Autistic women?s experiences of self-compassion after receiving their diagnosis in adulthood / Rosemarie B. WILSON in Autism, 27-5 (July 2023)  

Public ISBD [article]  inAutism > 27-5 (July 2023) . - p.1336-1347 Titre : Autistic women?s experiences of self-compassion after receiving their diagnosis in adulthood Type de document : Texte imprimé et/ou numérique Auteurs : Rosemarie B. WILSON, Auteur ; Andrew R. THOMPSON, Auteur ; Georgina ROWSE, Auteur ; Richard SMITH, Auteur ; Amber-Sophie DUGDALE, Auteur ; Megan FREETH, Auteur Article en page(s) : p.1336-1347 Langues : Anglais (eng) Mots-clés : adults;autistic women;diagnosis;health services;interpretative phenomenological analysis;lived experience;qualitative research;self-compassion Index. décimale : PER Périodiques Résumé : Knowledge of autistic individuals' experiences of self-compassion is very limited. This study investigated autistic women?s experiences of self-compassion after receiving their diagnosis in adulthood. Eleven autistic women completed semi-structured interviews analysed using interpretative phenomenological analysis. Three super-ordinate themes were identified: "Disconnect between the autistic self and experience of societal expectations" (the burden of conformity; autism is misunderstood; social challenges; mental health impact); "Unmasking: the process of self-understanding" (autonomy and self-compassion; validation and grief) and "Impact on relationships" (diagnosis disclosure dilemmas; connection and understanding). Frustration with society?s misconceptions of autism and unhelpful thinking styles were presented as barriers to self-compassion. Most participants reported that their diagnosis had led to the development of a greater sense of self-understanding, which facilitated self-compassion. Some participants suggested their own increased understanding of autism facilitated their compassion towards others. Findings from this study have clinical implications for increasing understanding about autistic women?s experiences of self-compassion and possibly ways to facilitate its development, to enhance well-being. Lay abstract Knowledge of autistic individuals' experiences of self-compassion is very limited. This study investigated autistic women?s experiences of self-compassion after receiving their diagnosis in adulthood. Eleven autistic women were interviewed about their experiences of receiving their diagnosis in adulthood and their experiences of self-compassion. Systematic analysis of the interview transcripts revealed common themes in the participants' experiences. Participants reported that their autism diagnosis helped them to better understand themselves, particularly when reflecting on problematic past experiences. After receiving an autism diagnosis, participants described being able to relate to themselves with greater self-kindness compared to previous self-criticism; this included allowing themselves to assert their needs and engage in self-care activities. Participants spoke about having difficult social experiences, including feeling pressure to conform to expectations in society and often feeling misunderstood. The findings highlight the barriers autistic women face obtaining their diagnoses and demonstrate the need for autism training for professionals to support early identification. Findings from this study suggest that interventions aimed at developing self-compassion could support and enhance autistic women?s well-being. En ligne : http://dx.doi.org/10.1177/13623613221136752 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=507 [article] Autistic women?s experiences of self-compassion after receiving their diagnosis in adulthood [Texte imprimé et/ou numérique] / Rosemarie B. WILSON, Auteur ; Andrew R. THOMPSON, Auteur ; Georgina ROWSE, Auteur ; Richard SMITH, Auteur ; Amber-Sophie DUGDALE, Auteur ; Megan FREETH, Auteur . - p.1336-1347. Langues : Anglais (eng) in Autism > 27-5 (July 2023) . - p.1336-1347 Mots-clés : adults;autistic women;diagnosis;health services;interpretative phenomenological analysis;lived experience;qualitative research;self-compassion Index. décimale : PER Périodiques Résumé : Knowledge of autistic individuals' experiences of self-compassion is very limited. This study investigated autistic women?s experiences of self-compassion after receiving their diagnosis in adulthood. Eleven autistic women completed semi-structured interviews analysed using interpretative phenomenological analysis. Three super-ordinate themes were identified: "Disconnect between the autistic self and experience of societal expectations" (the burden of conformity; autism is misunderstood; social challenges; mental health impact); "Unmasking: the process of self-understanding" (autonomy and self-compassion; validation and grief) and "Impact on relationships" (diagnosis disclosure dilemmas; connection and understanding). Frustration with society?s misconceptions of autism and unhelpful thinking styles were presented as barriers to self-compassion. Most participants reported that their diagnosis had led to the development of a greater sense of self-understanding, which facilitated self-compassion. Some participants suggested their own increased understanding of autism facilitated their compassion towards others. Findings from this study have clinical implications for increasing understanding about autistic women?s experiences of self-compassion and possibly ways to facilitate its development, to enhance well-being. Lay abstract Knowledge of autistic individuals' experiences of self-compassion is very limited. This study investigated autistic women?s experiences of self-compassion after receiving their diagnosis in adulthood. Eleven autistic women were interviewed about their experiences of receiving their diagnosis in adulthood and their experiences of self-compassion. Systematic analysis of the interview transcripts revealed common themes in the participants' experiences. Participants reported that their autism diagnosis helped them to better understand themselves, particularly when reflecting on problematic past experiences. After receiving an autism diagnosis, participants described being able to relate to themselves with greater self-kindness compared to previous self-criticism; this included allowing themselves to assert their needs and engage in self-care activities. Participants spoke about having difficult social experiences, including feeling pressure to conform to expectations in society and often feeling misunderstood. The findings highlight the barriers autistic women face obtaining their diagnoses and demonstrate the need for autism training for professionals to support early identification. Findings from this study suggest that interventions aimed at developing self-compassion could support and enhance autistic women?s well-being. En ligne : http://dx.doi.org/10.1177/13623613221136752 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=507

'Conflict versus Congruence': A Qualitative Study Exploring the Experience of Gender Dysphoria for Adults with Autism Spectrum Disorder / Rachel S. COLEMAN-SMITH in Journal of Autism and Developmental Disorders, 50-8 (August 2020)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 50-8 (August 2020) . - p.2643-2657 Titre : 'Conflict versus Congruence': A Qualitative Study Exploring the Experience of Gender Dysphoria for Adults with Autism Spectrum Disorder Type de document : Texte imprimé et/ou numérique Auteurs : Rachel S. COLEMAN-SMITH, Auteur ; Richard SMITH, Auteur ; Elizabeth MILNE, Auteur ; Andrew R. THOMPSON, Auteur Article en page(s) : p.2643-2657 Langues : Anglais (eng) Mots-clés : Autism  Gender dysphoria  Grounded theory  Qualitative Index. décimale : PER Périodiques Résumé : An emergent evidence base indicates a higher prevalence of autism exists amongst people attending gender identity clinics. This qualitative study explored adults' with autism experiences of coming to understand and address their gender dysphoria (GD). Data were collected and analysed using Grounded Theory. Ten adults with autism and GD undertook semi-structured interviews. A tentative theoretical framework of common processes involved in understanding and addressing GD for individuals with autism was developed. The experience is captured in the core category-Conflict versus Congruence. A key finding was the impact of autism as a barrier but sometimes a protective factor in participants' understanding and addressing GD. Participants appeared to achieve greater personal congruence and wellbeing upon transition. Nevertheless, conflicts remained as they navigated the social world with a continuing fear of hostility and sense of difference due to having two stigmatised identities. En ligne : http://dx.doi.org/10.1007/s10803-019-04296-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=428 [article] 'Conflict versus Congruence': A Qualitative Study Exploring the Experience of Gender Dysphoria for Adults with Autism Spectrum Disorder [Texte imprimé et/ou numérique] / Rachel S. COLEMAN-SMITH, Auteur ; Richard SMITH, Auteur ; Elizabeth MILNE, Auteur ; Andrew R. THOMPSON, Auteur . - p.2643-2657. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 50-8 (August 2020) . - p.2643-2657 Mots-clés : Autism  Gender dysphoria  Grounded theory  Qualitative Index. décimale : PER Périodiques Résumé : An emergent evidence base indicates a higher prevalence of autism exists amongst people attending gender identity clinics. This qualitative study explored adults' with autism experiences of coming to understand and address their gender dysphoria (GD). Data were collected and analysed using Grounded Theory. Ten adults with autism and GD undertook semi-structured interviews. A tentative theoretical framework of common processes involved in understanding and addressing GD for individuals with autism was developed. The experience is captured in the core category-Conflict versus Congruence. A key finding was the impact of autism as a barrier but sometimes a protective factor in participants' understanding and addressing GD. Participants appeared to achieve greater personal congruence and wellbeing upon transition. Nevertheless, conflicts remained as they navigated the social world with a continuing fear of hostility and sense of difference due to having two stigmatised identities. En ligne : http://dx.doi.org/10.1007/s10803-019-04296-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=428

