Exploring autistic adults' psychosocial experiences affecting beginnings, continuity and change in camouflaging over time: A qualitative study in Singapore / Beatrice Rui Yi LOO in Autism, 28-3 (March 2024)  

Public ISBD [article]  inAutism > 28-3 (March 2024) . - p.627-643 Titre : Exploring autistic adults' psychosocial experiences affecting beginnings, continuity and change in camouflaging over time: A qualitative study in Singapore Type de document : Texte imprimé et/ou numérique Auteurs : Beatrice Rui Yi LOO, Auteur ; Truman Jing Yang TEO, Auteur ; Melanie Jiamin LIANG, Auteur ; Dawn-Joy LEONG, Auteur ; Diana Weiting TAN, Auteur ; Sici ZHUANG, Auteur ; Laura HULL, Auteur ; Lucy A. LIVINGSTON, Auteur ; Will MANDY, Auteur ; Francesca HAPPE, Auteur ; Iliana MAGIATI, Auteur Article en page(s) : p.627-643 Langues : Anglais (eng) Mots-clés : adults  autism  camouflaging  masking  mental health  well-being Index. décimale : PER Périodiques Résumé : Camouflaging (or otherwise referred to as masking or passing) involves hiding one?s autistic-related characteristics and differences to get by in social situations in predominantly non-autistic societies. Very little is known to date about the course of camouflaging motivations and strategies over time or the psychosocial factors that may influence autistic people?s camouflaging choices and trajectories. In an exploratory qualitative study within an Asian sociocultural context, we interviewed 11 Singaporean autistic adults (9 males, 2 females, aged 22-45?years) about their camouflaging experiences to better understand (1) their camouflaging motivations and strategies over time, and (2) related psychosocial influences. Organised across four phases (pre-camouflaging, beginnings, continuity and change over time), 17 themes relating to camouflaging motivations and 8 themes relating to strategies were identified. The earliest camouflaging motivations were predominantly relational, linked to a negative self-identity that had been shaped by adverse social experiences. Camouflaging strategies became increasingly complex and integrated into one?s sense of self over time. Our findings highlight the role of psychosocial pressures precipitating camouflaging and emphasise the need for individual and societal changes, including moving towards enhanced acceptance and inclusion to reduce psychosocial pressures on autistic people to camouflage. Lay Abstract Over their lifetimes, many autistic people learn to camouflage (hide or mask) their autism-related differences to forge relationships, find work and live independently in largely non-autistic societies. Autistic adults have described camouflaging as a 'lifetime of conditioning . . . to act normal' involving 'years of effort', suggesting that camouflaging develops over an autistic person?s lifetime and may start early on, in childhood or adolescence. Yet, we know very little about why and how autistic people start to camouflage, or why and how their camouflaging behaviours continue or change over time. We interviewed 11 Singaporean autistic adults (9 male, 2 female, 22-45?years old) who shared their camouflaging experiences. We found that autistic adults' earliest motivations to camouflage were largely related to the desire to fit in and connect with others. They also camouflaged to avoid difficult social experiences (such as being teased or bullied). Autistic adults shared that their camouflaging behaviours became more complex and that, for some, camouflaging became a part of their self-identity over time. Our findings suggest that society should not pathologise autistic differences, but instead accept and include autistic people, to reduce the pressure on autistic people to hide who they truly are. En ligne : https://dx.doi.org/10.1177/13623613231180075 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=523 [article] Exploring autistic adults' psychosocial experiences affecting beginnings, continuity and change in camouflaging over time: A qualitative study in Singapore [Texte imprimé et/ou numérique] / Beatrice Rui Yi LOO, Auteur ; Truman Jing Yang TEO, Auteur ; Melanie Jiamin LIANG, Auteur ; Dawn-Joy LEONG, Auteur ; Diana Weiting TAN, Auteur ; Sici ZHUANG, Auteur ; Laura HULL, Auteur ; Lucy A. LIVINGSTON, Auteur ; Will MANDY, Auteur ; Francesca HAPPE, Auteur ; Iliana MAGIATI, Auteur . - p.627-643. Langues : Anglais (eng) in Autism > 28-3 (March 2024) . - p.627-643 Mots-clés : adults  autism  camouflaging  masking  mental health  well-being Index. décimale : PER Périodiques Résumé : Camouflaging (or otherwise referred to as masking or passing) involves hiding one?s autistic-related characteristics and differences to get by in social situations in predominantly non-autistic societies. Very little is known to date about the course of camouflaging motivations and strategies over time or the psychosocial factors that may influence autistic