
- <Centre d'Information et de documentation du CRA Rhône-Alpes
- CRA
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Centre d'information et de documentation
Horaires
du CRA Rhône-Alpes
Centre Hospitalier le Vinatier
bât 211
95, Bd Pinel
69678 Bron CedexLundi au Vendredi
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9h00-12h00 13h30-16h00Tél: +33(0)4 37 91 54 65
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Fax: +33(0)4 37 91 54 37
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Adresse
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[n° ou bulletin]
[n° ou bulletin] 28-6 - June 2024 [Texte imprimé et/ou numérique] . - 2024. Langues : Anglais (eng)
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Exemplaires (1)
Code-barres | Cote | Support | Localisation | Section | Disponibilité |
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PER0002164 | PER AUT | Périodique | Centre d'Information et de Documentation du CRA Rhône-Alpes | PER - Périodiques | Exclu du prêt |
Dépouillements


Emerging adulthood in autism: Striving for independence or interdependence? / Carly MOSER in Autism, 28-6 (June 2024)
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[article]
Titre : Emerging adulthood in autism: Striving for independence or interdependence? Type de document : Texte imprimé et/ou numérique Auteurs : Carly MOSER, Auteur ; Leann SMITH DAWALT, Auteur ; Meghan M. BURKE, Auteur ; Julie Lounds TAYLOR, Auteur Article en page(s) : p.1325-1327 Langues : Anglais (eng) Index. décimale : PER Périodiques En ligne : https://dx.doi.org/10.1177/13623613241245647 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529
in Autism > 28-6 (June 2024) . - p.1325-1327[article] Emerging adulthood in autism: Striving for independence or interdependence? [Texte imprimé et/ou numérique] / Carly MOSER, Auteur ; Leann SMITH DAWALT, Auteur ; Meghan M. BURKE, Auteur ; Julie Lounds TAYLOR, Auteur . - p.1325-1327.
Langues : Anglais (eng)
in Autism > 28-6 (June 2024) . - p.1325-1327
Index. décimale : PER Périodiques En ligne : https://dx.doi.org/10.1177/13623613241245647 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 A meta-ethnography of autistic people?s experiences of social camouflaging and its relationship with mental health / Sarah L. FIELD in Autism, 28-6 (June 2024)
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Titre : A meta-ethnography of autistic people?s experiences of social camouflaging and its relationship with mental health Type de document : Texte imprimé et/ou numérique Auteurs : Sarah L. FIELD, Auteur ; Marc O. WILLIAMS, Auteur ; Catherine R.G. JONES, Auteur ; John R.E. FOX, Auteur Article en page(s) : p.1328-1343 Langues : Anglais (eng) Mots-clés : autism mental health meta-ethnography social camouflaging systematic review Index. décimale : PER Périodiques Résumé : Some autistic people use strategies to hide autistic behaviour and appear more neurotypical. Previous research has linked this 'social camouflaging' with mental health difficulties. This review synthesised qualitative research to explore the relationship between camouflaging and mental health. Thirteen studies were systematically identified, appraised and synthesised using meta-ethnography. Four third-order concepts were developed, describing camouflaging as an attempt to cope with stressful social contexts which impact mental health. Many autistic people experienced unintended negative consequences of their camouflaging that increased stress. Potential mechanisms for the relationship between camouflaging and mental health related to the qualities of the strategies that were used. Camouflaging strategies that were superficially 'successful' involved high levels of self-monitoring, were highly cognitively demanding or highly habitual and appeared more linked to poor mental health. This should be investigated in future research and has potential implications for how clinicians support autistic people with mental health difficulties. Lay Abstract Some autistic people describe trying to hide autistic behaviour and seem more neurotypical. Researchers called this 'social camouflaging' and have linked it with mental health difficulties. We used a step-by-step approach to identify research where autistic people talk about social camouflaging to explore the relationship between camouflaging and poor mental health. Thirteen studies were combined. The results describe how society negatively impacts autistic people?s mental health, and camouflaging is a way to try and cope with this. Many autistic people find their camouflaging strategies have accidental negative consequences which also affect their mental health. Strategies which seemed 'successful' involved a lot of self-monitoring, were very mentally demanding or were very habitual and seemed to have more of an effect on mental health. This might be important for clinicians who support autistic people with mental health difficulties. En ligne : https://dx.doi.org/10.1177/13623613231223036 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529
in Autism > 28-6 (June 2024) . - p.1328-1343[article] A meta-ethnography of autistic people?s experiences of social camouflaging and its relationship with mental health [Texte imprimé et/ou numérique] / Sarah L. FIELD, Auteur ; Marc O. WILLIAMS, Auteur ; Catherine R.G. JONES, Auteur ; John R.E. FOX, Auteur . - p.1328-1343.
Langues : Anglais (eng)
in Autism > 28-6 (June 2024) . - p.1328-1343
Mots-clés : autism mental health meta-ethnography social camouflaging systematic review Index. décimale : PER Périodiques Résumé : Some autistic people use strategies to hide autistic behaviour and appear more neurotypical. Previous research has linked this 'social camouflaging' with mental health difficulties. This review synthesised qualitative research to explore the relationship between camouflaging and mental health. Thirteen studies were systematically identified, appraised and synthesised using meta-ethnography. Four third-order concepts were developed, describing camouflaging as an attempt to cope with stressful social contexts which impact mental health. Many autistic people experienced unintended negative consequences of their camouflaging that increased stress. Potential mechanisms for the relationship between camouflaging and mental health related to the qualities of the strategies that were used. Camouflaging strategies that were superficially 'successful' involved high levels of self-monitoring, were highly cognitively demanding or highly habitual and appeared more linked to poor mental health. This should be investigated in future research and has potential implications for how clinicians support autistic people with mental health difficulties. Lay Abstract Some autistic people describe trying to hide autistic behaviour and seem more neurotypical. Researchers called this 'social camouflaging' and have linked it with mental health difficulties. We used a step-by-step approach to identify research where autistic people talk about social camouflaging to explore the relationship between camouflaging and poor mental health. Thirteen studies were combined. The results describe how society negatively impacts autistic people?s mental health, and camouflaging is a way to try and cope with this. Many autistic people find their camouflaging strategies have accidental negative consequences which also affect their mental health. Strategies which seemed 'successful' involved a lot of self-monitoring, were very mentally demanding or were very habitual and seemed to have more of an effect on mental health. This might be important for clinicians who support autistic people with mental health difficulties. En ligne : https://dx.doi.org/10.1177/13623613231223036 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 'It?s a symbolic violence': Autistic people?s experiences of discrimination at universities in Australia / Diana Weiting TAN in Autism, 28-6 (June 2024)
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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
in Autism > 28-6 (June 2024) . - p.1344-1356[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 "I do my best to do right by her": Autistic motherhood and the experience of raising a non-autistic adolescent daughter / Natalie LIBSTER in Autism, 28-6 (June 2024)
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Titre : "I do my best to do right by her": Autistic motherhood and the experience of raising a non-autistic adolescent daughter Type de document : Texte imprimé et/ou numérique Auteurs : Natalie LIBSTER, Auteur ; