How does ‘autistic burnout’ feel? A qualitative study exploring experiences of earlier and later-diagnosed autistic adults / Dorota ALI in Autism, 30-4 (April 2026)  

Public ISBD [article]  inAutism > 30-4 (April 2026) . - p.1014-1027 Titre : How does ‘autistic burnout’ feel? A qualitative study exploring experiences of earlier and later-diagnosed autistic adults Type de document : texte imprimé Auteurs : Dorota ALI, Auteur ; Will MANDY, Auteur ; Francesca HAPPE, Auteur Article en page(s) : p.1014-1027 Langues : Anglais (eng) Mots-clés : autism  autistic burnout  burnout  fatigue  mental health  reflexive thematic analysis Index. décimale : PER Périodiques Résumé : ‘Autistic burnout’ is increasingly conceptualised as an experience of severe exhaustion, increased sensory difficulties and need for solitude, resulting from not having needs met across contexts. We interviewed 20 autistic adults (eight diagnosed with autism in childhood) about their experiences of autistic burnout. In this reflexive thematic analysis, we focused on how burnout felt, comparing the experiences of those diagnosed in childhood versus adulthood. We created five themes. We understood burnout to be, at times, (1) a powering down and/or (2) the overactivation, of the mind and body, resulting in (3) a craving for sensory and social rest. For those diagnosed in adulthood, burnout seemed to be experienced as more chronic and confusing. Some participants diagnosed in adulthood (4) made the world more bearable by using substances, coping with the contributors to and effects of burnout. Especially affecting those diagnosed in adulthood, (5) not knowing why this was happening took a (sometimes dangerous) toll; for a few, it led to contemplating suicide. This study brings new insights into burnout experiences of adults diagnosed with autism at different life points.Lay abstract Some autistic people experience severe exhaustion as a result of not having their needs met that sometimes prevents them from being able to take part in daily life. Some people refer to this as ‘autistic burnout’. In this study, we spoke to 20 autistic adults, eight of whom were diagnosed with autism in childhood. We analysed our participants’ interviews through an approach called reflexive thematic analysis. Through this process, we created five themes around the question of how autistic burnout felt for these participants. We were also interested in how participants diagnosed with autism in childhood versus in adulthood described their burnout experiences. This is because research has shown that not having an autism diagnosis earlier in life could, indirectly, lead to not understanding one’s own needs accurately and not having the right support from others. The five themes we created were (1) the powering down of the mind and body, (2) the overactivation of the mind and body, (3) craving social and sensory rest, (4) making the world more manageable by using substances and (5) not knowing why this is happening to you can take a (sometimes dangerous) toll. Themes 1, 2 and 3 seemed to be shared between participants regardless of age at autism diagnosis. However, these experiences seemed to be more disabling for participants diagnosed in adulthood. Themes 4 and 5 related particularly to those diagnosed with autism in adulthood. This study adds an important insight: perspectives on burnout experiences from adults diagnosed with autism at different life points. En ligne : https://dx.doi.org/10.1177/13623613261422117 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=584 [article] How does ‘autistic burnout’ feel? A qualitative study exploring experiences of earlier and later-diagnosed autistic adults [texte imprimé] / Dorota ALI, Auteur ; Will MANDY, Auteur ; Francesca HAPPE, Auteur . - p.1014-1027. Langues : Anglais (eng) in Autism > 30-4 (April 2026) . - p.1014-1027 Mots-clés : autism  autistic burnout  burnout  fatigue  mental health  reflexive thematic analysis Index. décimale : PER Périodiques Résumé : ‘Autistic burnout’ is increasingly conceptualised as an experience of severe exhaustion, increased sensory difficulties and need for solitude, resulting from not having needs met across contexts. We interviewed 20 autistic adults (eight diagnosed with autism in childhood) about their experiences of autistic burnout. In this reflexive thematic analysis, we focused on how burnout felt, comparing the experiences of those diagnosed in childhood versus adulthood. We created five themes. We understood burnout to be, at times, (1) a powering down and/or (2) the overactivation, of the mind and body, resulting in (3) a craving for sensory and social rest. For those diagnosed in adulthood, burnout seemed to be experienced as more chronic and confusing. Some participants diagnosed in adulthood (4) made the world more bearable by using substances, coping with the contributors to and effects of burnout. Especially affecting those diagnosed in adulthood, (5) not knowing why this was happening took a (sometimes dangerous) toll; for a few, it led to contemplating suicide. This study brings new insights into burnout experiences of adults diagnosed with autism at different life points.Lay abstract Some autistic people experience severe exhaustion as a result of not having their needs met that sometimes prevents them from being able to take part in daily life. Some people refer to this as ‘autistic burnout’. In this study, we spoke to 20 autistic adults, eight of whom were