Barriers to healthcare and a 'triple empathy problem' may lead to adverse outcomes for autistic adults: A qualitative study / Laura CARRAVALLAH ; Mona JOHNSON ; Jane O'SULLIVAN ; Nicholas CHOWN ; Stuart NEILSON ; Mary DOHERTY in Autism, 28-7 (July 2024)  

Public ISBD [article]  inAutism > 28-7 (July 2024) . - p.1746-1757 Titre : Barriers to healthcare and a 'triple empathy problem' may lead to adverse outcomes for autistic adults: A qualitative study Type de document : texte imprimé Auteurs : Laura CARRAVALLAH, Auteur ; Mona JOHNSON, Auteur ; Jane O'SULLIVAN, Auteur ; Nicholas CHOWN, Auteur ; Stuart NEILSON, Auteur ; Mary DOHERTY, Auteur Article en page(s) : p.1746-1757 Langues : Anglais (eng) Mots-clés : adults  autism  autistic  epistemic injustice  healthcare  health services  insider research  minority stress theory  qualitative research  triple empathy problem Index. décimale : PER Périodiques Résumé : Autistic people experience more co-occurring health conditions and, on average, die younger than non-autistic people. Despite growing awareness of health inequities, autistic people still report barriers to accessing healthcare. We aimed to explore the experiences of autistic people accessing healthcare, shining a light on the complex interplay of relevant factors and to explain, at least in part, the possible reasons underling health disparities and adverse health outcomes. This is a qualitative study from an autistic research team. Data were collected from 1248 autistic adults as part of a large, mixed-methods, international survey exploring barriers to primary healthcare. This article reports the qualitative findings, following a thematic analysis. Using our exploratory findings, we then constructed a model to explain the reported experiences. Respondents reported a variety of barriers. Here, our article gives voice to their stories, in their own words. Themes included: early barriers; communication mismatch; doubt - in oneself and from doctors; helplessness and fear; and healthcare avoidance and serious adverse health outcomes. Our constructed model outlines a chronological journey through which healthcare access barriers may lead to adverse health outcomes. Our findings also build on the double empathy problem, situating this in a medical context, proposing a triple empathy problem. Lay abstract Autistic people live with more mental and physical health conditions and, on average, die younger than non-autistic people. Despite widespread commitments to tackling these issues, autistic people still report various barriers to accessing healthcare. This article aims to explore the area in depth, from the perspective of autistic people. This research benefits from being led by autistic people, for autistic people - all of the researchers are autistic, and most of us are also medical doctors. Data, in the form of written comments and stories, were collected as part of a large survey. Here, we explored these for common themes and possible deeper meaning within the experiences. People who took part reported a variety of barriers. Here, our article gives voice to their stories, in their own words. Themes included: early barriers; communication mismatch; doubt - in oneself and from doctors; helplessness and fear; and healthcare avoidance and adverse health outcomes. Our findings allowed us to create a model that aimed to understand and explain the reported barriers in the context of the previously known consequences. We also built on wider autism theories to explain our findings in more depth. En ligne : https://dx.doi.org/10.1177/13623613231205629 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531 [article] Barriers to healthcare and a 'triple empathy problem' may lead to adverse outcomes for autistic adults: A qualitative study [texte imprimé] / Laura CARRAVALLAH, Auteur ; Mona JOHNSON, Auteur ; Jane O'SULLIVAN, Auteur ; Nicholas CHOWN, Auteur ; Stuart NEILSON, Auteur ; Mary DOHERTY, Auteur . - p.1746-1757. Langues : Anglais (eng) in Autism > 28-7 (July 2024) . - p.1746-1757 Mots-clés : adults  autism  autistic  epistemic injustice  healthcare  health services  insider research  minority stress theory  qualitative research  triple empathy problem Index. décimale : PER Périodiques Résumé : Autistic people experience more co-occurring health conditions and, on average, die younger than non-autistic people. Despite growing awareness of health inequities, autistic people still report barriers to accessing healthcare. We aimed to explore the experiences of autistic people accessing healthcare, shining a light on the complex interplay of relevant factors and to explain, at least in part, the possible reasons underling health disparities and adverse health outcomes. This is a qualitative study from an autistic research team. Data were collected from 1248 autistic adults as part of a large, mixed-methods, international survey exploring barriers to primary healthcare. This article reports the qualitative findings, following a thematic analysis. Using our exploratory findings, we then constructed a model to explain the reported experiences. Respondents reported a variety of barriers. Here, our article gives voice to their stories, in their own words. Themes included: early barriers; communication mismatch; doubt - in oneself and from doctors; helplessness and fear; and healthcare avoidance and serious adverse health outcomes. Our constructed model outlines a chronological journey through which healthcare access barriers may lead to adverse health outcomes. Our findings also build on the double empathy problem, situating this in a medical context, proposing a triple empathy problem. Lay abstract Autistic people live with more mental and physical health conditions and, on average, die younger than non-autistic people. Despite widespread commitments to tackling these issues, autistic people still report various barriers to accessing healthcare. This article aims to explore the area in depth, from the perspective of autistic people. This research benefits from being led by autistic people, for autistic people - all of the researchers are autistic, and most of us are also medical doctors. Data, in the form of written comments and stories, were collected as part of a large survey. Here, we explored these for common themes and possible deeper meaning within the experiences. People who took part reported a variety of barriers. Here, our article gives voice to their stories, in their own words. Themes included: early barriers; communication mismatch; doubt - in oneself and from doctors; helplessness and fear; and healthcare avoidance and adverse health outcomes. Our findings allowed us to create a model that aimed to understand and explain the reported barriers in the context of the previously known consequences. We also built on wider autism theories to explain our findings in more depth. En ligne : https://dx.doi.org/10.1177/13623613231205629 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531

