTE, Auteur ; David CRICHTON, Auteur ; Jacqui RODGERS, Auteur ; Simon BARON-COHEN, Auteur . - p.2677-2690. Langues : Anglais (eng) in Autism > 29-11 (November 2025) . - p.2677-2690 Mots-clés : autism  mental health  public health  suicide Index. décimale : PER Périodiques Résumé : With autistic people at increased risk of dying by suicide, understanding barriers to help-seeking is crucial for suicide prevention efforts. Using an online survey designed in consultation with autistic people, we examined reasons why autistic adults living in the United Kingdom did not seek help from the National Health Service (NHS) when they last experienced suicidal thoughts or behaviours. Participants who disaffirmed help-seeking from the NHS (n = 754) were able to select from a prepopulated list of 20 reasons why and to enter their own. The three most commonly endorsed reasons were ‘I tried to cope and manage my feelings by myself’, ‘I did not think they could help me’ and ‘The waiting list is too long – no point’. Endorsement of reasons differed significantly with gender identity, age group and degree of lifetime suicidality. Four themes emerged from analysis of free-form responses: NHS is ineffective, NHS as antagonistic, Fear and consequences and Barriers to access. These findings highlight the need to foster more flexible healthcare systems capable of supporting autistic people, and that autistic people view as trustworthy and effective, to enable help-seeking behaviours with the potential to save lives.Lay abstract Autistic people are more likely than non-autistic people to think about, attempt and die by suicide. For people in crisis, public healthcare services are, in theory, a source of help. In reality, many non-autistic people do not seek help from healthcare services. We wanted to understand why autistic people living in the United Kingdom may not seek help from the National Health Service (NHS) when suicidal and if these reasons differed by characteristics like age and gender. This study tried to answer these questions using responses from a survey co-designed with autistic people about various aspects of suicidal experiences. Participants were able to select from a list of 20 reasons and enter their own explanations (free-form responses) why they did not seek NHS support when suicidal. Our findings show that the most common reasons were that people tried to cope and manage by themselves; they did not think the NHS could help; and they thought the waiting list was too long. Reasons for not seeking help differed by age and gender, as well as lifetime history of suicidal thoughts and behaviour. For example, cisgender women and transgender/gender-divergent participants were more likely to say that previous bad experiences with the NHS prevented them from seeking help, and people with experience of suicide attempts were more likely to have been turned away by the NHS in the past. The free-form responses showed that many participants believed the NHS was ineffective, had previously had negative experiences with the NHS, worried about the consequences of help-seeking and experienced barriers that prevented help-seeking. This work highlights the crucial change and work required to make the NHS safe and accessible for autistic people so they can reach out for help when suicidal. En ligne : https://dx.doi.org/10.1177/13623613251370789 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=570

Priorities for change for autistic people across Europe / Siti Nurnadhirah BINTE MOHD IKHSAN in Molecular Autism, 17 (2026)  

Public ISBD [article]  inMolecular Autism > 17 (2026) Titre : Priorities for change for autistic people across Europe Type de document : texte imprimé Auteurs : Siti Nurnadhirah BINTE MOHD IKHSAN, Auteur ; Rosemary HOLT, Auteur ; Amber RUIGROK, Auteur ; Joyce MAN, Auteur ; Tracey PARSONS, Auteur ; Kathryn GIBBS, Auteur ; Edward BULLOCK, Auteur ; Aurélie BARANGER, Auteur ; Carrie ALLISON, Auteur ; Mary DOHERTY, Auteur ; Anjuli GHOSH, Auteur ; Jerneja TERÄŒON, Auteur ; Katrien VAN DEN BOSCH, Auteur ; Simon BARON-COHEN, Auteur Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : 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. En ligne : https://doi.org/10.1186/s13229-026-00706-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=584 [article] Priorities for change for autistic people across Europe [texte imprimé] / Siti Nurnadhirah BINTE MOHD IKHSAN, Auteur ; Rosemary HOLT, Auteur ; Amber RUIGROK, Auteur ; Joyce MAN, Auteur ; Tracey PARSONS, Auteur ; Kathryn GIBBS, Auteur ; Edward BULLOCK, Auteur ; Aurélie BARANGER, Auteur ; Carrie ALLISON, Auteur ; Mary DOHERTY, Auteur ; Anjuli GHOSH, Auteur ; Jerneja TERÄŒON, Auteur ; Katrien VAN DEN BOSCH, Auteur ; Simon BARON-COHEN, Auteur. Langues : Anglais (eng) in Molecular Autism > 17 (2026) Index. décimale : PER Périodiques Résumé : 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. En ligne : https://doi.org/10.1186/s13229-026-00706-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=584

---

1 (1 - 3 / 3) Par page : 25 50 100 200