Dépouillements

The social model in autism research / Hanna BERTILSDOTTER ROSQVIST in Autism, 29-9 (September 2025)  

Public ISBD [article]  inAutism > 29-9 (September 2025) . - p.2201-2204 Titre : The social model in autism research Type de document : Texte imprimé et/ou numérique Auteurs : Hanna BERTILSDOTTER ROSQVIST, Auteur ; Amy PEARSON, Auteur ; Georgia PAVLOPOULOU, Auteur ; Kristen BOTTEMA-BEUTEL, Auteur Article en page(s) : p.2201-2204 Langues : Anglais (eng) Index. décimale : PER Périodiques En ligne : https://dx.doi.org/10.1177/13623613251357648 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566 [article] The social model in autism research [Texte imprimé et/ou numérique] / Hanna BERTILSDOTTER ROSQVIST, Auteur ; Amy PEARSON, Auteur ; Georgia PAVLOPOULOU, Auteur ; Kristen BOTTEMA-BEUTEL, Auteur . - p.2201-2204. Langues : Anglais (eng) in Autism > 29-9 (September 2025) . - p.2201-2204 Index. décimale : PER Périodiques En ligne : https://dx.doi.org/10.1177/13623613251357648 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566

'Building our own house' as an insider-only Community-Partnered Participatory Research Council: Co-creating a safe space for Autistic knowledge production / Gemma L WILLIAMS in Autism, 29-9 (September 2025)  

Public ISBD [article]  inAutism > 29-9 (September 2025) . - p.2205-2215 Titre : 'Building our own house' as an insider-only Community-Partnered Participatory Research Council: Co-creating a safe space for Autistic knowledge production Type de document : Texte imprimé et/ou numérique Auteurs : Gemma L WILLIAMS, Auteur ; Rebecca ELLIS, Auteur ; Willow HOLLOWAY, Auteur ; Selena CAEMAWR, Auteur ; Monique CRAINE, Auteur ; Kathryn WILLIAMS, Auteur ; Aimee GRANT, Auteur Article en page(s) : p.2205-2215 Langues : Anglais (eng) Mots-clés : action research  autism  community-based participatory research  participatory action research  participatory research  qualitative research Index. décimale : PER Périodiques Résumé : This article describes and reflects on the first six meetings of a newly established Autistic community council, founded to steer a participatory, longitudinal qualitative study investigating the reproductive health of Autistic people with wombs. The two key aims of these initial six meetings - involving four Autistic community leader members and three Autistic researchers - was to (1) guide the start of the project and the development of accessible recruitment materials for the future eight lay members and (2) establish a safe space and a model of accessible communication. We draw on extracts from transcripts made during meetings, member 'field' notes and a reflexive co-writing practice to identify the ways in which a sense of safety was built during these first community council meetings. We explore what it means to be an insider-only Community Partnered Participatory Research Council and reflect on the praxis we developed to facilitate Autistic knowledge production.Lay Abstract In recent years, there has been a growing call for participatory Autism research (i.e. research that meaningfully involves Autistic people in its design and delivery). Community Partnered Participatory Research is a research methodology that aims to share power between researchers and members of the researched community. There is some precedent for Community Partnered Participatory Research in Autism research, but it is still quite uncommon. At the start of our new research study (called Autism: From Menstruation to Menopause), we created a community council. For the first six meetings, our council was made up of four Autistic community members who were experienced in Autism advocacy and activism and three Autistic researchers. We seven are the authors of this article. In these first six meetings, we made plans for recruiting a larger number of lay community members who would join us later for the rest of the project (8?years in total). In this article, we describe and reflect what it felt like during these first six meetings to be part of a community research council where everybody is Autistic. We discuss how we co-created a safe space, how we helped each other feel valued and how we worked together to support each other?s sometimes-differing access needs so that everyone could fully participate. We provide recommendations for how to support Autistic people to lead research on their own terms with their unique insights. En ligne : https://dx.doi.org/10.1177/13623613241253014 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566 [article] 'Building our own house' as an insider-only Community-Partnered Participatory Research Council: Co-creating a safe space for Autistic knowledge production [Texte imprimé et/ou numérique] / Gemma L WILLIAMS, Auteur ; Rebecca ELLIS, Auteur ; Willow HOLLOWAY, Auteur ; Selena CAEMAWR, Auteur ; Monique CRAINE, Auteur ; Kathryn WILLIAMS, Auteur ; Aimee GRANT, Auteur . - p.2205-2215. Langues : Anglais (eng) in Autism > 29-9 (September 2025) . - p.2205-2215 Mots-clés : action research  autism  community-based participatory research  participatory action research  participatory research  qualitative research Index. décimale : PER Périodiques Résumé : This article describes and reflects on the first six meetings of a newly established Autistic community council, founded to steer a participatory, longitudinal qualitative study investigating the reproductive health of Autistic people with wombs. The two key aims of these initial six meetings - involving four Autistic community leader members and three Autistic researchers - was to (1) guide the start of the project and the development of accessible recruitment materials for the future eight lay members and (2) establish a safe space and a model of accessible communication. We draw on extracts from transcripts made during meetings, member 'field' notes and a reflexive co-writing practice to identify the ways in which a sense of safety was built during these first community council meetings. We explore what it means to be an insider-only Community Partnered Participatory Research Council and reflect on the praxis we developed to facilitate Autistic knowledge production.Lay Abstract In recent years, there has been a growing call for participatory Autism research (i.e. research that meaningfully involves Autistic people in its design and delivery). Community Partnered Participatory Research is a research methodology that aims to share power between researchers and members of the researched community. There is some precedent for Community Partnered Participatory Research in Autism research, but it is still quite uncommon. At the start of our new research study (called Autism: From Menstruation to Menopause), we created a community council. For the first six meetings, our council was made up of four Autistic community members who were experienced in Autism advocacy and activism and three Autistic researchers. We seven are the authors of this article. In these first six meetings, we made plans for recruiting a larger number of lay community members who would join us later for the rest of the project (8?years in total). In this article, we describe and reflect what it felt like during these first six meetings to be part of a community research council where everybody is Autistic. We discuss how we co-created a safe space, how we helped each other feel valued and how we worked together to support each other?s sometimes-differing access needs so that everyone could fully participate. We provide recommendations for how to support Autistic people to lead research on their own terms with their unique insights. En ligne : https://dx.doi.org/10.1177/13623613241253014 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566

'Does that mean you will be violent?': A qualitative exploration into Autistic women?s experiences of relationships with lecturers at university / Sophie PHILLIPS in Autism, 29-9 (September 2025)  

Public ISBD [article]  inAutism > 29-9 (September 2025) . - p.2216-2227 Titre : 'Does that mean you will be violent?': A qualitative exploration into Autistic women?s experiences of relationships with lecturers at university Type de document : Texte imprimé et/ou numérique Auteurs : Sophie PHILLIPS, Auteur Article en page(s) : p.2216-2227 Langues : Anglais (eng) Mots-clés : autism  relationships  stigma  women Index. décimale : PER Périodiques Résumé : The experiences of Autistic1 women students at university are seldom explored. In this paper, women refers to anyone who self-identifies as a woman. Eleven Autistic women students participated in artefact creation and semi-structured interviews exploring their experiences with university lecturers. All data centred on their opinions and lived experiences. Five participants were undergraduate students and six participants were postgraduate students. Data were analysed by thematic analysis and data was categorised into two themes. These themes were: 'Lecturer Impact' and 'Autism Awareness and Acceptance'. 'Lecturer Impact' centred around both positive relationships participants had at university with their lecturers, and how they navigated ingrained stigmas about autism that some lecturers held. 'Autism Awareness and Acceptance' included the ways in which knowledge about autism in women and a reduction in stigma could be achieved at university, primarily by incorporating the voices of Autistic women students. The findings suggest that Autistic women students' positive relationships with lecturers are key to success. This was supported by participants wanting their opinions and lived experience to be valued particularly to assist with raising a university culture of autism acceptance. An inclusive environment at university, including Autistic women students is needed to improve positive experiences at university.Lay abstract It is documented that more Autistic woman are becoming university students, but their experiences are not often explored. Eleven Autistic women students made artefacts (such as writing, paintings or poems) and took part in interviews to share their experiences at university. Five participants were undergraduate students and six participants were postgraduate students. The artefacts and words participants shared were looked at closely and some common themes were decided. How lecturers talk to Autistic women students was looked at. Participants said they were lucky if they met helpful lecturers. Also, autism acceptance was explored. Overall, how lecturers treat Autistic women at university is very important. Also, Autistic women students' opinions about making university a more welcoming place need to be listened to. En ligne : https://dx.doi.org/10.1177/13623613241264887 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566 [article] 'Does that mean you will be violent?': A qualitative exploration into Autistic women?s experiences of relationships with lecturers at university [Texte imprimé et/ou numérique] / Sophie PHILLIPS, Auteur . - p.2216-2227. Langues : Anglais (eng) in Autism > 29-9 (September 2025) . - p.2216-2227 Mots-clés : autism  relationships  stigma  women Index. décimale : PER Périodiques Résumé : The experiences of Autistic1 women students at university are seldom explored. In this paper, women refers to anyone who self-identifies as a woman. Eleven Autistic women students participated in artefact creation and semi-structured interviews exploring their experiences with university lecturers. All data centred on their opinions and lived experiences. Five participants were undergraduate students and six participants were postgraduate students. Data were analysed by thematic analysis and data was categorised into two themes. These themes were: 'Lecturer Impact' and 'Autism Awareness and Acceptance'. 'Lecturer Impact' centred around both positive relationships participants had at university with their lecturers, and how they navigated ingrained stigmas about autism that some lecturers held. 'Autism Awareness and Acceptance' included the ways in which knowledge about autism in women and a reduction in stigma could be achieved at university, primarily by incorporating the voices of Autistic women students. The findings suggest that Autistic women students' positive relationships with lecturers are key to success. This was supported by participants wanting their opinions and lived experience to be valued particularly to assist with raising a university culture of autism acceptance. An inclusive environment at university, including Autistic women students is needed to improve positive experiences at university.Lay abstract It is documented that more Autistic woman are becoming university students, but their experiences are not often explored. Eleven Autistic women students made artefacts (such as writing, paintings or poems) and took part in interviews to share their experiences at university. Five participants were undergraduate students and six participants were postgraduate students. The artefacts and words participants shared were looked at closely and some common themes were decided. How lecturers talk to Autistic women students was looked at. Participants said they were lucky if they met helpful lecturers. Also, autism acceptance was explored. Overall, how lecturers treat Autistic women at university is very important. Also, Autistic women students' opinions about making university a more welcoming place need to be listened to. En ligne : https://dx.doi.org/10.1177/13623613241264887 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566

'It just feels unnatural being here': Autistic secondary school students' experiences of sensory sensitivities in the school environment / Jennifer PRICE in Autism, 29-9 (September 2025)  

Public ISBD [article]  inAutism > 29-9 (September 2025) . - p.2228-2238 Titre : 'It just feels unnatural being here': Autistic secondary school students' experiences of sensory sensitivities in the school environment Type de document : Texte imprimé et/ou numérique Auteurs : Jennifer PRICE, Auteur ; Anna Mel ROMUALDEZ, Auteur Article en page(s) : p.2228-2238 Langues : Anglais (eng) Mots-clés : adolescents  autism  education services  neuroaffirmative  neurodiversity  qualitative research  school environment  school-age children  sensory differences  sensory sensitivities Index. décimale : PER Périodiques Résumé : Autistic young people often struggle to cope with the daily demands of school and are likelier to experience poorer wellbeing and educational outcomes than their non-autistic peers. Among other factors, this may be because mainstream settings are unsuitable for individuals' sensory needs. Evidence suggests the unpredictable multi-sensory nature of school can elicit sensory distress, adversely affecting behaviour and learning. However, existing literature has primarily taken a top-down deductive approach and largely neglected autistic voices. The present study, therefore, employed a participatory approach and photo-voice semi-structured interview method to explore autistic students' sensory experiences in a mainstream secondary school in the U.K. The sample consisted of six students aged 12-16?years with a clinical diagnosis of autism attending a state comprehensive school in Suffolk, U.K. Through reflexive thematic analysis, three main themes were identified: (1) impact of the school environment; (2) the importance of safe spaces and (3) levels of support and understanding. This study?s findings suggest autistic students are routinely overstimulated, overwhelmed and lack adequate support to overcome sensory barriers in mainstream settings. This study has implications for further participatory research and inclusive practice to ensure better educational experiences and outcomes for autistic young people.Lay Abstract Autistic young people often struggle to manage and respond to sensory stimuli within the school environment, impacting wellbeing, energy levels and the ability to learn. We asked six autistic students aged 12-16?years about their sensory experiences at secondary school. Specifically, we asked students to photograph areas in school that they positively and negatively associated with sensory stimulation, and follow-up interviews focused on these photographs and individuals' sensory experiences. Many studies previously examined the sensory impact of school on autistic children. However, few studies have considered how autistic children think and feel about how their sensory differences affect them in school. Therefore, this study aimed to investigate autistic students' firsthand accounts of sensory challenges within a secondary state school in the U.K. Students spoke about the detrimental effects of the school environment on their sensory needs and the importance of quiet spaces to recharge. Students also described a lack of consistent and adequate support to overcome daily sensory barriers. Generally, participants desired acceptance and understanding of their autistic identity and differences. This study has implications for future practice and research. With increasing numbers of autistic children attending mainstream schools, central and local governments must increase funding and support to equip schools and staff with the necessary training and resources to meet autistic students' sensory needs. Increased provision of quiet rooms and low-cost environmental modifications (such as replacing fluorescent lighting) may also reduce sensory distress. Despite its complexities, empowering autistic young people to have their say is essential and may improve long-term outcomes. En ligne : https://dx.doi.org/10.1177/13623613251333860 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566 [article] 'It just feels unnatural being here': Autistic secondary school students' experiences of sensory sensitivities in the school environment [Texte imprimé et/ou numérique] / Jennifer PRICE, Auteur ; Anna Mel ROMUALDEZ, Auteur . - p.2228-2238. Langues : Anglais (eng) in Autism > 29-9 (September 2025) . - p.2228-2238 Mots-clés : adolescents  autism  education services  neuroaffirmative  neurodiversity  qualitative research  school environment  school-age children  sensory differences  sensory sensitivities Index. décimale : PER Périodiques Résumé : Autistic young people often struggle to cope with the daily demands of school and are likelier to experience poorer wellbeing and educational outcomes than their non-autistic peers. Among other factors, this may be because mainstream settings are unsuitable for individuals' sensory needs. Evidence suggests the unpredictable multi-sensory nature of school can elicit sensory distress, adversely affecting behaviour and learning. However, existing literature has primarily taken a top-down deductive approach and largely neglected autistic voices. The present study, therefore, employed a participatory approach and photo-voice semi-structured interview method to explore autistic students' sensory experiences in a mainstream secondary school in the U.K. The sample consisted of six students aged 12-16?years with a clinical diagnosis of autism attending a state comprehensive school in Suffolk, U.K. Through reflexive thematic analysis, three main themes were identified: (1) impact of the school environment; (2) the importance of safe spaces and (3) levels of support and understanding. This study?s findings suggest autistic students are routinely overstimulated, overwhelmed and lack adequate support to overcome sensory barriers in mainstream settings. This study has implications for further participatory research and inclusive practice to ensure better educational experiences and outcomes for autistic young people.Lay Abstract Autistic young people often struggle to manage and respond to sensory stimuli within the school environment, impacting wellbeing, energy levels and the ability to learn. We asked six autistic students aged 12-16?years about their sensory experiences at secondary school. Specifically, we asked students to photograph areas in school that they positively and negatively associated with sensory stimulation, and follow-up interviews focused on these photographs and individuals' sensory experiences. Many studies previously examined the sensory impact of school on autistic children. However, few studies have considered how autistic children think and feel about how their sensory differences affect them in school. Therefore, this study aimed to investigate autistic students' firsthand accounts of sensory challenges within a secondary state school in the U.K. Students spoke about the detrimental effects of the school environment on their sensory needs and the importance of quiet spaces to recharge. Students also described a lack of consistent and adequate support to overcome daily sensory barriers. Generally, participants desired acceptance and understanding of their autistic identity and differences. This study has implications for future practice and research. With increasing numbers of autistic children attending mainstream schools, central and local governments must increase funding and support to equip schools and staff with the necessary training and resources to meet autistic students' sensory needs. Increased provision of quiet rooms and low-cost environmental modifications (such as replacing fluorescent lighting) may also reduce sensory distress. Despite its complexities, empowering autistic young people to have their say is essential and may improve long-term outcomes. En ligne : https://dx.doi.org/10.1177/13623613251333860 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566

'A certain magic' - autistic adults' experiences of interacting with other autistic people and its relation to Quality of Life: A systematic review and thematic meta-synthesis / Georgina WATTS in Autism, 29-9 (September 2025)  

Public ISBD [article]  inAutism > 29-9 (September 2025) . - p.2239-2253 Titre : 'A certain magic' - autistic adults' experiences of interacting with other autistic people and its relation to Quality of Life: A systematic review and thematic meta-synthesis Type de document : Texte imprimé et/ou numérique Auteurs : Georgina WATTS, Auteur ; Catherine CROMPTON, Auteur ; Catherine GRAINGER, Auteur ; Joseph LONG, Auteur ; Monique BOTHA, Auteur ; Mark SOMERVILLE, Auteur ; Eilidh CAGE, Auteur Article en page(s) : p.2239-2253 Langues : Anglais (eng) Mots-clés : autism  autistic culture  double empathy  mental health  peer support  qualitative synthesis  Quality of Life  social communication  systematic review Index. décimale : PER Périodiques Résumé : There is an increasing focus on research exploring autistic communication and community. In this review, we systematically collate and analyse how autistic adults describe their experiences of other autistic people and the relationship this has with their Quality of Life (QoL). Fifty two qualitative papers were analysed using thematic meta-synthesis. Results found many experiences of other autistic people were positive and were associated with improved QoL across a range of domains. The heterogeneity of the autistic experiences described indicates a need for further research to explore which factors predict a positive impact on QoL. Analysis also highlighted a paucity of data on autistic people with co-occurring intellectual disability in relation to this phenomenon. Implications for research and practice are discussed.Lay abstract Research has suggested that autistic people enjoy spending time with other autistic people and find them easier to talk to. We wanted to find out what autistic people say about spending time with other autistic people and whether this makes their life better. We found 52 papers which described this and reviewed what they found. We found that many autistic people had positive experiences of spending time with other autistic people and these experiences had positive impact on their lives in a range of different ways. The papers did not tell us whether this also happens for autistic people with a learning disability. More research is needed to find out more about why spending time with other autistic people helps some autistic people. En ligne : https://dx.doi.org/10.1177/13623613241255811 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566 [article] 'A certain magic' - autistic adults' experiences of interacting with other autistic people and its relation to Quality of Life: A systematic review and thematic meta-synthesis [Texte imprimé et/ou numérique] / Georgina WATTS, Auteur ; Catherine CROMPTON, Auteur ; Catherine GRAINGER, Auteur ; Joseph LONG, Auteur ; Monique BOTHA, Auteur ; Mark SOMERVILLE, Auteur ; Eilidh CAGE, Auteur . - p.2239-2253. Langues : Anglais (eng) in Autism > 29-9 (September 2025) . - p.2239-2253 Mots-clés : autism  autistic culture  double empathy  mental health  peer support  qualitative synthesis  Quality of Life  social communication  systematic review Index. décimale : PER Périodiques Résumé : There is an increasing focus on research exploring autistic communication and community. In this review, we systematically collate and analyse how autistic adults describe their experiences of other autistic people and the relationship this has with their Quality of Life (QoL). Fifty two qualitative papers were analysed using thematic meta-synthesis. Results found many experiences of other autistic people were positive and were associated with improved QoL across a range of domains. The heterogeneity of the autistic experiences described indicates a need for further research to explore which factors predict a positive impact on QoL. Analysis also highlighted a paucity of data on autistic people with co-occurring intellectual disability in relation to this phenomenon. Implications for research and practice are discussed.Lay abstract Research has suggested that autistic people enjoy spending time with other autistic people and find them easier to talk to. We wanted to find out what autistic people say about spending time with other autistic people and whether this makes their life better. We found 52 papers which described this and reviewed what they found. We found that many autistic people had positive experiences of spending time with other autistic people and these experiences had positive impact on their lives in a range of different ways. The papers did not tell us whether this also happens for autistic people with a learning disability. More research is needed to find out more about why spending time with other autistic people helps some autistic people. En ligne : https://dx.doi.org/10.1177/13623613241255811 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566

'We have so much to offer': Community members' perspectives on autism research / Tori HAAR in Autism, 29-9 (September 2025)  

Public ISBD [article]  inAutism > 29-9 (September 2025) . - p.2254-2267 Titre : 'We have so much to offer': Community members' perspectives on autism research Type de document : Texte imprimé et/ou numérique Auteurs : Tori HAAR, Auteur ; Charlotte BROWNLOW, Auteur ; Gabrielle HALL, Auteur ; Melanie HEYWORTH, Auteur ; Wenn LAWSON, Auteur ; Rebecca POULSEN, Auteur ; Tamara REINISCH, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.2254-2267 Langues : Anglais (eng) Mots-clés : engagement  neurodiversity  participatory research  translational research Index. décimale : PER Périodiques Résumé : Autism research is on the cusp of significant change. There are mounting calls from Autistic self-advocates, researchers, and other scientists for a paradigm shift in autism research. Yet little is known about what non-academic members of the Autistic and autism communities think about autism research. We - a team of Autistic and non-autistic researchers - addressed this gap by conducting a secondary analysis of data collected as part of an in-depth research priority-setting exercise in Australia. Specifically, we asked: what are community members' views and experiences of autism research? In immersive online text-based focus-group discussions held over 10 days, 55 community members, including Autistic people, family members, and professionals, shared their perspectives and experiences of autism research. We analysed the data using reflexive thematic analysis, adopting an inductive approach. Respondents resoundingly agreed that autism research could play a powerful role in helping to shape good Autistic lives, yet they felt that to do that effectively, major changes were needed. These included a shift away from overly narrow, deficits-based views of Autistic people to a greater focus on contextual factors, and more community-led decisions in what is researched and how. These findings highlight new possibilities for research processes, findings, and translation.Lay Abstract Autism research is changing. Autistic activists and researchers want Autistic people in the community to have more of a say about what is researched and how. But we haven?t asked people in the community what they think. This study used the information obtained from 55 community members, including Autistic people, their families, and professionals working with Autistic people, from an existing study on their priorities for autism research. We re-looked at what was said to see if we could understand community members' views and experiences of autism research. People agreed strongly that research can play a powerful role in shaping good Autistic lives. They also felt that big changes were needed for research to do this. Some of these changes were that researchers should stop thinking about autism narrowly and in a negative way, where Autistic people are seen as the problem. Researchers need to think more about how to improve systems, experiences and how other people respond to Autistic people. They also want the autism community to be more involved in what is researched and how it is researched. The findings from our study here highlight the potential for research to be positive when Autistic people and their families are listened to, approached with understanding, and are respected and valued as individuals in the research process. En ligne : https://dx.doi.org/10.1177/13623613241248713 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566 [article] 'We have so much to offer': Community members' perspectives on autism research [Texte imprimé et/ou numérique] / Tori HAAR, Auteur ; Charlotte BROWNLOW, Auteur ; Gabrielle HALL, Auteur ; Melanie HEYWORTH, Auteur ; Wenn LAWSON, Auteur ; Rebecca POULSEN, Auteur ; Tamara REINISCH, Auteur ; Elizabeth PELLICANO, Auteur . - p.2254-2267. Langues : Anglais (eng) in Autism > 29-9 (September 2025) . - p.2254-2267 Mots-clés : engagement  neurodiversity  participatory research  translational research Index. décimale : PER Périodiques Résumé : Autism research is on the cusp of significant change. There are mounting calls from Autistic self-advocates, researchers, and other scientists for a paradigm shift in autism research. Yet little is known about what non-academic members of the Autistic and autism communities think about autism research. We - a team of Autistic and non-autistic researchers - addressed this gap by conducting a secondary analysis of data collected as part of an in-depth research priority-setting exercise in Australia. Specifically, we asked: what are community members' views and experiences of autism research? In immersive online text-based focus-group discussions held over 10 days, 55 community members, including Autistic people, family members, and professionals, shared their perspectives and experiences of autism research. We analysed the data using reflexive thematic analysis, adopting an inductive approach. Respondents resoundingly agreed that autism research could play a powerful role in helping to shape good Autistic lives, yet they felt that to do that effectively, major changes were needed. These included a shift away from overly narrow, deficits-based views of Autistic people to a greater focus on contextual factors, and more community-led decisions in what is researched and how. These findings highlight new possibilities for research processes, findings, and translation.Lay Abstract Autism research is changing. Autistic activists and researchers want Autistic people in the community to have more of a say about what is researched and how. But we haven?t asked people in the community what they think. This study used the information obtained from 55 community members, including Autistic people, their families, and professionals working with Autistic people, from an existing study on their priorities for autism research. We re-looked at what was said to see if we could understand community members' views and experiences of autism research. People agreed strongly that research can play a powerful role in shaping good Autistic lives. They also felt that big changes were needed for research to do this. Some of these changes were that researchers should stop thinking about autism narrowly and in a negative way, where Autistic people are seen as the problem. Researchers need to think more about how to improve systems, experiences and how other people respond to Autistic people. They also want the autism community to be more involved in what is researched and how it is researched. The findings from our study here highlight the potential for research to be positive when Autistic people and their families are listened to, approached with understanding, and are respected and valued as individuals in the research process. En ligne : https://dx.doi.org/10.1177/13623613241248713 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566

