Co-design of an NHS primary care health check for autistic adults / Helen TAYLOR in Autism, 27-4 (May 2023)  

Public ISBD [article]  inAutism > 27-4 (May 2023) . - p.1079-1091 Titre : Co-design of an NHS primary care health check for autistic adults Type de document : Texte imprimé et/ou numérique Auteurs : Helen TAYLOR, Auteur ; Barry INGHAM, Auteur ; David MASON, Auteur ; Tracy FINCH, Auteur ; Colin WILSON, Auteur ; Clare SCARLETT, Auteur ; Sebastian MOSS, Auteur ; Carole BUCKLEY, Auteur ; Anna URBANOWICZ, Auteur ; Dora RAYMAKER, Auteur ; Charlotte SEIBOTH, Auteur ; Rhianna LEES, Auteur ; Deborah GARLAND, Auteur ; Malcolm OSBOURNE, Auteur ; Nicholas LENNOX, Auteur ; Sally-Ann COOPER, Auteur ; Christina NICOLAIDIS, Auteur ; Jeremy R PARR, Auteur Article en page(s) : p.1079-1091 Langues : Anglais (eng) Mots-clés : autism,autism spectrum disorders,health check,health services,qualitative research Index. décimale : PER Périodiques Résumé : Autistic people experience more health conditions and earlier mortality. This study investigated views about a primary care health check for autistic adults to inform its design. Fifty-one people participated in consultation groups and interviews, comprising autistic adults (some with co-occurring intellectual disabilities), adults with intellectual disabilities, supporters and health professionals. Participants wanted the health check to cover physical and mental health and social functioning. They emphasised the importance of sharing information about individual needs and associated adjustments before the health check. They highlighted the need to change the way healthcare services communicate with autistic people, such as reducing phone contact and booking appointments online. They wanted individual choice in how the health check was completed, with video call or email offered alongside face-to-face. Participants raised the need for further training of primary care staff on autism, to highlight the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently. Clinicians raised questions about the capacity of mental health and social care services to meet the additional needs potentially identified through the health check. This study represents a key step in the development and co-design of a UK primary care health check for autistic people.Lay abstractAutistic people are on average more likely to experience poor health than people who are not autistic. Health checks have been shown to improve access to effective healthcare. This study investigated people?s views about a primary care health check for autistic adults. We held discussion groups and interviewed autistic adults, adults with intellectual disabilities, supporters and health professionals. People wanted the health check to look at a person?s physical and mental health, and how they were doing socially. They thought people should be able to share information about their needs and the reasonable adjustments they would like before the health check. They wanted healthcare services to change the way they communicate with autistic people, such as being able to book appointments online rather than by telephone. They wanted a choice in how the health check was completed, with video call or email offered as well as face-to-face appointments. People thought further training of primary care staff on autism was needed, to increase awareness of the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently to non-autistic people. Clinicians raised questions about whether mental health and social care services could meet the additional needs that might be identified through the health check. We used this information to design an NHS primary care health check for autistic people in collaboration with autistic people, supporters and health professionals. En ligne : https://doi.org/10.1177/13623613221132921 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Co-design of an NHS primary care health check for autistic adults [Texte imprimé et/ou numérique] / Helen TAYLOR, Auteur ; Barry INGHAM, Auteur ; David MASON, Auteur ; Tracy FINCH, Auteur ; Colin WILSON, Auteur ; Clare SCARLETT, Auteur ; Sebastian MOSS, Auteur ; Carole BUCKLEY, Auteur ; Anna URBANOWICZ, Auteur ; Dora RAYMAKER, Auteur ; Charlotte SEIBOTH, Auteur ; Rhianna LEES, Auteur ; Deborah GARLAND, Auteur ; Malcolm OSBOURNE, Auteur ; Nicholas LENNOX, Auteur ; Sally-Ann COOPER, Auteur ; Christina NICOLAIDIS, Auteur ; Jeremy R PARR, Auteur . - p.1079-1091. Langues : Anglais (eng) in Autism > 27-4 (May 2023) . - p.1079-1091 Mots-clés : autism,autism spectrum disorders,health check,health services,qualitative research Index. décimale : PER Périodiques Résumé : Autistic people experience more health conditions and earlier mortality. This study investigated views about a primary care health check for autistic adults to inform its design. Fifty-one people participated in consultation groups and interviews, comprising autistic adults (some with co-occurring intellectual disabilities), adults with intellectual disabilities, supporters and health professionals. Participants wanted the health check to cover physical and mental health and social functioning. They emphasised the importance of sharing information about individual needs and associated adjustments before the health check. They highlighted the need to change the way healthcare services communicate with autistic people, such as reducing phone contact and booking appointments online. They wanted individual choice in how the health check was completed, with video call or email offered alongside face-to-face. Participants raised the need for further training of primary care staff on autism, to highlight the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently. Clinicians raised questions about the capacity of mental health and social care services to meet the additional needs potentially identified through the health check. This study represents a key step in the development and co-design of a UK primary care health check for autistic people.Lay abstractAutistic people are on average more likely to experience poor health than people who are not autistic. Health checks have been shown to improve access to effective healthcare. This study investigated people?s views about a primary care health check for autistic adults. We held discussion groups and interviewed autistic adults, adults with intellectual disabilities, supporters and health professionals. People wanted the health check to look at a person?s physical and mental health, and how they were doing socially. They thought people should be able to share information about their needs and the reasonable adjustments they would like before the health check. They wanted healthcare services to change the way they communicate with autistic people, such as being able to book appointments online rather than by telephone. They wanted a choice in how the health check was completed, with video call or email offered as well as face-to-face appointments. People thought further training of primary care staff on autism was needed, to increase awareness of the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently to non-autistic people. Clinicians raised questions about whether mental health and social care services could meet the additional needs that might be identified through the health check. We used this information to design an NHS primary care health check for autistic people in collaboration with autistic people, supporters and health professionals. En ligne : https://doi.org/10.1177/13623613221132921 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

Decision-making in autism: A narrative review / Elisa VAN DER PLAS in Autism, 27-6 (August 2023)  

Public ISBD [article]  inAutism > 27-6 (August 2023) . - p.1532-1546 Titre : Decision-making in autism: A narrative review Type de document : Texte imprimé et/ou numérique Auteurs : Elisa VAN DER PLAS, Auteur ; David MASON, Auteur ; Francesca HAPPE, Auteur Article en page(s) : p.1532-1546 Langues : Anglais (eng) Mots-clés : autism spectrum condition;mentalising;metacognition;perceptual decision-making Index. décimale : PER Périodiques Résumé : Autistic people often have an atypical profile of abilities: while excelling in some structured paradigms, many report difficulties with making real-life decisions. To test whether decision-making in autism is different from in typically developing controls, we reviewed 104 studies that compared decision-making performance between autistic and comparison participants (N=2712 autistic and N=3189 comparison participants) between 1998 and 2022. Our searches revealed four main decision-making paradigms that are widely used in the field of decision neuroscience: perceptual discrimination, reward learning, metacognition and value-based decision-making paradigm. Our synthesis highlights that perceptual processing and reward learning were similar between autistic and comparison participants, whereas value-based decision-making and metacognitive accuracy were often different between groups. Furthermore, decision-making differences were most pronounced when the autistic participant was explicitly probed to report on an internal belief, while implicit markers of the same decision (e.g. error-related response times) were usually not different. Our findings provide evidence in favour of a metacognitive explanation of decision-making atypicalities in autism.Lay summaryMany autistic people report difficulties with real-life decision-making. However, when doing decision-making tests in laboratory experiments, autistic people often perform as well or better than non-autistic people. We review previously published studies on autistic people?s decision-making, across different types of tests, to understand what type of decision-making is more challenging. To do this, we searched four databases of research papers. We found 104 studies that tested, in total, 2712 autistic and 3189 comparison participants on different decision-making tasks. We found that there were four categories of decision-making tests that were used in these experiments: perceptual (e.g. deciding which image has the most dots); reward learning (e.g. learning which deck of cards gives the best reward); metacognition (e.g. knowing how well you perform or what you want); and value-based (e.g. making a decision based on a choice between two outcomes that differ in value to you). Overall, these studies suggest that autistic and comparison participants tend to perform similarly well at perceptual and reward-learning decisions. However, autistic participants tended to decide differently from comparison participants on metacognition and value-based paradigms. This suggests that autistic people might differ from typically developing controls in how they evaluate their own performance and in how they make decisions based on weighing up the subjective value of two different options. We suggest these reflect more general differences in metacognition, thinking about thinking, in autism. En ligne : http://dx.doi.org/10.1177/13623613221148010 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=509 [article] Decision-making in autism: A narrative review [Texte imprimé et/ou numérique] / Elisa VAN DER PLAS, Auteur ; David MASON, Auteur ; Francesca HAPPE, Auteur . - p.1532-1546. Langues : Anglais (eng) in Autism > 27-6 (August 2023) . - p.1532-1546 Mots-clés : autism spectrum condition;mentalising;metacognition;perceptual decision-making Index. décimale : PER Périodiques Résumé : Autistic people often have an atypical profile of abilities: while excelling in some structured paradigms, many report difficulties with making real-life decisions. To test whether decision-making in autism is different from in typically developing controls, we reviewed 104 studies that compared decision-making performance between autistic and comparison participants (N=2712 autistic and N=3189 comparison participants) between 1998 and 2022. Our searches revealed four main decision-making paradigms that are widely used in the field of decision neuroscience: perceptual discrimination, reward learning, metacognition and value-based decision-making paradigm. Our synthesis highlights that perceptual processing and reward learning were similar between autistic and comparison participants, whereas value-based decision-making and metacognitive accuracy were often different between groups. Furthermore, decision-making differences were most pronounced when the autistic participant was explicitly probed to report on an internal belief, while implicit markers of the same decision (e.g. error-related response times) were usually not different. Our findings provide evidence in favour of a metacognitive explanation of decision-making atypicalities in autism.Lay summaryMany autistic people report difficulties with real-life decision-making. However, when doing decision-making tests in laboratory experiments, autistic people often perform as well or better than non-autistic people. We review previously published studies on autistic people?s decision-making, across different types of tests, to understand what type of decision-making is more challenging. To do this, we searched four databases of research papers. We found 104 studies that tested, in total, 2712 autistic and 3189 comparison participants on different decision-making tasks. We found that there were four categories of decision-making tests that were used in these experiments: perceptual (e.g. deciding which image has the most dots); reward learning (e.g. learning which deck of cards gives the best reward); metacognition (e.g. knowing how well you perform or what you want); and value-based (e.g. making a decision based on a choice between two outcomes that differ in value to you). Overall, these studies suggest that autistic and comparison participants tend to perform similarly well at perceptual and reward-learning decisions. However, autistic participants tended to decide differently from comparison participants on metacognition and value-based paradigms. This suggests that autistic people might differ from typically developing controls in how they evaluate their own performance and in how they make decisions based on weighing up the subjective value of two different options. We suggest these reflect more general differences in metacognition, thinking about thinking, in autism. En ligne : http://dx.doi.org/10.1177/13623613221148010 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=509

How to improve healthcare for autistic people: A qualitative study of the views of autistic people and clinicians / David MASON in Autism, 25-3 (April 2021)  

Public ISBD [article]  inAutism > 25-3 (April 2021) . - p.774-785 Titre : How to improve healthcare for autistic people: A qualitative study of the views of autistic people and clinicians Type de document : Texte imprimé et/ou numérique Auteurs : David MASON, Auteur ; Barry INGHAM, Auteur ; Heather BIRTLES, Auteur ; Cos MICHAEL, Auteur ; Clare SCARLETT, Auteur ; Ian A. JAMES, Auteur ; Toni BROWN, Auteur ; Marc WOODBURY-SMITH, Auteur ; Colin WILSON, Auteur ; Tracy FINCH, Auteur ; Jeremy R. PARR, Auteur Article en page(s) : p.774-785 Langues : Anglais (eng) Mots-clés : barriers to healthcare  health services  qualitative research Index. décimale : PER Périodiques Résumé : Research has shown that on average, autistic people are more likely to die earlier than non-autistic people, and barriers can stop autistic people accessing healthcare. We carried out a study where we interviewed healthcare professionals (including doctors and nurses), and held discussion groups of autistic people. Our results highlighted several key points: seeing the same professional is important for autistic people and clinicians; both clinicians and autistic people think making adjustments to healthcare is important (and often possible); autistic people process information in a different way and so may need extra support in appointments; and that clinicians are often constrained by time pressures or targets. En ligne : http://dx.doi.org/10.1177/1362361321993709 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444 [article] How to improve healthcare for autistic people: A qualitative study of the views of autistic people and clinicians [Texte imprimé et/ou numérique] / David MASON, Auteur ; Barry INGHAM, Auteur ; Heather BIRTLES, Auteur ; Cos MICHAEL, Auteur ; Clare SCARLETT, Auteur ; Ian A. JAMES, Auteur ; Toni BROWN, Auteur ; Marc WOODBURY-SMITH, Auteur ; Colin WILSON, Auteur ; Tracy FINCH, Auteur ; Jeremy R. PARR, Auteur . - p.774-785. Langues : Anglais (eng) in Autism > 25-3 (April 2021) . - p.774-785 Mots-clés : barriers to healthcare  health services  qualitative research Index. décimale : PER Périodiques Résumé : Research has shown that on average, autistic people are more likely to die earlier than non-autistic people, and barriers can stop autistic people accessing healthcare. We carried out a study where we interviewed healthcare professionals (including doctors and nurses), and held discussion groups of autistic people. Our results highlighted several key points: seeing the same professional is important for autistic people and clinicians; both clinicians and autistic people think making adjustments to healthcare is important (and often possible); autistic people process information in a different way and so may need extra support in appointments; and that clinicians are often constrained by time pressures or targets. En ligne : http://dx.doi.org/10.1177/1362361321993709 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444

Intolerance of Uncertainty and Anxiety (but not Alexithymia) Mediate the Association Between Autistic Traits and Quality of Life / Yeju LIN in Journal of Autism and Developmental Disorders, 55-4 (April 2024)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 55-4 (April 2024) . - p.1389-1401 Titre : Intolerance of Uncertainty and Anxiety (but not Alexithymia) Mediate the Association Between Autistic Traits and Quality of Life Type de document : Texte imprimé et/ou numérique Auteurs : Yeju LIN, Auteur ; David MASON, Auteur ; Colette HIRSCH, Auteur ; Francesca HAPPE, Auteur Article en page(s) : p.1389-1401 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Previous research has indicated that autistic individuals report lower quality of life (QoL) than non-autistic people. It is unclear whether it is the autism traits themselves or co-occurring thinking styles or mental health difficulties that most impair QoL. This study tested a hypothesised model to explore how 'intolerance of uncertainty' (IU), alexithymia (difficulty in identifying and describing own emotions), and anxiety play into the association between autistic traits and QoL. Online survey data were analysed from 116 autistic and 51 non-autistic adults who completed six standardised questionnaires measuring autistic traits, alexithymia, IU, anxiety and QoL (physical health, psychological health, social relations, and environment domains). The autistic group reported higher scores for alexithymia, IU and anxiety, and lower scores for QoL across domains, compared to the non-autistic group. Across the entire sample, autistic traits, alexithymia, IU and anxiety were positively correlated with one another, and negatively related to the four domains of QoL. Finally, IU and anxiety partially serially mediated the pathways from autistic traits to physical health and environment domains of QoL, and fully mediated the pathways from autistic traits to psychological health and social relations domains of QoL, across the full sample. The lower QoL experienced by autistic people may be explained in part by the mediating effect of both IU and anxiety (but not alexithymia). This study highlights the need for evidence-based interventions to address both IU and anxiety to improve QoL for autistic people/those with high levels of autistic traits. En ligne : https://doi.org/10.1007/s10803-024-06310-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=550 [article] Intolerance of Uncertainty and Anxiety (but not Alexithymia) Mediate the Association Between Autistic Traits and Quality of Life [Texte imprimé et/ou numérique] / Yeju LIN, Auteur ; David MASON, Auteur ; Colette HIRSCH, Auteur ; Francesca HAPPE, Auteur . - p.1389-1401. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 55-4 (April 2024) . - p.1389-1401 Index. décimale : PER Périodiques Résumé : Previous research has indicated that autistic individuals report lower quality of life (QoL) than non-autistic people. It is unclear whether it is the autism traits themselves or co-occurring thinking styles or mental health difficulties that most impair QoL. This study tested a hypothesised model to explore how 'intolerance of uncertainty' (IU), alexithymia (difficulty in identifying and describing own emotions), and anxiety play into the association between autistic traits and QoL. Online survey data were analysed from 116 autistic and 51 non-autistic adults who completed six standardised questionnaires measuring autistic traits, alexithymia, IU, anxiety and QoL (physical health, psychological health, social relations, and environment domains). The autistic group reported higher scores for alexithymia, IU and anxiety, and lower scores for QoL across domains, compared to the non-autistic group. Across the entire sample, autistic traits, alexithymia, IU and anxiety were positively correlated with one another, and negatively related to the four domains of QoL. Finally, IU and anxiety partially serially mediated the pathways from autistic traits to physical health and environment domains of QoL, and fully mediated the pathways from autistic traits to psychological health and social relations domains of QoL, across the full sample. The lower QoL experienced by autistic people may be explained in part by the mediating effect of both IU and anxiety (but not alexithymia). This study highlights the need for evidence-based interventions to address both IU and anxiety to improve QoL for autistic people/those with high levels of autistic traits. En ligne : https://doi.org/10.1007/s10803-024-06310-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=550

Re-examining the association between the age of learning one is autistic and adult outcomes / Punit SHAH ; David MASON ; Lucy A. LIVINGSTON in Autism, 28-2 (February 2024)  

Public ISBD [article]  inAutism > 28-2 (February 2024) . - p.433?448 Titre : Re-examining the association between the age of learning one is autistic and adult outcomes Type de document : Texte imprimé et/ou numérique Auteurs : Punit SHAH, Auteur ; David MASON, Auteur ; Lucy A. LIVINGSTON, Auteur Article en page(s) : p.433?448 Mots-clés : adults  diagnosis  disclosure  outcomes  quality of life  well-being Index. décimale : PER Périodiques Résumé : It was recently reported that learning one is autistic earlier in life is associated with greater quality of life and well-being in university students. In a pre-registered extension of this work, we addressed several limitations of this study by (a) recruiting a larger sample of more diverse ages and education levels, (b) distinguishing between learning about and receiving an autism diagnosis, (c) accounting for additional confounding variables, and (d) studying different quality of life dimensions. Autistic adults (N?=?300) reported when they first learned they were autistic, as well as when they actually received an autism diagnosis, and provided detailed socio-demographic information. Participants also completed measures of their autistic traits, as well as well-being and quality of life across multiple domains. In contrast to recent research, we found the age participants first learned they were autistic did not significantly and uniquely predict their quality of life and well-being. Rather, having more autistic traits was the strongest predictor of poorer quality of life and well-being, while other socio-demographic factors were also relevant. We discuss the implications of these findings for understanding and improving outcomes in autistic adults and call for higher quality open science on this important topic. Lay abstract An interesting recent study found that people who learned they were autistic at a younger age felt more positive about their lives (i.e., had better quality of life) than those who learned at an older age. However, this study has some limitations: (a) the study only involved a fairly small group of university students, (b) whether ?learning one is autistic? referred to learning about one?s diagnosis or receiving one?s diagnosis was unclear, (c) the influence of other factors on the link between age of learning one is autistic and quality of life was not considered, and (d) the assessment of different areas of quality of life was limited. Addressing these limitations, we re-examined whether the age at which one learns they are autistic relates to quality of life in adulthood. Contrary to the previous study, we found the age at which one learns about their autism does not have a significantly independent impact on their quality of life as an adult. Rather, other factors (e.g., autistic traits, sex, and additional mental health conditions) may have a greater impact. Given our participant sample was larger and more diverse in age and education level compared to previous research, this finding is likely to be more applicable to autistic adults from different backgrounds. Importantly, however, we are not suggesting that individuals should be made aware of their diagnosis later than sooner. Getting a timely diagnosis remains crucial for autistic people and their families to access appropriate support. En ligne : https://dx.doi.org/10.1177/13623613231173056 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519 [article] Re-examining the association between the age of learning one is autistic and adult outcomes [Texte imprimé et/ou numérique] / Punit SHAH, Auteur ; David MASON, Auteur ; Lucy A. LIVINGSTON, Auteur . - p.433?448. in Autism > 28-2 (February 2024) . - p.433?448 Mots-clés : adults  diagnosis  disclosure  outcomes  quality of life  well-being Index. décimale : PER Périodiques Résumé : It was recently reported that learning one is autistic earlier in life is associated with greater quality of life and well-being in university students. In a pre-registered extension of this work, we addressed several limitations of this study by (a) recruiting a larger sample of more diverse ages and education levels, (b) distinguishing between learning about and receiving an autism diagnosis, (c) accounting for additional confounding variables, and (d) studying different quality of life dimensions. Autistic adults (N?=?300) reported when they first learned they were autistic, as well as when they actually received an autism diagnosis, and provided detailed socio-demographic information. Participants also completed measures of their autistic traits, as well as well-being and quality of life across multiple domains. In contrast to recent research, we found the age participants first learned they were autistic did not significantly and uniquely predict their quality of life and well-being. Rather, having more autistic traits was the strongest predictor of poorer quality of life and well-being, while other socio-demographic factors were also relevant. We discuss the implications of these findings for understanding and improving outcomes in autistic adults and call for higher quality open science on this important topic. Lay abstract An interesting recent study found that people who learned they were autistic at a younger age felt more positive about their lives (i.e., had better quality of life) than those who learned at an older age. However, this study has some limitations: (a) the study only involved a fairly small group of university students, (b) whether ?learning one is autistic? referred to learning about one?s diagnosis or receiving one?s diagnosis was unclear, (c) the influence of other factors on the link between age of learning one is autistic and quality of life was not considered, and (d) the assessment of different areas of quality of life was limited. Addressing these limitations, we re-examined whether the age at which one learns they are autistic relates to quality of life in adulthood. Contrary to the previous study, we found the age at which one learns about their autism does not have a significantly independent impact on their quality of life as an adult. Rather, other factors (e.g., autistic traits, sex, and additional mental health conditions) may have a greater impact. Given our participant sample was larger and more diverse in age and education level compared to previous research, this finding is likely to be more applicable to autistic adults from different backgrounds. Importantly, however, we are not suggesting that individuals should be made aware of their diagnosis later than sooner. Getting a timely diagnosis remains crucial for autistic people and their families to access appropriate support. En ligne : https://dx.doi.org/10.1177/13623613231173056 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519

The role of alexithymia and autistic traits in predicting quality of life in an online sample / David MASON in Research in Autism Spectrum Disorders, 90 (February 2022)  

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“This may be a really good opportunity to make the world a more autism friendly place”: Professionals’ perspectives on the effects of COVID-19 on autistic individuals / Debbie SPAIN in Research in Autism Spectrum Disorders, 83 (May 2021)  

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