« Je ne pensais pas qu'ils pouvaient m'aider » : raisons pour lesquelles les adultes autistes n'ont pas sollicité les soins de santé publics lorsqu'ils ont vécu pour la dernière fois une suicidalité

Titre original en anglais : ‘I did not think they could help me’: Autistic adults’ reasons for not seeking public healthcare when they last experienced suicidality

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Procyshyn, T. L., Moseley, R., Marsden, S. J., Allison, C., Parsons, T., Cassidy, S., Pelton, M., Weir, E. M., Chikaura, T., Hodges, H., Mosse, D., Hall, I., Owens, L., Cheyette, J., Crichton, D., Rodgers, J., & Baron-Cohen, S. (2025). ‘I did not think they could help me’: Autistic adults’ reasons for not seeking public healthcare when they last experienced suicidality. Autism, 29(11), 2677-2690. https://doi.org/10.1177/13623613251370789

Date de publication: 15/09/2025 Ajout dans AutiHub: 06/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
17
Auteur·ices de la publication identifié·es comme autistes
1 / 17 (5,9 %)
  1. Tanya L Procyshyn
  2. Rachel Moseley *
  3. Sarah J Marsden
  4. Carrie Allison
  5. Tracey Parsons
  6. Sarah Cassidy
  1. Mirabel Pelton
  2. Elizabeth M Weir
  3. Tanatswa Chikaura
  4. Holly Hodges
  5. Davis Mosse
  6. Ian Hall
  1. Lewis Owens
  2. Jon Cheyette
  3. David Crichton
  4. Jacqui Rodgers
  5. Simon Baron-Cohen

Résumé

Les personnes autistes présentant un risque accru de mourir par suicide, il est crucial de comprendre les obstacles à la recherche d'aide pour les efforts de prévention du suicide. À l'aide d'une enquête en ligne conçue en consultation avec des personnes autistes, nous avons examiné les raisons pour lesquelles des adultes autistes vivant au Royaume-Uni n'ont pas sollicité l'aide du National Health Service (NHS) lorsqu'ils ont vécu pour la dernière fois des pensées ou des comportements suicidaires. Les participants qui ont indiqué ne pas avoir sollicité l'aide du NHS (n = 754) pouvaient sélectionner, parmi une liste préremplie, 20 raisons expliquant ce choix et saisir leurs propres raisons. Les trois raisons les plus fréquemment retenues étaient « J'ai essayé de faire face et de gérer mes sentiments par moi-même », « Je ne pensais pas qu'ils pouvaient m'aider » et « La liste d'attente est trop longue, cela ne sert à rien ». L'adhésion aux raisons différait significativement selon l'identité de genre, le groupe d'âge et le degré de suicidalité au cours de la vie. Quatre thèmes ont émergé de l'analyse des réponses libres : le NHS est inefficace, le NHS est antagoniste, la peur et les conséquences, et les obstacles à l'accès. Ces résultats soulignent la nécessité de favoriser des systèmes de soins de santé plus flexibles, capables de soutenir les personnes autistes et que les personnes autistes considèrent comme dignes de confiance et efficaces, afin de permettre des comportements de recherche d'aide susceptibles de sauver des vies. Résumé grand public Les personnes autistes sont plus susceptibles que les personnes non autistes de penser au suicide, de faire une tentative de suicide et de mourir par suicide. Pour les personnes en crise, les services de soins de santé publics sont, en théorie, une source d'aide. En réalité, de nombreuses personnes non autistes ne sollicitent pas l'aide des services de soins de santé. Nous voulions comprendre pourquoi les personnes autistes vivant au Royaume-Uni pourraient ne pas solliciter l'aide du National Health Service (NHS) lorsqu'elles sont suicidaires et si ces raisons différaient selon des caractéristiques telles que l'âge et le genre. Cette étude a tenté de répondre à ces questions à l'aide des réponses à une enquête coconçue avec des personnes autistes sur divers aspects des expériences suicidaires. Les participants pouvaient sélectionner dans une liste de 20 raisons et saisir leurs propres explications (réponses libres) concernant les raisons pour lesquelles ils n'avaient pas sollicité le soutien du NHS lorsqu'ils étaient suicidaires. Nos résultats montrent que les raisons les plus fréquentes étaient que les personnes essayaient de faire face et de gérer la situation par elles-mêmes ; qu'elles ne pensaient pas que le NHS pouvait les aider ; et qu'elles pensaient que la liste d'attente était trop longue. Les raisons de ne pas solliciter d'aide différaient selon l'âge et le genre, ainsi que selon les antécédents de pensées et de comportements suicidaires au cours de la vie. Par exemple, les femmes cisgenres et les participants transgenres ou de genre divergent étaient plus susceptibles de dire que de mauvaises expériences antérieures avec le NHS les avaient empêchés de solliciter de l'aide, et les personnes ayant vécu des tentatives de suicide étaient plus susceptibles d'avoir été refusées par le NHS dans le passé. Les réponses libres ont montré que de nombreux participants considéraient le NHS comme inefficace, avaient auparavant vécu des expériences négatives avec le NHS, s'inquiétaient des conséquences de la recherche d'aide et rencontraient des obstacles empêchant la recherche d'aide. Ce travail souligne le changement crucial et le travail nécessaires pour rendre le NHS sûr et accessible aux personnes autistes afin qu'elles puissent demander de l'aide lorsqu'elles sont suicidaires.

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.

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 11:31.

Références citées
65
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
6 / 65 (9,2 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
15 / 414 (3,6 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 15 / 108 (13,9 %). Auteurices cité·es distinct·es identifié·es comme autistes : 14 / 359 (3,9 %).
Occurrences citées rattachées à la base AutiHub
108 / 414 (26,1 %)
Auteurices cité·es distinct·es rattaché·es : 78 / 359 (21,7 %)
Occurrences rattachées, non identifiées comme autistes
93 / 108 (86,1 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 93 / 414 (22,5 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 64 / 78 (82,1 %).
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