people?s camouflaging choices and trajectories. In an exploratory qualitative study within an Asian sociocultural context, we interviewed 11 Singaporean autistic adults (9 males, 2 females, aged 22-45?years) about their camouflaging experiences to better understand (1) their camouflaging motivations and strategies over time, and (2) related psychosocial influences. Organised across four phases (pre-camouflaging, beginnings, continuity and change over time), 17 themes relating to camouflaging motivations and 8 themes relating to strategies were identified. The earliest camouflaging motivations were predominantly relational, linked to a negative self-identity that had been shaped by adverse social experiences. Camouflaging strategies became increasingly complex and integrated into one?s sense of self over time. Our findings highlight the role of psychosocial pressures precipitating camouflaging and emphasise the need for individual and societal changes, including moving towards enhanced acceptance and inclusion to reduce psychosocial pressures on autistic people to camouflage. Lay Abstract Over their lifetimes, many autistic people learn to camouflage (hide or mask) their autism-related differences to forge relationships, find work and live independently in largely non-autistic societies. Autistic adults have described camouflaging as a 'lifetime of conditioning . . . to act normal' involving 'years of effort', suggesting that camouflaging develops over an autistic person?s lifetime and may start early on, in childhood or adolescence. Yet, we know very little about why and how autistic people start to camouflage, or why and how their camouflaging behaviours continue or change over time. We interviewed 11 Singaporean autistic adults (9 male, 2 female, 22-45?years old) who shared their camouflaging experiences. We found that autistic adults' earliest motivations to camouflage were largely related to the desire to fit in and connect with others. They also camouflaged to avoid difficult social experiences (such as being teased or bullied). Autistic adults shared that their camouflaging behaviours became more complex and that, for some, camouflaging became a part of their self-identity over time. Our findings suggest that society should not pathologise autistic differences, but instead accept and include autistic people, to reduce the pressure on autistic people to hide who they truly are. En ligne : https://dx.doi.org/10.1177/13623613231180075 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=523

Exploring the construct validity of the Camouflaging Autistic Traits Questionnaire: A factor analytic study / Katharine MCKINNON in Autism, 29-3 (March 2025)  

Public ISBD [article]  inAutism > 29-3 (March 2025) . - p.642-658 Titre : Exploring the construct validity of the Camouflaging Autistic Traits Questionnaire: A factor analytic study Type de document : Texte imprimé et/ou numérique Auteurs : Katharine MCKINNON, Auteur ; Mackenzie BOUGOURE, Auteur ; Sici ZHUANG, Auteur ; Diana Weiting TAN, Auteur ; Iliana MAGIATI, Auteur Article en page(s) : p.642-658 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : 'Camouflaging' is a set of strategies used by autistic people to hide or compensate for their autistic characteristics to fit into predominantly non-autistic social environments. Many researchers have used the Camouflaging Autistic Traits Questionnaire (... En ligne : https://dx.doi.org/10.1177/13623613241287964 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=550 [article] Exploring the construct validity of the Camouflaging Autistic Traits Questionnaire: A factor analytic study [Texte imprimé et/ou numérique] / Katharine MCKINNON, Auteur ; Mackenzie BOUGOURE, Auteur ; Sici ZHUANG, Auteur ; Diana Weiting TAN, Auteur ; Iliana MAGIATI, Auteur . - p.642-658. Langues : Anglais (eng) in Autism > 29-3 (March 2025) . - p.642-658 Index. décimale : PER Périodiques Résumé : 'Camouflaging' is a set of strategies used by autistic people to hide or compensate for their autistic characteristics to fit into predominantly non-autistic social environments. Many researchers have used the Camouflaging Autistic Traits Questionnaire (... En ligne : https://dx.doi.org/10.1177/13623613241287964 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=550

Investigating facial phenotype in autism spectrum conditions: The importance of a hypothesis driven approach / Maryam BOUTRUS in Autism Research, 10-12 (December 2017)  