A mixed-methods study of autistic and non-autistic community member participation in autism research / Sarah L CURTISS in Autism, 29-9 (September 2025)  

Public ISBD [article]  inAutism > 29-9 (September 2025) . - p.2268-2281 Titre : A mixed-methods study of autistic and non-autistic community member participation in autism research Type de document : Texte imprimé et/ou numérique Auteurs : Sarah L CURTISS, Auteur ; Sarah TILLMAN, Auteur ; Majd SUBIH, Auteur ; Kaitlyn MYERS, Auteur Article en page(s) : p.2268-2281 Langues : Anglais (eng) Mots-clés : autism spectrum disorders  qualitative research Index. décimale : PER Périodiques Résumé : Participatory research is one pathway for advancing the agenda of autistic advocates; however, little is known about the attitudes and values of autism researchers toward participatory research. This is a participatory research mixed-methods study of 215 survey respondents and 21 interviewees, all corresponding authors of published autism research papers. Our aim was to identify attitudes and practices about participatory research with autistic and non-autistic community partners. We found relatively low rates of various participatory strategies, moderate rates of barriers to participatory research, and moderate endorsement of the importance of participatory research. The interviews elucidated participatory research?s best practices, complexity of barriers, and transformative power to positively impact autism research. Interviewees discussed the connection between participatory research and decisions about language. The survey responses indicated that 30% of autism researchers never used identity-first language. An emergent theme from the interviews explored the unique contribution of insider research-research in which an autistic person brings their expertise derived from lived experience and formal research training. This research provides descriptions of the current state of participatory autism research and guidance for its utilization.Lay Abstract Participatory research is a way for autistic advocates, other community advocates, and researchers to work together for the benefit of the autistic community. Participatory research is when community members are partners throughout the research process, for example, selecting research questions, determining research methods, and interpreting results. However, little is known about autism researchers' attitudes and values about participatory research. This research describes the participatory research strategies autism researchers use, researchers' attitudes toward participatory research, and researchers' insights into best practices in participatory research. We looked at participatory autism research involving autistic people and non-autistic people who are connected to the autistic community, such as parents and teachers of autistic people. We surveyed 215 autism researchers to find out how much autism research is participatory, how important autism researchers think participatory research is, and what barriers get in the way of doing participatory autism research. On average, researchers who responded to the survey reported relatively low rates of participatory research, medium rates of barriers to participatory research, and medium agreement on the value of participatory research. The survey also asked what language they use regarding autism; a significant proportion of researchers in the study reported never using identity-first language (e.g., autistic person, as opposed to person-first language; person with autism). We also interviewed 21 of the researchers who responded to the survey. The interviews covered topics such as possible strategies to increase participatory research, examples of barriers to participatory research, and the interviewees' views on the importance of participatory research. Interviewees also discussed the connection between participatory research and decisions about language regarding autism. Several interviewees talked about the unique contributions of autistic academics, who have both lived experience as autistic people and formal research training. En ligne : https://dx.doi.org/10.1177/13623613251348543 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566 [article] A mixed-methods study of autistic and non-autistic community member participation in autism research [Texte imprimé et/ou numérique] / Sarah L CURTISS, Auteur ; Sarah TILLMAN, Auteur ; Majd SUBIH, Auteur ; Kaitlyn MYERS, Auteur . - p.2268-2281. Langues : Anglais (eng) in Autism > 29-9 (September 2025) . - p.2268-2281 Mots-clés : autism spectrum disorders  qualitative research Index. décimale : PER Périodiques Résumé : Participatory research is one pathway for advancing the agenda of autistic advocates; however, little is known about the attitudes and values of autism researchers toward participatory research. This is a participatory research mixed-methods study of 215 survey respondents and 21 interviewees, all corresponding authors of published autism research papers. Our aim was to identify attitudes and practices about participatory research with autistic and non-autistic community partners. We found relatively low rates of various participatory strategies, moderate rates of barriers to participatory research, and moderate endorsement of the importance of participatory research. The interviews elucidated participatory research?s best practices, complexity of barriers, and transformative power to positively impact autism research. Interviewees discussed the connection between participatory research and decisions about language. The survey responses indicated that 30% of autism researchers never used identity-first language. An emergent theme from the interviews explored the unique contribution of insider research-research in which an autistic person brings their expertise derived from lived experience and formal research training. This research provides descriptions of the current state of participatory autism research and guidance for its utilization.Lay Abstract Participatory research is a way for autistic advocates, other community advocates, and researchers to work together for the benefit of the autistic community. Participatory research is when community members are partners throughout the research process, for example, selecting research questions, determining research methods, and interpreting results. However, little is known about autism researchers' attitudes and values about participatory research. This research describes the participatory research strategies autism researchers use, researchers' attitudes toward participatory research, and researchers' insights into best practices in participatory research. We looked at participatory autism research involving autistic people and non-autistic people who are connected to the autistic community, such as parents and teachers of autistic people. We surveyed 215 autism researchers to find out how much autism research is participatory, how important autism researchers think participatory research is, and what barriers get in the way of doing participatory autism research. On average, researchers who responded to the survey reported relatively low rates of participatory research, medium rates of barriers to participatory research, and medium agreement on the value of participatory research. The survey also asked what language they use regarding autism; a significant proportion of researchers in the study reported never using identity-first language (e.g., autistic person, as opposed to person-first language; person with autism). We also interviewed 21 of the researchers who responded to the survey. The interviews covered topics such as possible strategies to increase participatory research, examples of barriers to participatory research, and the interviewees' views on the importance of participatory research. Interviewees also discussed the connection between participatory research and decisions about language regarding autism. Several interviewees talked about the unique contributions of autistic academics, who have both lived experience as autistic people and formal research training. En ligne : https://dx.doi.org/10.1177/13623613251348543 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566

Autistic and autism community perspectives on infant and family support in the first two years of life: Findings from a community consultation survey / Catherine A BENT in Autism, 29-9 (September 2025)  