How healthcare systems are experienced by autistic adults in the United Kingdom: A meta-ethnography / Megan FREETH ; Andrew R. THOMPSON in Autism, 28-9 (September 2024)  

Public ISBD [article]  inAutism > 28-9 (September 2024) . - p.2166-2178 Titre : How healthcare systems are experienced by autistic adults in the United Kingdom: A meta-ethnography Type de document : Texte imprimé et/ou numérique Auteurs : Megan FREETH, Auteur ; Andrew R. THOMPSON, Auteur Article en page(s) : p.2166-2178 Langues : (en) Mots-clés : adults  autism spectrum disorders  autistic  health services  healthcare  qualitative research  UK healthcare Index. décimale : PER Périodiques Résumé : Autistic adults are at increased risk of both mental and physical health difficulties, and yet can face barriers to accessing healthcare. A meta-ethnographic approach was used to conduct a review of the existing literature regarding autistic adults' experiences of accessing healthcare. Four databases were systematically searched for qualitative and mixed-method studies reporting on the experiences of autistic adults without a co-occurring learning disability accessing adult healthcare services within the United Kingdom. Fifteen studies met the inclusion criteria, and seven steps were used to systematically extract the data and then generate novel themes. Three superordinate themes were identified: Professionals' lack of knowledge can be damaging, Need to reduce processing demands and Adaptation to improve engagement. This review highlights the wide-reaching damaging impact misdiagnosis, inadequate or inappropriate treatment, overwhelming environments and inaccessible systems can have on the well-being and ability of autistic adults to engage with treatment. The lack of autism knowledge and understanding experienced in interactions with healthcare professionals, along with autistic adult?s own communication and sensory processing differences, demonstrates the need for widely delivered training co-produced with autistic adults alongside bespoke and person-centred adaptations. Lay abstract Autistic adults are more likely to experience mental and physical health difficulties, and yet can find it difficult to get the support that they need. A meta-ethnographic approach was used to review the existing research on autistic adults' experiences of accessing healthcare. Four databases were searched for qualitative and mixed-method studies which looked at the experiences of autistic adults who did not also have a learning disability when using healthcare services in the United Kingdom. Fifteen papers met the criteria to be included, and seven steps were used to analyse the information and develop new themes. Three main themes were identified: Professionals' lack of knowledge can be damaging, Need to reduce processing demands and Adaptation to improve engagement. This review highlights how damaging misdiagnosis, inappropriate treatment, overwhelming environments and systems that are difficult to access can have on the well-being of autistic adults. Limited knowledge and understanding about autism knowledge among healthcare professionals along with autistic adult?s own communication and sensory differences indicate that there is a need for improved training developed with autistic adults and adaptations. En ligne : https://dx.doi.org/10.1177/13623613241235531 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=535 [article] How healthcare systems are experienced by autistic adults in the United Kingdom: A meta-ethnography [Texte imprimé et/ou numérique] / Megan FREETH, Auteur ; Andrew R. THOMPSON, Auteur . - p.2166-2178. Langues : (en) in Autism > 28-9 (September 2024) . - p.2166-2178 Mots-clés : adults  autism spectrum disorders  autistic  health services  healthcare  qualitative research  UK healthcare Index. décimale : PER Périodiques Résumé : Autistic adults are at increased risk of both mental and physical health difficulties, and yet can face barriers to accessing healthcare. A meta-ethnographic approach was used to conduct a review of the existing literature regarding autistic adults' experiences of accessing healthcare. Four databases were