diagnosed with autism in childhood. We analysed our participants’ interviews through an approach called reflexive thematic analysis. Through this process, we created five themes around the question of how autistic burnout felt for these participants. We were also interested in how participants diagnosed with autism in childhood versus in adulthood described their burnout experiences. This is because research has shown that not having an autism diagnosis earlier in life could, indirectly, lead to not understanding one’s own needs accurately and not having the right support from others. The five themes we created were (1) the powering down of the mind and body, (2) the overactivation of the mind and body, (3) craving social and sensory rest, (4) making the world more manageable by using substances and (5) not knowing why this is happening to you can take a (sometimes dangerous) toll. Themes 1, 2 and 3 seemed to be shared between participants regardless of age at autism diagnosis. However, these experiences seemed to be more disabling for participants diagnosed in adulthood. Themes 4 and 5 related particularly to those diagnosed with autism in adulthood. This study adds an important insight: perspectives on burnout experiences from adults diagnosed with autism at different life points. En ligne : https://dx.doi.org/10.1177/13623613261422117 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=584

Personality disorder diagnoses in UK Autistic people: Evidence from a matched cohort study / Elizabeth O’NIONS in Autism, 30-4 (April 2026)  

Public ISBD [article]  inAutism > 30-4 (April 2026) . - p.901-913 Titre : Personality disorder diagnoses in UK Autistic people: Evidence from a matched cohort study Type de document : texte imprimé Auteurs : Elizabeth O’NIONS, Auteur ; Jude BROWN, Auteur ; Joshua E.J. BUCKMAN, Auteur ; Rebecca CHARLTON, Auteur ; Claudia COOPER, Auteur ; Céline EL BAOU, Auteur ; Francesca HAPPE, Auteur ; Sarah HOARE, Auteur ; Dan LEWER, Auteur ; Cathie LONG, Auteur ; Jill MANTHORPE, Auteur ; Douglas G.J. MCKECHNIE, Auteur ; Marcus RICHARDS, Auteur ; Rob SAUNDERS, Auteur ; Will MANDY, Auteur ; Joshua STOTT, Auteur Article en page(s) : p.901-913 Langues : Anglais (eng) Mots-clés : autism  borderline personality disorder  emotionally unstable personality disorder  personality disorder  primary care Index. décimale : PER Périodiques Résumé : Clinical accounts and cohort studies suggest that Autistic people are disproportionately likely to be diagnosed with personality disorder. We conducted a cohort study of adults diagnosed Autistic drawn from the IQVIA Medical Research Database, with follow-up from 1 January 2000 to 16 January 2019. We included a comparison group without diagnosed autism, matched (1:10) by age, sex and primary care practice. We included 22,112 Autistic adults, of whom 6437 (29.1%) had a diagnosis of intellectual disability. Median age was 20.36 (interquartile range: 18.0–28.5), and 16,881 (76.3%) were men. The rate of new personality disorder diagnosis in Autistic people without intellectual disability was 4.8 (3.5–6.7) times higher for Autistic versus comparison men, and 4.6 (3.1–6.8) times higher for Autistic versus comparison women. For Autistic participants with intellectual disability, the rate was 2.0 (1.0–3.7) times higher for Autistic versus comparison men and 8.3 (4.0–17.2) times higher for Autistic versus comparison women. The estimated rate of new personality disorder diagnosis for Autistic people aged 20 increased from 14.67 (95% confidence interval: 10.4–20.8) per 10,000 person-years in 2009 to 22.43 (95% confidence interval: 13.9–36.3) in 2019. The findings indicate that personality disorder diagnoses are more common in Autistic people and increased overall in women from 2000 to 2019.Lay abstract Several research studies have suggested that Autistic people are more likely to be diagnosed with personality disorder than people who are not Autistic. We compared rates of personality disorder diagnoses between Autistic people and a comparison group of people not diagnosed Autistic using anonymised data collected by UK primary care practitioners for participants registered at a primary care (general practitioner) practice sometime between 1 January 2000 to 16 January 2019. The comparison group of people in the community who did not have an autism diagnosis were of the same age, sex and registered at the same primary care practice as their matched Autistic participant, with 10 times as many matched participants as Autistic participants. We included 22,112 Autistic adults, of whom 6437 (29.1%) had a diagnosis of intellectual disability. Median age was 20.36 years, and most, 16,881 (76.3%), were men. We included 221,120 comparison adults. New personality disorder diagnoses were more than four times as common for Autistic men and women without an intellectual disability compared to men and women in the comparison group. For Autistic participants with an intellectual disability, the rate was twice as high for Autistic versus comparison men and 8 times higher for Autistic versus comparison women. Between 2000 and 2019, there was an increase in the rate of new personality disorder diagnoses among Autistic people, and in women. The findings highlight the need for further investigation into reasons for this increase. En ligne : https://dx.doi.org/10.1177/13623613251414911 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=584 [article] Personality disorder diagnoses in UK