‘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

(Re)thinking about self-harm and autism: Findings from an online qualitative study on self-harm in autistic adults / Sarah J. MARSDEN in Autism, 29-1 (January 2025)  

Public ISBD [article]  inAutism > 29-1 (January 2025) . - p.247-258 Titre : (Re)thinking about self-harm and autism: Findings from an online qualitative study on self-harm in autistic adults Type de document : texte imprimé Auteurs : Sarah J. MARSDEN, Auteur ; Rachael EASTHAM, Auteur ; Alexandra KALEY, Auteur Article en page(s) : p.247-258 Langues : Anglais (eng) Mots-clés : autism  neurodiversity  online qualitative methodology  self-harm  self-injurious behaviours Index. décimale : PER Périodiques Résumé : Autistic people experience a higher prevalence of self-harming behaviours than do the general population. Self-harm remains a stigmatised topic, and until recently, self-harming behaviours in autism were considered to be limited to self-injurious behaviours experienced by intellectually impaired autistic children and not to be experienced by cognitively able autistic adults. Because of the belief held by many professionals that many mental health-related problems are inherently part of autism and immune to treatment or help, many autistic people are left unable to access the help and support that they desperately need. This study adopts an online qualitative methodology to explore this under-researched phenomenon, thematically analysing online forum posts from autistic adults to determine what forms of self-harm are described, what precipitates the self-harm and how forum users support each other. The findings reveal that self-harming behaviours are nuanced and complex, highlighting the connections between sensory overload, meltdowns, stimming and impulsive repetitive blunt trauma seen as autistic self-injurious behaviours. When seeking help, barriers include navigating misdiagnoses of other mental illnesses and being misunderstood or disbelieved by professionals. Online forum users offer help in the form of emotional empathy, as well as practical solutions, providing an example of valuable peer support.Lay abstractThere is a higher prevalence of self-harming behaviours within the autistic community than is experienced by the general population, in addition to co-occurring mental health conditions such as anxiety and depression. To date, research has focused on quantifying and categorising the numbers of autistic people self-harming, what types of harming they are engaging in and what functions the harming performs. Autism research has historically focused on the opinions and experiences of parents, carers and clinicians, with a belief that autistic people are unable to present their own experiences and thoughts accurately. This study adopted a qualitative method to develop themes arising from online forum discussions, using the words of autistic adults talking about how they experience and understand their self-harming behaviours. The analysis discovered that self-harming behaviours are used by autistic people as a way of coping with anxiety and depression and to relieve the build up of stress and sensory or mental overload that can otherwise lead to a meltdown. Repetitive behaviours such as stimming are also used to relieve the buildup of sensory over-stimulation and anxiety, but both stimming and meltdowns can also be self-harming behaviours if they cause tissue damage, and are believed to be childhood presentations which are stigmatised if expressed by an autistic adult. Many autistic adults find it hard to get help with self-harming behaviours because they are not taken seriously by professionals, as it is seen as part of autism and cannot be helped, or the professionals do not have enough knowledge of autism. En ligne : https://dx.doi.org/10.1177/13623613241271931 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=544 [article] (Re)thinking about self-harm and autism: Findings from an online qualitative study on self-harm in autistic adults [texte imprimé] / Sarah J. MARSDEN, Auteur ; Rachael EASTHAM, Auteur ; Alexandra KALEY, Auteur . - p.247-258. Langues : Anglais (eng) in Autism > 29-1 (January 2025) . - p.247-258 Mots-clés : autism  neurodiversity  online qualitative methodology  self-harm  self-injurious behaviours Index. décimale : PER Périodiques Résumé : Autistic people experience a higher prevalence of self-harming behaviours than do the general population. Self-harm remains a stigmatised topic, and until recently, self-harming behaviours in autism were considered to be limited to self-injurious behaviours experienced by intellectually impaired autistic children and not to be experienced by cognitively able autistic adults. Because of the belief held by many professionals that many mental health-related problems are inherently part of autism and immune to treatment or help, many autistic people are left unable to access the help and support that they desperately need. This study adopts an online qualitative methodology to explore this under-researched phenomenon, thematically analysing online forum posts from autistic adults to determine what forms of self-harm are described, what precipitates the self-harm and how forum users support each other. The findings reveal that self-harming behaviours are nuanced and complex, highlighting the connections between sensory overload, meltdowns, stimming and impulsive repetitive blunt trauma seen as autistic self-injurious behaviours. When seeking help, barriers include navigating misdiagnoses of other mental illnesses and being misunderstood or disbelieved by professionals. Online forum users offer help in the form of emotional empathy, as well as practical solutions, providing an example of valuable peer support.Lay abstractThere is a higher prevalence of self-harming behaviours within the autistic community than is experienced by the general population, in addition to co-occurring mental health conditions such as anxiety and depression. To date, research has focused on quantifying and categorising the numbers of autistic people self-harming, what types of harming they are engaging in and what functions the harming performs. Autism research has historically focused on the opinions and experiences of parents, carers and clinicians, with a belief that autistic people are unable to present their own experiences and thoughts accurately. This study adopted a qualitative method to develop themes arising from online forum discussions, using the words of autistic adults talking about how they experience and understand their self-harming behaviours. The analysis discovered that self-harming behaviours are used by autistic people as a way of coping with anxiety and depression and to relieve the build up of stress and sensory or mental overload that can otherwise lead to a meltdown. Repetitive behaviours such as stimming are also used to relieve the buildup of sensory over-stimulation and anxiety, but both stimming and meltdowns can also be self-harming behaviours if they cause tissue damage, and are believed to be childhood presentations which are stigmatised if expressed by an autistic adult. Many autistic adults find it hard to get help with self-harming behaviours because they are not taken seriously by professionals, as it is seen as part of autism and cannot be helped, or the professionals do not have enough knowledge of autism. En ligne : https://dx.doi.org/10.1177/13623613241271931 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=544

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