systematically searched for qualitative and mixed-method studies reporting on the experiences of autistic adults without a co-occurring learning disability accessing adult healthcare services within the United Kingdom. Fifteen studies met the inclusion criteria, and seven steps were used to systematically extract the data and then generate novel themes. Three superordinate themes were identified: Professionals' lack of knowledge can be damaging, Need to reduce processing demands and Adaptation to improve engagement. This review highlights the wide-reaching damaging impact misdiagnosis, inadequate or inappropriate treatment, overwhelming environments and inaccessible systems can have on the well-being and ability of autistic adults to engage with treatment. The lack of autism knowledge and understanding experienced in interactions with healthcare professionals, along with autistic adult?s own communication and sensory processing differences, demonstrates the need for widely delivered training co-produced with autistic adults alongside bespoke and person-centred adaptations. Lay abstract Autistic adults are more likely to experience mental and physical health difficulties, and yet can find it difficult to get the support that they need. A meta-ethnographic approach was used to review the existing research on autistic adults' experiences of accessing healthcare. Four databases were searched for qualitative and mixed-method studies which looked at the experiences of autistic adults who did not also have a learning disability when using healthcare services in the United Kingdom. Fifteen papers met the criteria to be included, and seven steps were used to analyse the information and develop new themes. Three main themes were identified: Professionals' lack of knowledge can be damaging, Need to reduce processing demands and Adaptation to improve engagement. This review highlights how damaging misdiagnosis, inappropriate treatment, overwhelming environments and systems that are difficult to access can have on the well-being of autistic adults. Limited knowledge and understanding about autism knowledge among healthcare professionals along with autistic adult?s own communication and sensory differences indicate that there is a need for improved training developed with autistic adults and adaptations. En ligne : https://dx.doi.org/10.1177/13623613241235531 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=535

'I?m not just being difficult .?.?. I?m finding it difficult': A qualitative approach to understanding experiences of autistic parents when interacting with statutory services regarding their autistic child / Sarah RADEV in Autism, 28-6 (June 2024)  

Public ISBD [article]  inAutism > 28-6 (June 2024) . - p.1394-1404 Titre : 'I?m not just being difficult .?.?. I?m finding it difficult': A qualitative approach to understanding experiences of autistic parents when interacting with statutory services regarding their autistic child Type de document : Texte imprimé et/ou numérique Auteurs : Sarah RADEV, Auteur ; Megan FREETH, Auteur ; Andrew R. THOMPSON, Auteur Article en page(s) : p.1394-1404 Langues : Anglais (eng) Mots-clés : adults  advocacy  autism spectrum disorders  education services  health services  parents  qualitative research  schoolage children Index. décimale : PER Périodiques Résumé : The experiences of autistic parents when interacting with statutory services for their autistic children is not well understood. This study investigates the experiences of autistic parents' interactions with statutory services, including education and healthcare, in relation to their autistic children. Interpretative Phenomenological Analysis was used to investigate their experiences. Ten autistic mothers of autistic children in mainstream education completed semi-structured interviews, which were co-developed with autistic parents. Two superordinate themes were developed: (1) The wider system is the problem and (2) Feeling judged and stigmatised. While Theme 1 demonstrates some similarities in the experiences of autistic parents to that of non-autistic parents in previous studies, theme 2 is unique to autistic parents who may feel that they are being treated differently. These themes indicate the importance of training encouraging a strength-based rather than deficit-based understanding of autism. Participants highlighted the wider system is the problem rather than individual professionals, and that it places some families at a disadvantage. Lay abstract Becoming a parent is an important part of adult life for many people, including autistic people. Many parents of autistic children can find getting the right support for their children difficult. Knowledge is currently poor about how this is experienced by parents who are also autistic themselves. The main researcher is also an autistic parent to an autistic