Public ISBD [article]  inAutism > 29-9 (September 2025) . - p.2282-2296 Titre : Autistic and autism community perspectives on infant and family support in the first two years of life: Findings from a community consultation survey Type de document : Texte imprimé et/ou numérique Auteurs : Catherine A BENT, Auteur ; Alexandra AULICH, Auteur ; Christos CONSTANTINE, Auteur ; Esther FIDOCK, Auteur ; Patrick DWYER, Auteur ; Cherie GREEN, Auteur ; Jodie SMITH, Auteur ; Ava N GURBA, Auteur ; Lucas T HARRINGTON, Auteur ; Katherine E GORE, Auteur ; Aspasia Stacey RABBA, Auteur ; Lauren N AYTON, Auteur ; Kathryn FORDYCE, Auteur ; Jonathan GREEN, Auteur ; Rachel JELLETT, Auteur ; Lyndel J KENNEDY, Auteur ; Katherine E MACDUFFIE, Auteur ; Shoba S MEERA, Auteur ; Linda R WATSON, Auteur ; Andrew JO WHITEHOUSE, Auteur ; Kristelle HUDRY, Auteur Article en page(s) : p.2282-2296 Langues : Anglais (eng) Mots-clés : autism  autistic  infancy  intervention  neurodiversity  parenting  participatory research  support Index. décimale : PER Périodiques Résumé : Emerging evidence suggests parenting supports implemented in the first 2 years of life may influence developmental outcomes for infants more likely to be Autistic. Yet questions remain about acceptability of these supports to the Autistic and autism communities. Through mixed-methods participatory research - co-designed and produced by Autistic and non-Autistic researchers - we sought diverse community perspectives on this topic, including to understand the relative acceptability of different support options. A total of 238 participants completed our online survey: 128 Autistic and 110 non-Autistic respondents, some of whom also self-identified as parents of Autistic, otherwise neurodivergent, and/or neurotypical children, and/or as health/education professionals and/or researchers. Most participants agreed that very-early-in-life approaches should help parents understand and support their children, and disagreed that these should seek to suppress autistic behaviour. Most agreed with the goal of respecting infant autonomy, and that parent education towards creating sensitive, accommodating environments could be appropriate, albeit with nuanced differences-of-opinion regarding the acceptability of specific therapeutic approaches. Participants generally endorsed the terms 'support' (vs 'intervention') and 'early-in-life' (vs 'at-risk'/'pre-emptive'). Engaging equal-power partnerships for the development, delivery of, and discourse around early-in-life autism supports will ensure end-user community values and needs are respected.Lay abstract Most support programmes for Autistic children are available only after they are diagnosed. Research suggests that parenting supports may be helpful for parents and their infants, when provided in the first 2 years of life - before a formal diagnosis is given, but when information suggests an infant is more likely to be Autistic. However, we do not know how acceptable these types of supports might be to the Autistic and autism communities. We asked 238 Autistic and non-autistic people - some of whom were parents, and some of whom were professionals working in research, health and education - about their perspectives on very-early supports. People generally agreed that it could be acceptable to work with parents to help them understand and support their child?s specific needs and unique ways of communicating. People suggested a variety of support strategies could be acceptable, including parent education, changing the environment to meet an infant?s needs, and creating opportunities for infants' to make choices and exercise control. People preferred respectful and accurate language - including the term 'support' (rather than 'intervention') and 'early-in-life' (rather than 'at-risk' of autism, or 'pre-emptive' when describing developmental stage). Continuing to work with community members will help to make sure autism support programmes are relevant and helpful. En ligne : https://dx.doi.org/10.1177/13623613241262077 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566 [article] Autistic and autism community perspectives on infant and family support in the first two years of life: Findings from a community consultation survey [Texte imprimé et/ou numérique] / Catherine A BENT, Auteur ; Alexandra AULICH, Auteur ; Christos CONSTANTINE, Auteur ; Esther FIDOCK, Auteur ; Patrick DWYER, Auteur ; Cherie GREEN, Auteur ; Jodie SMITH, Auteur ; Ava N GURBA, Auteur ; Lucas T HARRINGTON, Auteur ; Katherine E GORE, Auteur ; Aspasia Stacey RABBA, Auteur ; Lauren N AYTON, Auteur ; Kathryn FORDYCE, Auteur ; Jonathan GREEN, Auteur ; Rachel JELLETT, Auteur ; Lyndel J KENNEDY, Auteur ; Katherine E MACDUFFIE, Auteur ; Shoba S MEERA, Auteur ; Linda R WATSON, Auteur ; Andrew JO WHITEHOUSE, Auteur ; Kristelle HUDRY, Auteur . - p.2282-2296. Langues : Anglais (eng) in Autism > 29-9 (September 2025) . - p.2282-2296 Mots-clés : autism  autistic  infancy  intervention  neurodiversity  parenting  participatory research  support Index. décimale : PER Périodiques Résumé : Emerging evidence suggests parenting supports implemented in the first 2 years of life may influence developmental outcomes for infants more likely to be Autistic. Yet questions remain about acceptability of these supports to the Autistic and autism communities. Through mixed-methods participatory research - co-designed and produced by Autistic and non-Autistic researchers - we sought diverse community perspectives on this topic, including to understand the relative acceptability of different support options. A total of 238 participants completed our online survey: 128 Autistic and 110 non-Autistic respondents, some of whom also self-identified as parents of Autistic, otherwise neurodivergent, and/or neurotypical children, and/or as health/education professionals and/or researchers. Most participants agreed that very-early-in-life approaches should help parents understand and support their children, and disagreed that these should seek to suppress autistic behaviour. Most agreed with the goal of respecting infant autonomy, and that parent education towards creating sensitive, accommodating environments could be appropriate, albeit with nuanced differences-of-opinion regarding the acceptability of specific therapeutic approaches. Participants generally endorsed the terms 'support' (vs 'intervention') and 'early-in-life' (vs 'at-risk'/'pre-emptive'). Engaging equal-power partnerships for the development, delivery of, and discourse around early-in-life autism supports will ensure end-user community values and needs are respected.Lay abstract Most support programmes for Autistic children are available only after they are diagnosed. Research suggests that parenting supports may be helpful for parents and their infants, when provided in the first 2 years of life - before a formal diagnosis is given, but when information suggests an infant is more likely to be Autistic. However, we do not know how acceptable these types of supports might be to the Autistic and autism communities. We asked 238 Autistic and non-autistic people - some of whom were parents, and some of whom were professionals working in research, health and education - about their perspectives on very-early supports. People generally agreed that it could be acceptable to work with parents to help them understand and support their child?s specific needs and unique ways of communicating. People suggested a variety of support strategies could be acceptable, including parent education, changing the environment to meet an infant?s needs, and creating opportunities for infants' to make choices and exercise control. People preferred respectful and accurate language - including the term 'support' (rather than 'intervention') and 'early-in-life' (rather than 'at-risk' of autism, or 'pre-emptive' when describing developmental stage). Continuing to work with community members will help to make sure autism support programmes are relevant and helpful. En ligne : https://dx.doi.org/10.1177/13623613241262077 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566

Community views of neurodiversity, models of disability and autism intervention: Mixed methods reveal shared goals and key tensions / Patrick DWYER in Autism, 29-9 (September 2025)  