Public ISBD [article]  inAutism Research > 10-12 (December 2017) . - p.1910-1918 Titre : Investigating facial phenotype in autism spectrum conditions: The importance of a hypothesis driven approach Type de document : Texte imprimé et/ou numérique Auteurs : Maryam BOUTRUS, Auteur ; Murray T. MAYBERY, Auteur ; Gail A. ALVARES, Auteur ; Diana Weiting TAN, Auteur ; Kandice J. VARCIN, Auteur ; Andrew J. O. WHITEHOUSE, Auteur Article en page(s) : p.1910-1918 Langues : Anglais (eng) Mots-clés : neurodevelopment  facial phenotype  morphology  subgroups  autism Index. décimale : PER Périodiques Résumé : Atypical facial characteristics have been observed in many disorders associated with developmental disability. While autism spectrum conditions (ASC) have not previously been thought to be associated with a distinct facial phenotype, an emerging research literature is casting doubt on this assumption. The identification of differences in the facial phenotype of individuals with ASC may contribute to efforts to promote early identification of the condition and help elucidate etiological pathways. With the aim of identifying facial phenotypes associated with ASC, this commentary evaluated facial features purported to distinguish ASC from typical development. Although there is little consensus across the reviewed studies for the majority of facial characteristics described, preliminary evidence suggests increased facial asymmetry may be more common in ASC. There is also evidence to suggest that there are morphologically distinct subgroups within ASC that correspond with different cognitive and behavioral symptomatology. However, in light of the various inconsistencies in the reported literature, and based on an accumulating understanding of etiological pathways proposed to be associated with ASC, we propose an alternative paradigm for investigating facial phenotypes in ASC. A series of studies are outlined to demonstrate the promise of a research program that has taken a hypothesis-driven approach to examine facial phenotypes associated with increased exposure to prenatal testosterone and to ASC. Autism Res 2017, 10: 1910–1918. © 2017 International Society for Autism Research, Wiley Periodicals, Inc. Lay Summary This commentary reviewed studies that found differences in the facial features of individuals with autism spectrum conditions (ASC) compared to typically developing individuals. While there is little agreement between studies, there is some support for asymmetrical facial features associated with ASC, and preliminary evidence that particular facial features relate to specific patterns of cognitive and behavioral symptoms. However, in light of inconsistencies between studies and based on accumulating understanding of etiological pathways, we propose an alternative approach to investigating facial differences in ASC. En ligne : http://dx.doi.org/10.1002/aur.1824 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=322 [article] Investigating facial phenotype in autism spectrum conditions: The importance of a hypothesis driven approach [Texte imprimé et/ou numérique] / Maryam BOUTRUS, Auteur ; Murray T. MAYBERY, Auteur ; Gail A. ALVARES, Auteur ; Diana Weiting TAN, Auteur ; Kandice J. VARCIN, Auteur ; Andrew J. O. WHITEHOUSE, Auteur . - p.1910-1918. Langues : Anglais (eng) in Autism Research > 10-12 (December 2017) . - p.1910-1918 Mots-clés : neurodevelopment  facial phenotype  morphology  subgroups  autism Index. décimale : PER Périodiques Résumé : Atypical facial characteristics have been observed in many disorders associated with developmental disability. While autism spectrum conditions (ASC) have not previously been thought to be associated with a distinct facial phenotype, an emerging research literature is casting doubt on this assumption. The identification of differences in the facial phenotype of individuals with ASC may contribute to efforts to promote early identification of the condition and help elucidate etiological pathways. With the aim of identifying facial phenotypes associated with ASC, this commentary evaluated facial features purported to distinguish ASC from typical development. Although there is little consensus across the reviewed studies for the majority of facial characteristics described, preliminary evidence suggests increased facial asymmetry may be more common in ASC. There is also evidence to suggest that there are morphologically distinct subgroups within ASC that correspond with different cognitive and behavioral symptomatology. However, in light of the various inconsistencies in the reported literature, and based on an accumulating understanding of etiological pathways proposed to be associated with ASC, we propose an alternative paradigm for investigating facial phenotypes in ASC. A series of studies are outlined to demonstrate the promise of a research program that has taken a hypothesis-driven approach to examine facial phenotypes associated with increased exposure to prenatal testosterone and to ASC. Autism Res 2017, 10: 1910–1918. © 2017 International Society for Autism Research, Wiley Periodicals, Inc. Lay Summary This commentary reviewed studies that found differences in the facial features of individuals with autism spectrum conditions (ASC) compared to typically developing individuals. While there is little agreement between studies, there is some support for asymmetrical facial features associated with ASC, and preliminary evidence that particular facial features relate to specific patterns of cognitive and behavioral symptoms. However, in light of inconsistencies between studies and based on accumulating understanding of etiological pathways, we propose an alternative approach to investigating facial differences in ASC. En ligne : http://dx.doi.org/10.1002/aur.1824 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=322