Autistic people: Evidence from a matched cohort study [texte imprimé] / Elizabeth O’NIONS, Auteur ; Jude BROWN, Auteur ; Joshua E.J. BUCKMAN, Auteur ; Rebecca CHARLTON, Auteur ; Claudia COOPER, Auteur ; Céline EL BAOU, Auteur ; Francesca HAPPE, Auteur ; Sarah HOARE, Auteur ; Dan LEWER, Auteur ; Cathie LONG, Auteur ; Jill MANTHORPE, Auteur ; Douglas G.J. MCKECHNIE, Auteur ; Marcus RICHARDS, Auteur ; Rob SAUNDERS, Auteur ; Will MANDY, Auteur ; Joshua STOTT, Auteur . - p.901-913. Langues : Anglais (eng) in Autism > 30-4 (April 2026) . - p.901-913 Mots-clés : autism  borderline personality disorder  emotionally unstable personality disorder  personality disorder  primary care Index. décimale : PER Périodiques Résumé : Clinical accounts and cohort studies suggest that Autistic people are disproportionately likely to be diagnosed with personality disorder. We conducted a cohort study of adults diagnosed Autistic drawn from the IQVIA Medical Research Database, with follow-up from 1 January 2000 to 16 January 2019. We included a comparison group without diagnosed autism, matched (1:10) by age, sex and primary care practice. We included 22,112 Autistic adults, of whom 6437 (29.1%) had a diagnosis of intellectual disability. Median age was 20.36 (interquartile range: 18.0–28.5), and 16,881 (76.3%) were men. The rate of new personality disorder diagnosis in Autistic people without intellectual disability was 4.8 (3.5–6.7) times higher for Autistic versus comparison men, and 4.6 (3.1–6.8) times higher for Autistic versus comparison women. For Autistic participants with intellectual disability, the rate was 2.0 (1.0–3.7) times higher for Autistic versus comparison men and 8.3 (4.0–17.2) times higher for Autistic versus comparison women. The estimated rate of new personality disorder diagnosis for Autistic people aged 20 increased from 14.67 (95% confidence interval: 10.4–20.8) per 10,000 person-years in 2009 to 22.43 (95% confidence interval: 13.9–36.3) in 2019. The findings indicate that personality disorder diagnoses are more common in Autistic people and increased overall in women from 2000 to 2019.Lay abstract Several research studies have suggested that Autistic people are more likely to be diagnosed with personality disorder than people who are not Autistic. We compared rates of personality disorder diagnoses between Autistic people and a comparison group of people not diagnosed Autistic using anonymised data collected by UK primary care practitioners for participants registered at a primary care (general practitioner) practice sometime between 1 January 2000 to 16 January 2019. The comparison group of people in the community who did not have an autism diagnosis were of the same age, sex and registered at the same primary care practice as their matched Autistic participant, with 10 times as many matched participants as Autistic participants. We included 22,112 Autistic adults, of whom 6437 (29.1%) had a diagnosis of intellectual disability. Median age was 20.36 years, and most, 16,881 (76.3%), were men. We included 221,120 comparison adults. New personality disorder diagnoses were more than four times as common for Autistic men and women without an intellectual disability compared to men and women in the comparison group. For Autistic participants with an intellectual disability, the rate was twice as high for Autistic versus comparison men and 8 times higher for Autistic versus comparison women. Between 2000 and 2019, there was an increase in the rate of new personality disorder diagnoses among Autistic people, and in women. The findings highlight the need for further investigation into reasons for this increase. En ligne : https://dx.doi.org/10.1177/13623613251414911 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=584

The healthcare experiences of middle and older age autistic women in the United Kingdom / Amy GILLIONS in Autism, 30-1 (January 2026)  

Public ISBD [article]  inAutism > 30-1 (January 2026) . - p.49-60 Titre : The healthcare experiences of middle and older age autistic women in the United Kingdom Type de document : texte imprimé Auteurs : Amy GILLIONS, Auteur ; Elizabeth O’NIONS, Auteur ; Hassan MANSOUR, Auteur ; Sarah HOARE, Auteur ; Will MANDY, Auteur ; Joshua STOTT, Auteur Article en page(s) : p.49-60 Langues : Anglais (eng) Mots-clés : autism  autistic women  healthcare experience  older adults Index. décimale : PER Périodiques Résumé : Autistic women experience a higher prevalence of physical and mental health conditions compared with autistic men and non-autistic women, plus greater premature mortality and a higher suicide risk. However, little is known about autistic women’s experiences of healthcare, particularly in middle and later life. We aimed to explore autistic women’s perspectives on accessing healthcare services in the United Kingdom. Fifteen autistic women aged between 51 and 73 years participated in semi-structured interviews, which were analysed using reflexive thematic analysis. Four main themes were generated: (1) Stigma and stereotypes in professionals’ understanding of autism leading to poor-quality care, (2) Accumulation of negative healthcare experiences reducing participants’ confidence in services, (3) Efforts required to navigate healthcare systems and (4) The future: age-related concerns and hopes for change. The autistic women in this study reported multiple barriers to accessing healthcare and they felt stigmatised by repeated negative interactions with