child and other experts by experience were consulted in the development of the study. Ten autistic mothers with autistic children in mainstream education were interviewed about their experiences of seeking support for their autistic children from services such as healthcare and education. Participants talked about finding the overall system being the main problem, rather than the individuals working in it, and about needing to fight to get the right support for their children. These are points that non-autistic parents have also raised before. Participants also talked about feeling judged and stigmatised for being autistic, and about struggling to manage sensory and communication difficulties, which is something that has not been talked about by non-autistic parents. Improving services to offer better support to autistic families is important and can be achieved through better training. This training should be developed and run by autistic adults and focus on positive aspects of autism, rather than negative. En ligne : https://dx.doi.org/10.1177/13623613231212794 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 [article] 'I?m not just being difficult .?.?. I?m finding it difficult': A qualitative approach to understanding experiences of autistic parents when interacting with statutory services regarding their autistic child [Texte imprimé et/ou numérique] / Sarah RADEV, Auteur ; Megan FREETH, Auteur ; Andrew R. THOMPSON, Auteur . - p.1394-1404. Langues : Anglais (eng) in Autism > 28-6 (June 2024) . - p.1394-1404 Mots-clés : adults  advocacy  autism spectrum disorders  education services  health services  parents  qualitative research  schoolage children Index. décimale : PER Périodiques Résumé : The experiences of autistic parents when interacting with statutory services for their autistic children is not well understood. This study investigates the experiences of autistic parents' interactions with statutory services, including education and healthcare, in relation to their autistic children. Interpretative Phenomenological Analysis was used to investigate their experiences. Ten autistic mothers of autistic children in mainstream education completed semi-structured interviews, which were co-developed with autistic parents. Two superordinate themes were developed: (1) The wider system is the problem and (2) Feeling judged and stigmatised. While Theme 1 demonstrates some similarities in the experiences of autistic parents to that of non-autistic parents in previous studies, theme 2 is unique to autistic parents who may feel that they are being treated differently. These themes indicate the importance of training encouraging a strength-based rather than deficit-based understanding of autism. Participants highlighted the wider system is the problem rather than individual professionals, and that it places some families at a disadvantage. Lay abstract Becoming a parent is an important part of adult life for many people, including autistic people. Many parents of autistic children can find getting the right support for their children difficult. Knowledge is currently poor about how this is experienced by parents who are also autistic themselves. The main researcher is also an autistic parent to an autistic child and other experts by experience were consulted in the development of the study. Ten autistic mothers with autistic children in mainstream education were interviewed about their experiences of seeking support for their autistic children from services such as healthcare and education. Participants talked about finding the overall system being the main problem, rather than the individuals working in it, and about needing to fight to get the right support for their children. These are points that non-autistic parents have also raised before. Participants also talked about feeling judged and stigmatised for being autistic, and about struggling to manage sensory and communication difficulties, which is something that has not been talked about by non-autistic parents. Improving services to offer better support to autistic families is important and can be achieved through better training. This training should be developed and run by autistic adults and focus on positive aspects of autism, rather than negative. En ligne : https://dx.doi.org/10.1177/13623613231212794 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529

Intense connection and love: The experiences of autistic mothers / Amber-Sophie DUGDALE in Autism, 26-7 (October 2022)  

Public ISBD [article]  inAutism > 26-7 (October 2022) . - p.1973-1984 Titre : Intense connection and love: The experiences of autistic mothers Type de document : Texte imprimé et/ou numérique Auteurs : Amber-Sophie DUGDALE, Auteur ; Andrew R. THOMPSON, Auteur ; Alexandra LEEDHAM, Auteur ; Nigel BEAIL, Auteur ; Megan FREETH, Auteur Article en page(s) : p.1973-1984 Langues : Anglais (eng) Mots-clés : Adult  Autism Spectrum Disorder  Autistic Disorder  Child  Emotions  Female  Humans  Love  Mothers  Pregnancy  Qualitative Research  autistic mother  interpretative phenomenological analysis  lived experience  parenting Index. décimale : PER Périodiques Résumé : For many women, adulthood involves becoming a mother. Knowledge of how motherhood is experienced by autistic women is currently poor. Poor knowledge has a range of negative consequences and can lead to inappropriate support. In this study, nine autistic women were interviewed about their experiences of motherhood. Seven of the nine mothers had an officially diagnosed autistic child, the final two mothers also suspected at least one of their children to be autistic. Systematic in-depth analysis of interview transcripts identified a range of common themes. Participants largely experienced motherhood as joyful, rewarding, and enjoyable, though managing children's needs had a profound personal impact. Participants reflected on the need for self-care and self-acceptance, resulting in personal growth and adaptation. Participants also spoke of strong bonds, feelings of intense connection, and a range of shared experiences with their children. It was also clear that autistic motherhood is associated with a series of challenges unlikely to be experienced by non-autistic mothers, including the necessity of negotiating misunderstandings from others. The findings demonstrate that, generally, professionals need to be better educated on how autism presents in adulthood, including the fact that autistic women often engage in behaviour to mask their true self. Professionals need to know that there is potential for mismatching between emotional experience and facial expression, that autistic women have sensory needs (especially in pregnancy). Professionals frequently struggle to effectively take the needs and perspectives of autistic mothers into account, resulting in profoundly negative consequences for the mother. En ligne : http://dx.doi.org/10.1177/13623613211005987 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=484 [article] Intense connection and love: The experiences of autistic mothers [Texte imprimé et/ou numérique] / Amber-Sophie DUGDALE, Auteur ; Andrew R. THOMPSON, Auteur ; Alexandra LEEDHAM, Auteur ; Nigel BEAIL, Auteur ; Megan FREETH, Auteur . - p.1973-1984. Langues : Anglais (eng) in Autism > 26-7 (October 2022) . - p.1973-1984 Mots-clés : Adult  Autism Spectrum Disorder  Autistic Disorder  Child  Emotions  Female  Humans  Love  Mothers  Pregnancy  Qualitative Research  autistic mother  interpretative phenomenological analysis  lived experience  parenting Index. décimale : PER Périodiques Résumé : For many women, adulthood involves becoming a mother. Knowledge of how motherhood is experienced by autistic women is currently poor. Poor knowledge has a range of negative consequences and can lead to inappropriate support. In this study, nine autistic women were interviewed about their experiences of motherhood. Seven of the nine mothers had an officially diagnosed autistic child, the final two mothers also suspected at least one of their children to be autistic. Systematic in-depth analysis of interview transcripts identified a range of common themes. Participants largely experienced motherhood as joyful, rewarding, and enjoyable, though managing children's needs had a profound personal impact. Participants reflected on the need for self-care and self-acceptance, resulting in personal growth and adaptation. Participants also spoke of strong bonds, feelings of intense connection, and a range of shared experiences with their children. It was also clear that autistic motherhood is associated with a series of challenges unlikely to be experienced by non-autistic mothers, including the necessity of negotiating misunderstandings from others. The findings demonstrate that, generally, professionals need to be better educated on how autism presents in adulthood, including the fact that autistic women often engage in behaviour to mask their true self. Professionals need to know that there is potential for mismatching between emotional experience and facial expression, that autistic women have sensory needs (especially in pregnancy). Professionals frequently struggle to effectively take the needs and perspectives of autistic mothers into account, resulting in profoundly negative consequences for the mother. En ligne : http://dx.doi.org/10.1177/13623613211005987 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=484

The experience of seeking, receiving, and reflecting upon a diagnosis of autism in the UK: A meta-synthesis of qualitative studies conducted with autistic individuals / Rosemarie B. WILSON in Research in Autism Spectrum Disorders, 103 (May 2023)  

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