“Tell Me What My Job Is”: A Qualitative Exploration of the Experiences of Autistic Academic Staff Working in Higher Education in Ireland / Neil KENNY in Autism, 30-7 (July 2026)  

Public ISBD [article]  inAutism > 30-7 (July 2026) . - p.1724-1737 Titre : “Tell Me What My Job Is”: A Qualitative Exploration of the Experiences of Autistic Academic Staff Working in Higher Education in Ireland Type de document : texte imprimé Auteurs : Neil KENNY, Auteur ; Alison DOYLE, Auteur ; Claire O’NEILL, Auteur ; Jessica K. DOYLE, Auteur ; Jane O’KELLY, Auteur ; Fiona EARLEY, Auteur ; Stuart NEILSON, Auteur Article en page(s) : p.1724-1737 Langues : Anglais (eng) Mots-clés : academics  autism  higher education  neurodiversity  space  workplace inclusion Index. décimale : PER Périodiques Résumé : This co-produced study explores the experiences of autistic staff working in higher education in Ireland, a group largely overlooked in existing research. While much attention has been given to autistic students, little research has explored how autistic academics navigate their professional roles. This study investigates the challenges and strengths autistic staff encounter within academic environments. Eleven autistic participants took part in semi-structured interviews, conducted flexibly to respect individual preferences and communication needs. Data were analysed using the Reflexive Thematic Analysis. Four key themes emerged: (1) Discovering being autistic, (2) Role ambiguity and institutional invisibility, (3) Stress, burnout, and workplace unpredictability, and (4) Autistic strengths. Participants described strengths such as hyper-focus, problem-solving, and deep commitment to teaching while also highlighting barriers such as unclear expectations, a lack of visibility, and high emotional labour. The findings underscore the need for more inclusive institutional practices that reduce the pressure to mask and protect against burnout. Supporting autistic staff through affirming environments not only enables individuals to thrive but also enriches the wider educational community by fostering diverse approaches to teaching, learning, and communication.Lay Abstract This study explores the experiences of autistic people who work as academic staff in universities. Autistic staff often face challenges such as unclear job expectations, misunderstandings from colleagues, and barriers to being open about their identity. Through interviews, we learned that many autistic academics care deeply about their work but feel unsupported in environments that reward constant social interaction, speed, and competition. Despite this, participants found creative ways to make space for themselves and others. This research helps us understand what autistic staff need to thrive in universities and shows why workplaces should value different ways of thinking, working, and communicating. Making these changes could benefit not only autistic staff but the wider academic community as well. En ligne : https://dx.doi.org/10.1177/13623613261440799 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=590 [article] “Tell Me What My Job Is”: A Qualitative Exploration of the Experiences of Autistic Academic Staff Working in Higher Education in Ireland [texte imprimé] / Neil KENNY, Auteur ; Alison DOYLE, Auteur ; Claire O’NEILL, Auteur ; Jessica K. DOYLE, Auteur ; Jane O’KELLY, Auteur ; Fiona EARLEY, Auteur ; Stuart NEILSON, Auteur . - p.1724-1737. Langues : Anglais (eng) in Autism > 30-7 (July 2026) . - p.1724-1737 Mots-clés : academics  autism  higher education  neurodiversity  space  workplace inclusion Index. décimale : PER Périodiques Résumé : This co-produced study explores the experiences of autistic staff working in higher education in Ireland, a group largely overlooked in existing research. While much attention has been given to autistic students, little research has explored how autistic academics navigate their professional roles. This study investigates the challenges and strengths autistic staff encounter within academic environments. Eleven autistic participants took part in semi-structured interviews, conducted flexibly to respect individual preferences and communication needs. Data were analysed using the Reflexive Thematic Analysis. Four key themes emerged: (1) Discovering being autistic, (2) Role ambiguity and institutional invisibility, (3) Stress, burnout, and workplace unpredictability, and (4) Autistic strengths. Participants described strengths such as hyper-focus, problem-solving, and deep commitment to teaching while also highlighting barriers such as unclear expectations, a lack of visibility, and high emotional labour. The findings underscore the need for more inclusive institutional practices that reduce the pressure to mask and protect against burnout. Supporting autistic staff through affirming environments not only enables individuals to thrive but also enriches the wider educational community by fostering diverse approaches to teaching, learning, and communication.Lay Abstract This study explores the experiences of autistic people who work as academic staff in universities. Autistic staff often face challenges such as unclear job expectations, misunderstandings from colleagues, and barriers to being open about their identity. Through interviews, we learned that many autistic academics care deeply about their work but feel unsupported in environments that reward constant social interaction, speed, and competition. Despite this, participants found creative ways to make space for themselves and others. This research helps us understand what autistic staff need to thrive in universities and shows why workplaces should value different ways of thinking, working, and communicating. Making these changes could benefit not only autistic staff but the wider academic community as well. En ligne : https://dx.doi.org/10.1177/13623613261440799 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=590

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