healthcare providers. Intersections between age and gender affected how participants felt they were perceived in healthcare settings; specifically, participants felt that being an older woman contributed to their autism-related needs being overlooked or misunderstood. Implications for services and directions for future research are discussed.Lay abstract Why was the study done and what did the researchers do?Autistic women face distinctive healthcare challenges compared with autistic men and non-autistic women. However, there is not much information about their experiences with healthcare in the UK, especially as they age. To better understand the lived experiences of this population, the research team in this study interviewed 15 autistic women in middle to later life about their healthcare experiences. Information from the interviews was analysed by creating themes based on what the participants had reported.What did the researchers find?Four main themes came out of the analysis.1. Participants expressed concerns that stigma and stereotypes associated with autism led to poor healthcare experiences.2. Participants’ confidence in seeking help was affected by having many negative experiences across their lives. Difficult interactions with healthcare providers also made them less confident in seeking help.3. Navigating the healthcare system was a challenge for participants.4. Participants thought a lot about the future. They had worries about ageing and what consequences this might have on their health and support needs. They also shared hopes for better healthcare in the future.What do the findings mean?The findings highlight that autistic women in middle to later life face many barriers in accessing healthcare. The study emphasises the need for better understanding and support for autistic women in healthcare settings. En ligne : https://dx.doi.org/10.1177/13623613251362265 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=578 [article] The healthcare experiences of middle and older age autistic women in the United Kingdom [texte imprimé] / Amy GILLIONS, Auteur ; Elizabeth O’NIONS, Auteur ; Hassan MANSOUR, Auteur ; Sarah HOARE, Auteur ; Will MANDY, Auteur ; Joshua STOTT, Auteur . - p.49-60. Langues : Anglais (eng) in Autism > 30-1 (January 2026) . - p.49-60 Mots-clés : autism  autistic women  healthcare experience  older adults Index. décimale : PER Périodiques Résumé : Autistic women experience a higher prevalence of physical and mental health conditions compared with autistic men and non-autistic women, plus greater premature mortality and a higher suicide risk. However, little is known about autistic women’s experiences of healthcare, particularly in middle and later life. We aimed to explore autistic women’s perspectives on accessing healthcare services in the United Kingdom. Fifteen autistic women aged between 51 and 73 years participated in semi-structured interviews, which were analysed using reflexive thematic analysis. Four main themes were generated: (1) Stigma and stereotypes in professionals’ understanding of autism leading to poor-quality care, (2) Accumulation of negative healthcare experiences reducing participants’ confidence in services, (3) Efforts required to navigate healthcare systems and (4) The future: age-related concerns and hopes for change. The autistic women in this study reported multiple barriers to accessing healthcare and they felt stigmatised by repeated negative interactions with healthcare providers. Intersections between age and gender affected how participants felt they were perceived in healthcare settings; specifically, participants felt that being an older woman contributed to their autism-related needs being overlooked or misunderstood. Implications for services and directions for future research are discussed.Lay abstract Why was the study done and what did the researchers do?Autistic women face distinctive healthcare challenges compared with autistic men and non-autistic women. However, there is not much information about their experiences with healthcare in the UK, especially as they age. To better understand the lived experiences of this population, the research team in this study interviewed 15 autistic women in middle to later life about their healthcare experiences. Information from the interviews was analysed by creating themes based on what the participants had reported.What did the researchers find?Four main themes came out of the analysis.1. Participants expressed concerns that stigma and stereotypes associated with autism led to poor healthcare experiences.2. Participants’ confidence in seeking help was affected by having many negative experiences across their lives. Difficult interactions with healthcare providers also made them less confident in seeking help.3. Navigating the healthcare system was a challenge for participants.4. Participants thought a lot about the future. They had worries about ageing and what consequences this might have on their health and support needs. They also shared hopes for better healthcare in the future.What do the findings mean?The findings highlight that autistic women in middle to later life face many barriers in accessing healthcare. The study emphasises the need for better understanding and support for autistic women in healthcare settings. En ligne : https://dx.doi.org/10.1177/13623613251362265 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=578

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