Public ISBD [article]  inAutism > 29-9 (September 2025) . - p.2297-2314 Titre : Community views of neurodiversity, models of disability and autism intervention: Mixed methods reveal shared goals and key tensions Type de document : Texte imprimé et/ou numérique Auteurs : Patrick DWYER, Auteur ; Ava N GURBA, Auteur ; Steven K KAPP, Auteur ; Elizabeth KILGALLON, Auteur ; Lynnette H HERSH, Auteur ; David S CHANG, Auteur ; Susan M RIVERA, Auteur ; Kristen GILLESPIE-LYNCH, Auteur Article en page(s) : p.2297-2314 Langues : Anglais (eng) Mots-clés : autism  intervention goals  neurodiversity  normalization  social model Index. décimale : PER Périodiques Résumé : Controversies regarding the neurodiversity movement may be exacerbated by confusion over its meaning. For example, some suggest neurodiversity entails acceptance of the social model, whereas others describe it as more nuanced. We aimed to help resolve conflicting viewpoints by inviting insights from 504 autistic and autism community members (278 autistic, 226 non-autistic), including 100 researchers (41 autistic), 122 professionals (35 autistic) and 162 parents/caregivers (53 autistic). They rated the neurodiversity movement, social model, medical model and intervention goals, and answered open-ended questions regarding the meaning of neurodiversity, the neurodiversity movement and disability models. Neurodiversity movement support was associated with endorsing societal reform and making environments more supportive, and lower support for normalization and adaptive skill interventions, though teaching adaptive skills was widely supported overall. Although participants often suggested the social model attributes disability solely to society, this 'strong' view was not universal. 'Strong' social model supporters still endorsed some interventions targeting individuals' characteristics (specifically, teaching adaptive skills, curing depression and epilepsy). Findings confirm that neurodiversity movement supporters denounce normalization, but are open to individualized supports. Findings highlight strong support for autistic leadership (especially among autistic people, including autistic parents) and for societal reform, and suggest that oversimplified rhetoric may cause confusion regarding advocates' views.Lay abstract What is already known about the topic? Some people support the neurodiversity movement and other people criticize it. They often disagree about what the neurodiversity movement means. Confusion about what the neurodiversity movement is makes it hard for people to agree about how best to support autistic or disabled people.What does this article add? We studied autistic and autism community members' views on the neurodiversity movement and autism interventions. Most participants supported the neurodiversity movement. Support for the neurodiversity movement was related to wanting to change society and make places more comfortable for autistic people. Neurodiversity supporters felt autistic children should choose their own intervention goals and that autistic adults should help children choose goals. Neurodiversity supporters did not think autistic people should be taught to act less autistic. Both those agreeing and disagreeing with the neurodiversity movement said that it is important to help autistic people be well. Many participants said that society causes all the difficulties disabled people experience. Yet they were somewhat open to helping people grow by teaching them useful skills and trying to cure depression and epilepsy.Implications for practice, research or policy. To better help autistic people, we should listen to participants in this study. They called for improving society, building more spaces where autistic people feel comfortable and helping autistic people lead change. They warned against teaching autistic people to hide their autism. Critics of the neurodiversity movement should read this article to better understand what neurodiversity movement supporters believe. By taking time to learn from one another, we can work together to better support autistic people. En ligne : https://dx.doi.org/10.1177/13623613241273029 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566 [article] Community views of neurodiversity, models of disability and autism intervention: Mixed methods reveal shared goals and key tensions [Texte imprimé et/ou numérique] / Patrick DWYER, Auteur ; Ava N GURBA, Auteur ; Steven K KAPP, Auteur ; Elizabeth KILGALLON, Auteur ; Lynnette H HERSH, Auteur ; David S CHANG, Auteur ; Susan M RIVERA, Auteur ; Kristen GILLESPIE-LYNCH, Auteur . - p.2297-2314. Langues : Anglais (eng) in Autism > 29-9 (September 2025) . - p.2297-2314 Mots-clés : autism  intervention goals  neurodiversity  normalization  social model Index. décimale : PER Périodiques Résumé : Controversies regarding the neurodiversity movement may be exacerbated by confusion over its meaning. For example, some suggest neurodiversity entails acceptance of the social model, whereas others describe it as more nuanced. We aimed to help resolve conflicting viewpoints by inviting insights from 504 autistic and autism community members (278 autistic, 226 non-autistic), including 100 researchers (41 autistic), 122 professionals (35 autistic) and 162 parents/caregivers (53 autistic). They rated the neurodiversity movement, social model, medical model and intervention goals, and answered open-ended questions regarding the meaning of neurodiversity, the neurodiversity movement and disability models. Neurodiversity movement support was associated with endorsing societal reform and making environments more supportive, and lower support for normalization and adaptive skill interventions, though teaching adaptive skills was widely supported overall. Although participants often suggested the social model attributes disability solely to society, this 'strong' view was not universal. 'Strong' social model supporters still endorsed some interventions targeting individuals' characteristics (specifically, teaching adaptive skills, curing depression and epilepsy). Findings confirm that neurodiversity movement supporters denounce normalization, but are open to individualized supports. Findings highlight strong support for autistic leadership (especially among autistic people, including autistic parents) and for societal reform, and suggest that oversimplified rhetoric may cause confusion regarding advocates' views.Lay abstract What is already known about the topic? Some people support the neurodiversity movement and other people criticize it. They often disagree about what the neurodiversity movement means. Confusion about what the neurodiversity movement is makes it hard for people to agree about how best to support autistic or disabled people.What does this article add? We studied autistic and autism community members' views on the neurodiversity movement and autism interventions. Most participants supported the neurodiversity movement. Support for the neurodiversity movement was related to wanting to change society and make places more comfortable for autistic people. Neurodiversity supporters felt autistic children should choose their own intervention goals and that autistic adults should help children choose goals. Neurodiversity supporters did not think autistic people should be taught to act less autistic. Both those agreeing and disagreeing with the neurodiversity movement said that it is important to help autistic people be well. Many participants said that society causes all the difficulties disabled people experience. Yet they were somewhat open to helping people grow by teaching them useful skills and trying to cure depression and epilepsy.Implications for practice, research or policy. To better help autistic people, we should listen to participants in this study. They called for improving society, building more spaces where autistic people feel comfortable and helping autistic people lead change. They warned against teaching autistic people to hide their autism. Critics of the neurodiversity movement should read this article to better understand what neurodiversity movement supporters believe. By taking time to learn from one another, we can work together to better support autistic people. En ligne : https://dx.doi.org/10.1177/13623613241273029 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566

Do you feel me? Autism, empathic accuracy and the double empathy problem / Rachael TS CHEANG in Autism, 29-9 (September 2025)  

Public ISBD [article]  inAutism > 29-9 (September 2025) . - p.2315-2327 Titre : Do you feel me? Autism, empathic accuracy and the double empathy problem Type de document : Texte imprimé et/ou numérique Auteurs : Rachael TS CHEANG, Auteur ; Maya SKJEVLING, Auteur ; Alexandra IF BLAKEMORE, Auteur ; Veena KUMARI, Auteur ; Ignazio PUZZO, Auteur Article en page(s) : p.2315-2327 Langues : Anglais (eng) Mots-clés : autism spectrum disorders  double empathy problem  empathy  ASD  empathic accuracy  autism Index. décimale : PER Périodiques Résumé : Empathy deficits in autism, particularly cognitive empathy, have been a long-held, but much debated assumption. An alternative perspective challenging this deficit model is the 'double empathy problem', proposing that empathy difficulties are bidirectional between autistic and non-autistic people. Despite this view gaining popularity, there has been limited research examining whether non-autistic people can empathise accurately, cognitively and affectively with autistic people. Addressing this gap, 81 adults from the general population, divided into groups based on how likely they are to share personality traits common in autistic people, were examined using an empathic accuracy task, modified to include autistic and non-autistic narrators and combined with a body mapping tool. Results showed participants had significantly lower empathic accuracy scores when viewing autobiographical accounts of emotional events from autistic narrators, compared to non-autistic narrators, especially for happy and sad emotions. However, participants also experienced significantly higher intensity in the body when viewing autistic narrators compared to non-autistic narrators, especially for anger and fear emotions. These findings support the double empathy problem and have strong implications for therapeutic and interpersonal relationships with autistic people.Lay Abstract The assumption that autistic people lack empathy, particularly imagining how others feel, has been much debated and is now being challenged by an alternative view: the 'double empathy problem'. This suggests that non-autistic people may find it equally difficult to imagine how autistic people feel. Although this perspective is gaining popularity, research testing whether non-autistic people can accurately imagine and feel an autistic person?s emotions is still limited. Our study used video clips of autistic and non-autistic people recounting emotional events to test if participants from the general population could: track the intensity of the narrators' emotions; name and feel the same emotion; match where the narrator felt the emotion and indicate how intensely they felt the emotion using a body map. Our results show that participants found it significantly harder to track autistic narrators' emotions compared to non-autistic narrator?s emotions, especially when viewing clips of narrators feeling happy and sad. We also found that participants felt emotions more intensely in the body when viewing clips of autistic narrators compared to non-autistic narrators, especially when describing anger and fear. These findings support the double empathy problem and have strong implications for therapeutic and interpersonal relationships with autistic people. En ligne : https://dx.doi.org/10.1177/13623613241252320 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566 [article] Do you feel me? Autism, empathic accuracy and the double empathy problem [Texte imprimé et/ou numérique] / Rachael TS CHEANG, Auteur ; Maya SKJEVLING, Auteur ; Alexandra IF BLAKEMORE, Auteur ; Veena KUMARI, Auteur ; Ignazio PUZZO, Auteur . - p.2315-2327. Langues : Anglais (eng) in Autism > 29-9 (September 2025) . - p.2315-2327 Mots-clés : autism spectrum disorders  double empathy problem  empathy  ASD  empathic accuracy  autism Index. décimale : PER Périodiques Résumé : Empathy deficits in autism, particularly cognitive empathy, have been a long-held, but much debated assumption. An alternative perspective challenging this deficit model is the 'double empathy problem', proposing that empathy difficulties are bidirectional between autistic and non-autistic people. Despite this view gaining popularity, there has been limited research examining whether non-autistic people can empathise accurately, cognitively and affectively with autistic people. Addressing this gap, 81 adults from the general population, divided into groups based on how likely they are to share personality traits common in autistic people, were examined using an empathic accuracy task, modified to include autistic and non-autistic narrators and combined with a body mapping tool. Results showed participants had significantly lower empathic accuracy scores when viewing autobiographical accounts of emotional events from autistic narrators, compared to non-autistic narrators, especially for happy and sad emotions. However, participants also experienced significantly higher intensity in the body when viewing autistic narrators compared to non-autistic narrators, especially for anger and fear emotions. These findings support the double empathy problem and have strong implications for therapeutic and interpersonal relationships with autistic people.Lay Abstract The assumption that autistic people lack empathy, particularly imagining how others feel, has been much debated and is now being challenged by an alternative view: the 'double empathy problem'. This suggests that non-autistic people may find it equally difficult to imagine how autistic people feel. Although this perspective is gaining popularity, research testing whether non-autistic people can accurately imagine and feel an autistic person?s emotions is still limited. Our study used video clips of autistic and non-autistic people recounting emotional events to test if participants from the general population could: track the intensity of the narrators' emotions; name and feel the same emotion; match where the narrator felt the emotion and indicate how intensely they felt the emotion using a body map. Our results show that participants found it significantly harder to track autistic narrators' emotions compared to non-autistic narrator?s emotions, especially when viewing clips of narrators feeling happy and sad. We also found that participants felt emotions more intensely in the body when viewing clips of autistic narrators compared to non-autistic narrators, especially when describing anger and fear. These findings support the double empathy problem and have strong implications for therapeutic and interpersonal relationships with autistic people. En ligne : https://dx.doi.org/10.1177/13623613241252320 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566