'It?s a symbolic violence': Autistic people?s experiences of discrimination at universities in Australia / Diana Weiting TAN in Autism, 28-6 (June 2024)  

Public ISBD [article]  inAutism > 28-6 (June 2024) . - p.1344-1356 Titre : 'It?s a symbolic violence': Autistic people?s experiences of discrimination at universities in Australia Type de document : Texte imprimé et/ou numérique Auteurs : Diana Weiting TAN, Auteur ; Marion RABUKA, Auteur ; Tori HAAR, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.1344-1356 Langues : Anglais (eng) Mots-clés : autism  co-production  discrimination  higher education  inclusive education  participatory research  stigma Index. décimale : PER Périodiques Résumé : In recent years, the number of autistic people entering university has increased in Australia and worldwide. While an encouraging trend, autistic students' completion rates remain much lower than non-autistic students in Australia. Perhaps unsurprisingly, numerous studies investigating autistic people?s experiences at universities have identified stigma and discrimination as a significant barrier facing autistic people in higher education. In this study, our team of autistic co-researchers and non-autistic researchers co-produced an in-depth qualitative study to understand the contexts and circumstances in which autistic people felt stigmatised or experienced discrimination at universities in Australia. We interviewed 21 autistic people who either had completed at least one university course, or were studying a university course, or had enrolled in but discontinued at least one university course in Australia. Using reflexive thematic analysis, we identified four themes: (1) 'My disability is something that people just don?t have a clue about', (2) 'the system is really stacked against you', (3) the onus is on autistic students, and (4) 'grit and stubbornness'. Based on these findings, we suggested implementing Universal Design for Learning, neurodiversity-affirming and trauma-informed practices, together with a participatory approach to better design university curricula, processes, and support services for autistic students. Lay Abstract Autistic students experience many challenges at university. One significant barrier identified in past research was autistic students' experiences of discrimination (i.e. being treat differently) and stigma (being judged differently). Our research team included both autistic and non-autistic researchers who designed a project to help explore autistic students' experiences of stigma and discrimination at Australian universities. We interviewed 21 autistic students who went to a university - some had completed qualifications, and some had not. From our interviews, we identified four themes: (1) 'My disability is something that people just don?t have a clue about', (2) 'the system is really stacked against you', (3) the onus is on autistic students, and (4) 'grit and stubbornness'. As a result, we recommended changes in the way courses are written and taught so that autistic people have opportunities that meet their ways of learning. It is also important for university staff to understand the impact of trauma experienced by autistic people and that universities work together with autistic people to design courses and supports that include autistic ways of learning, accessible university processes and identify support needs. En ligne : https://dx.doi.org/10.1177/13623613231219744 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 [article] 'It?s a symbolic violence': Autistic people?s experiences of discrimination at universities in Australia [Texte imprimé et/ou numérique] / Diana Weiting TAN, Auteur ; Marion RABUKA, Auteur ; Tori HAAR, Auteur ; Elizabeth PELLICANO, Auteur . - p.1344-1356. Langues : Anglais (eng) in Autism > 28-6 (June 2024) . - p.1344-1356 Mots-clés : autism  co-production  discrimination  higher education  inclusive education  participatory research  stigma Index. décimale : PER Périodiques Résumé : In recent years, the number of autistic people entering university has increased in Australia and worldwide. While an encouraging trend, autistic students' completion rates remain much lower than non-autistic students in Australia. Perhaps unsurprisingly, numerous studies investigating autistic people?s experiences at universities have identified stigma and