Examining an integrated path model of psychological and sociocultural predictors of camouflaging in autistic adults / Sici ZHUANG in Autism, 29-9 (September 2025)  

Public ISBD [article]  inAutism > 29-9 (September 2025) . - p.2328-2343 Titre : Examining an integrated path model of psychological and sociocultural predictors of camouflaging in autistic adults Type de document : Texte imprimé et/ou numérique Auteurs : Sici ZHUANG, Auteur ; Mackenzie BOUGOURE, Auteur ; Dawn-Joy LEONG, Auteur ; Lydia DEAN, Auteur ; Susan REDDROP, Auteur ; Kristin NARAGON-GAINEY, Auteur ; Murray MAYBERY, Auteur ; Diana Weiting TAN, Auteur ; Iliana MAGIATI, Auteur Article en page(s) : p.2328-2343 Langues : Anglais (eng) Mots-clés : autism  camouflaging  masking  psychosocial factors  social model of disability Index. décimale : PER Périodiques Résumé : Camouflaging involves various strategies employed by autistic individuals to modulate the visibility of their autistic characteristics in social situations and is thought to be primarily motivated by psychosocial factors. Most studies to date have examined a limited number of psychosocial factors related to camouflaging. This study tested an integrated model encompassing several hypothesised individual psychological (i.e. fear of negative evaluation, self-esteem, autistic identity) and broader sociocultural predictors (i.e. perceived stigma, vulnerability events, cultural tightness-looseness, independent and interdependent self-construal). Participants were 225 autistic adults (18-77?years; 60.9% female), who completed self-report measures online. Path analysis partially supported the model, explaining about 25% of the variance in camouflaging. Several sociocultural factors - perceived stigma, cultural tightness and independent and interdependent self-construal - were indirectly associated with camouflaging through individual psychological factors. Notably, greater vulnerability to negative life events was the only sociocultural factor directly contributing to more camouflaging, without mediation by individual psychological factors. Fear of negative evaluation emerged as a strong predictor, mediating most relationships between broader sociocultural factors and camouflaging. Our findings highlight key psychosocial factors as crucial targets for social change, advocating a shift from stigmatisation to acceptance and inclusion to alleviate the pressure on autistic people to camouflage.Lay abstract Many autistic people use strategies known as 'camouflaging' to change how noticeable their autistic traits are in social situations. Previous research suggests that camouflaging is largely motivated by psychological and social factors. However, most studies so far have only looked at a few psychosocial factors related to camouflaging. In this study, we explored a model that included several individual psychological factors (such as fear of being negatively judged, self-esteem and autistic identity) and broader social and cultural factors (such as perceived stigma, negative life events, cultural emphasis on conformity and desire to fit in or stand out). We surveyed 225 autistic adults aged 18-77?years online. Our findings showed that several sociocultural factors were indirectly linked to camouflaging through individual psychological factors. Fear of being negatively judged emerged as a strong predictor of camouflaging. Specifically, autistic adults who perceived greater stigma, felt greater pressure to conform, had a lesser desire to stand out and a greater desire to fit in tended to experience a greater fear of being negatively judged and reported more camouflaging. In addition, those who experienced more negative life events were more likely to engage in camouflaging. Our study identifies key psychological and social factors as potential targets for social change. Our findings emphasise that our societies need to shift away from stigmatising attitudes towards accepting and including autistic people, which could reduce the pressure on autistic individuals to camouflage in social situations. En ligne : https://dx.doi.org/10.1177/13623613241262110 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566 [article] Examining an integrated path model of psychological and sociocultural predictors of camouflaging in autistic adults [Texte imprimé et/ou numérique] / Sici ZHUANG, Auteur ; Mackenzie BOUGOURE, Auteur ; Dawn-Joy LEONG, Auteur ; Lydia DEAN, Auteur ; Susan REDDROP, Auteur ; Kristin NARAGON-GAINEY, Auteur ; Murray MAYBERY, Auteur ; Diana Weiting TAN, Auteur ; Iliana MAGIATI, Auteur . - p.2328-2343. Langues : Anglais (eng) in Autism > 29-9 (September 2025) . - p.2328-2343 Mots-clés : autism  camouflaging  masking  psychosocial factors  social model of disability Index. décimale : PER Périodiques Résumé : Camouflaging involves various strategies employed by autistic individuals to modulate the visibility of their autistic characteristics in social situations and is thought to be primarily motivated by psychosocial factors. Most studies to date have examined a limited number of psychosocial factors related to camouflaging. This study tested an integrated model encompassing several hypothesised individual psychological (i.e. fear of negative evaluation, self-esteem, autistic identity) and broader sociocultural predictors (i.e. perceived stigma, vulnerability events, cultural tightness-looseness, independent and interdependent self-construal). Participants were 225 autistic adults (18-77?years; 60.9% female), who completed self-report measures online. Path analysis partially supported the model, explaining about 25% of the variance in camouflaging. Several sociocultural factors - perceived stigma, cultural tightness and independent and interdependent self-construal - were indirectly associated with camouflaging through individual psychological factors. Notably, greater vulnerability to negative life events was the only sociocultural factor directly contributing to more camouflaging, without mediation by individual psychological factors. Fear of negative evaluation emerged as a strong predictor, mediating most relationships between broader sociocultural factors and camouflaging. Our findings highlight key psychosocial factors as crucial targets for social change, advocating a shift from stigmatisation to acceptance and inclusion to alleviate the pressure on autistic people to camouflage.Lay abstract Many autistic people use strategies known as 'camouflaging' to change how noticeable their autistic traits are in social situations. Previous research suggests that camouflaging is largely motivated by psychological and social factors. However, most studies so far have only looked at a few psychosocial factors related to camouflaging. In this study, we explored a model that included several individual psychological factors (such as fear of being negatively judged, self-esteem and autistic identity) and broader social and cultural factors (such as perceived stigma, negative life events, cultural emphasis on conformity and desire to fit in or stand out). We surveyed 225 autistic adults aged 18-77?years online. Our findings showed that several sociocultural factors were indirectly linked to camouflaging through individual psychological factors. Fear of being negatively judged emerged as a strong predictor of camouflaging. Specifically, autistic adults who perceived greater stigma, felt greater pressure to conform, had a lesser desire to stand out and a greater desire to fit in tended to experience a greater fear of being negatively judged and reported more camouflaging. In addition, those who experienced more negative life events were more likely to engage in camouflaging. Our study identifies key psychological and social factors as potential targets for social change. Our findings emphasise that our societies need to shift away from stigmatising attitudes towards accepting and including autistic people, which could reduce the pressure on autistic individuals to camouflage in social situations. En ligne : https://dx.doi.org/10.1177/13623613241262110 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566

Self-identification of autism: Why some autistic adults lack a clinical diagnosis and why this matters for inclusion / Katherine ARDELEANU in Autism, 29-9 (September 2025)  

Public ISBD [article]  inAutism > 29-9 (September 2025) . - p.2344-2355 Titre : Self-identification of autism: Why some autistic adults lack a clinical diagnosis and why this matters for inclusion Type de document : Texte imprimé et/ou numérique Auteurs : Katherine ARDELEANU, Auteur ; Hillary STEINBERG, Auteur ; Tamara GARFIELD, Auteur ; Samuelle VOLTAIRE, Auteur ; Lindsay SHEA, Auteur ; Maci BROWN, Auteur ; Kyle CHVASTA, Auteur ; Catherine Do TAN, Auteur Article en page(s) : p.2344-2355 Langues : Anglais (eng) Mots-clés : adults  autism spectrum disorders  diagnosis  policy  qualitative research  queer  transgender Index. décimale : PER Périodiques Résumé : Autism research and services have historically focused on individuals with a formal autism diagnosis. However, activists and self-advocates in the United States recognize that there are financial and clinical barriers impeding access to formal diagnostic evaluations for autism. Research also suggests that groups on the margins of autism, specifically those who are not White, young, or assigned male at birth, receive later diagnoses, if diagnosed at all. In particular, individuals who are autistic and LGTBQ+ are likely to not be afforded opportunities to be assessed and diagnosed. We conducted interviews with 65 queer and transgender autistic adults who either self-identified as autistic or had a formal autism diagnosis about their experiences with and perceptions of autism diagnosis. We found that participants derived a sense of meaning and affirmation from their autistic diagnosis and/or identity, faced significant barriers and deterrents to diagnosis, and experienced invalidation as both a barrier to and product of diagnosis. We argue that self-identified autistic individuals provide valuable context and data for many of the social processes and preferences reported by autistic people. We offer recommendations for research and services, specifically that many should not require formal autism diagnoses of participants.Lay abstract Most autism research and services focus on individuals with formal autism diagnoses. However, autism activists and self-advocates have raised awareness about the challenges that can prevent individuals from seeking or getting an autism diagnosis. We interviewed 65 queer and transgender adults who either self-identified as autistic without a formal diagnosis or who had a formal autism diagnosis. We found that participants made meaning of their autistic diagnosis and/or identity and found affirmation in this, faced significant barriers and deterrents to getting diagnosed, and experienced invalidation as both a barrier to and product of diagnosis. Due to the challenges that individuals face in getting a diagnosis, we recommend that researchers and advocates consider including self-identified autistic individuals in research and services. En ligne : https://dx.doi.org/10.1177/13623613241297222 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566 [article] Self-identification of autism: Why some autistic adults lack a clinical diagnosis and why this matters for inclusion [Texte imprimé et/ou numérique] / Katherine ARDELEANU, Auteur ; Hillary STEINBERG, Auteur ; Tamara GARFIELD, Auteur ; Samuelle VOLTAIRE, Auteur ; Lindsay SHEA, Auteur ; Maci BROWN, Auteur ; Kyle CHVASTA, Auteur ; Catherine Do TAN, Auteur . - p.2344-2355. Langues : Anglais (eng) in Autism > 29-9 (September 2025) . - p.2344-2355 Mots-clés : adults  autism spectrum disorders  diagnosis  policy  qualitative research  queer  transgender Index. décimale : PER Périodiques Résumé : Autism research and services have historically focused on individuals with a formal autism diagnosis. However, activists and self-advocates in the United States recognize that there are financial and clinical barriers impeding access to formal diagnostic evaluations for autism. Research also suggests that groups on the margins of autism, specifically those who are not White, young, or assigned male at birth, receive later diagnoses, if diagnosed at all. In particular, individuals who are autistic and LGTBQ+ are likely to not be afforded opportunities to be assessed and diagnosed. We conducted interviews with 65 queer and transgender autistic adults who either self-identified as autistic or had a formal autism diagnosis about their experiences with and perceptions of autism diagnosis. We found that participants derived a sense of meaning and affirmation from their autistic diagnosis and/or identity, faced significant barriers and deterrents to diagnosis, and experienced invalidation as both a barrier to and product of diagnosis. We argue that self-identified autistic individuals provide valuable context and data for many of the social processes and preferences reported by autistic people. We offer recommendations for research and services, specifically that many should not require formal autism diagnoses of participants.Lay abstract Most autism research and services focus on individuals with formal autism diagnoses. However, autism activists and self-advocates have raised awareness about the challenges that can prevent individuals from seeking or getting an autism diagnosis. We interviewed 65 queer and transgender adults who either self-identified as autistic without a formal diagnosis or who had a formal autism diagnosis. We found that participants made meaning of their autistic diagnosis and/or identity and found affirmation in this, faced significant barriers and deterrents to getting diagnosed, and experienced invalidation as both a barrier to and product of diagnosis. Due to the challenges that individuals face in getting a diagnosis, we recommend that researchers and advocates consider including self-identified autistic individuals in research and services. En ligne : https://dx.doi.org/10.1177/13623613241297222 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566

The design of the "autistics in (educational) space: building our own futures" doctoral project / Ryan B COLLIS in Autism, 29-9 (September 2025)  

Public ISBD [article]  inAutism > 29-9 (September 2025) . - p.2356-2367 Titre : The design of the "autistics in (educational) space: building our own futures" doctoral project Type de document : Texte imprimé et/ou numérique Auteurs : Ryan B COLLIS, Auteur Article en page(s) : p.2356-2367 Langues : Anglais (eng) Mots-clés : autistic  education  high school  science fiction Index. décimale : PER Périodiques Résumé : As an autistic researcher and doctoral candidate, I have designed my dissertation research in a way that values the lived experience of my four autistic participants. Using their responses to a series of material objects and a science fiction novel by, and about, an autistic person, I hope to find new and innovative ways to reconceptualize inclusive education in high school. This article explains my theoretical framework and methodology, as well as some preliminary results and discussion.Lay Abstract I am autistic and a PhD student and I look for ways to learn from other autistic people. I gave a group of 4 autistic participants 14 items and asked them to do something with each of them, then send me pictures of what they did. We also all read a science fiction novel written by an autistic author and talked about what we thought was interesting or that felt familiar to us. By using what they shared with me, I want to find ways to make high school more comfortable for autistic students. In this article, I describe how I came up with this plan, what I did, and some of the first things I discovered. En ligne : https://dx.doi.org/10.1177/13623613251328495 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566 [article] The design of the "autistics in (educational) space: building our own futures" doctoral project [Texte imprimé et/ou numérique] / Ryan B COLLIS, Auteur . - p.2356-2367. Langues : Anglais (eng) in Autism > 29-9 (September 2025) . - p.2356-2367 Mots-clés : autistic  education  high school  science fiction Index. décimale : PER Périodiques Résumé : As an autistic researcher and doctoral candidate, I have designed my dissertation research in a way that values the lived experience of my four autistic participants. Using their responses to a series of material objects and a science fiction novel by, and about, an autistic person, I hope to find new and innovative ways to reconceptualize inclusive education in high school. This article explains my theoretical framework and methodology, as well as some preliminary results and discussion.Lay Abstract I am autistic and a PhD student and I look for ways to learn from other autistic people. I gave a group of 4 autistic participants 14 items and asked them to do something with each of them, then send me pictures of what they did. We also all read a science fiction novel written by an autistic author and talked about what we thought was interesting or that felt familiar to us. By using what they shared with me, I want to find ways to make high school more comfortable for autistic students. In this article, I describe how I came up with this plan, what I did, and some of the first things I discovered. En ligne : https://dx.doi.org/10.1177/13623613251328495 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566