discrimination as a significant barrier facing autistic people in higher education. In this study, our team of autistic co-researchers and non-autistic researchers co-produced an in-depth qualitative study to understand the contexts and circumstances in which autistic people felt stigmatised or experienced discrimination at universities in Australia. We interviewed 21 autistic people who either had completed at least one university course, or were studying a university course, or had enrolled in but discontinued at least one university course in Australia. Using reflexive thematic analysis, we identified four themes: (1) 'My disability is something that people just don?t have a clue about', (2) 'the system is really stacked against you', (3) the onus is on autistic students, and (4) 'grit and stubbornness'. Based on these findings, we suggested implementing Universal Design for Learning, neurodiversity-affirming and trauma-informed practices, together with a participatory approach to better design university curricula, processes, and support services for autistic students. Lay Abstract Autistic students experience many challenges at university. One significant barrier identified in past research was autistic students' experiences of discrimination (i.e. being treat differently) and stigma (being judged differently). Our research team included both autistic and non-autistic researchers who designed a project to help explore autistic students' experiences of stigma and discrimination at Australian universities. We interviewed 21 autistic students who went to a university - some had completed qualifications, and some had not. From our interviews, we identified four themes: (1) 'My disability is something that people just don?t have a clue about', (2) 'the system is really stacked against you', (3) the onus is on autistic students, and (4) 'grit and stubbornness'. As a result, we recommended changes in the way courses are written and taught so that autistic people have opportunities that meet their ways of learning. It is also important for university staff to understand the impact of trauma experienced by autistic people and that universities work together with autistic people to design courses and supports that include autistic ways of learning, accessible university processes and identify support needs. En ligne : https://dx.doi.org/10.1177/13623613231219744 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529

Reporting community involvement in autism research: Findings from the journal Autism / Diana Weiting TAN ; Laura CRANE ; Tori HAAR ; Melanie HEYWORTH ; Rebecca POULSEN ; Elizabeth PELLICANO in Autism, 29-2 (February 2025)  

Public ISBD [article]  inAutism > 29-2 (February 2025) . - p.490-503 Titre : Reporting community involvement in autism research: Findings from the journal Autism : Autism Type de document : Texte imprimé et/ou numérique Auteurs : Diana Weiting TAN, Auteur ; Laura CRANE, Auteur ; Tori HAAR, Auteur ; Melanie HEYWORTH, Auteur ; Rebecca POULSEN, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.490-503 Langues : Anglais (eng) Mots-clés : autism  community involvement  participatory research  patient and public involvement  stakeholders Index. décimale : PER Périodiques Résumé : Participatory methods are having sweeping effects on research across the globe. To facilitate transparency around these methods, Autism introduced mandatory reporting of community involvement in January 2021. Here, we sought to determine the impact of this policy. To do so, we - a team of Autistic and non-autistic researchers - searched for articles published in Autism in 2019, 2 years before policy implementation, and in 2022, 1 year after. We read 283 eligible articles and double coded each article for general information and details of community involvement. We found a fivefold increase (10.3% pre-implementation vs 54.5% post-implementation) in the reporting of community involvement. Most articles reported involving community members distally, in consulting roles, with researchers retaining full decision-making power. Furthermore, most community involvement was reported in more applied than basic research. A significant minority of papers (17%), however, could not be coded, owing to insufficient or vague information. While this increase in the reporting of community involvement is encouraging, more efforts need to be directed towards (1) improving the transparency in the reporting of community involvement and (2) increasing the frequency with which community members, especially Autistic people, share decision-making power equally with researchers - or even assume control of the research process. Lay abstract There has been a growing push for the Autistic and autism communities to be more actively involved in autism research. From January 2021, the journal Autism made it a rule for authors to report whether they involved community members in their work; and if they did, how they had done so. In this study, we wanted to see how this new rule has changed things. Our team of Autistic and non-autistic researchers read all 283 articles published in Autism in 2019, about 2 years before the rule was in place, and in 2022, about 1 year after. We recorded what each article was about and how the community was involved. We found there was an increase in how often articles talked about community involvement - from about 10% before the rule to over 50% after. Most of these studies, however, only involved community members giving advice, with the researchers making most decisions about the research. This was especially true for applied research (like wellbeing) rather than basic science (like causes of autism). Also, some of these articles were unclear or did not give enough information for us to understand how the community was involved. This tells us that while it is promising that more community involvement is reported, researchers need to describe this involvement more clearly. It is also important for community members to have a bigger say in research by sharing power with the researchers or even leading the research themselves. En ligne : https://dx.doi.org/10.1177/13623613241275263 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=547 [article] Reporting community involvement in autism research: Findings from the journal Autism : Autism [Texte imprimé et/ou numérique] / Diana Weiting TAN, Auteur ; Laura CRANE, Auteur ; Tori HAAR, Auteur ; Melanie HEYWORTH, Auteur ; Rebecca POULSEN, Auteur ; Elizabeth PELLICANO, Auteur . - p.490-503. Langues : Anglais (eng) in Autism > 29-2 (February 2025) . - p.490-503 Mots-clés : autism  community involvement  participatory research  patient and public involvement  stakeholders Index. décimale : PER Périodiques Résumé : Participatory methods are having sweeping effects on research across the globe. To facilitate transparency around these methods, Autism introduced mandatory reporting of community involvement in January 2021. Here, we sought to determine the impact of this policy. To do so, we - a team of Autistic and non-autistic researchers - searched for articles published in Autism in 2019, 2 years before policy implementation, and in 2022, 1 year after. We read 283 eligible articles and double coded each article for general information and details of community involvement. We found a fivefold increase (10.3% pre-implementation vs 54.5% post-implementation) in the reporting of community involvement. Most articles reported involving community members distally, in consulting roles, with researchers retaining full decision-making power. Furthermore, most community involvement was reported in more applied than basic research. A significant minority of papers (17%), however, could not be coded, owing to insufficient or vague information. While this increase in the reporting of community involvement is encouraging, more efforts need to be directed towards (1) improving the transparency in the reporting of community involvement and (2) increasing the frequency with which community members, especially Autistic people, share decision-making power equally with researchers - or even assume control of the research process. Lay abstract There has been a growing push for the Autistic and autism communities to be more actively involved in autism research. From January 2021, the journal Autism made it a rule for authors to report whether they involved community members in their work; and if they did, how they had done so. In this study, we wanted to see how this new rule has changed things. Our team of Autistic and non-autistic researchers read all 283 articles published in Autism in 2019, about 2 years before the rule was in place, and in 2022, about 1 year after. We recorded what each article was about and how the community was involved. We found there was an increase in how often articles talked about community involvement - from about 10% before the rule to over 50% after. Most of these studies, however, only involved community members giving advice, with the researchers making most decisions about the research. This was especially true for applied research (like wellbeing) rather than basic science (like causes of autism). Also, some of these articles were unclear or did not give enough information for us to understand how the community was involved. This tells us that while it is promising that more community involvement is reported, researchers need to describe this involvement more clearly. It is also important for community members to have a bigger say in research by sharing power with the researchers or even leading the research themselves. En ligne : https://dx.doi.org/10.1177/13623613241275263 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=547

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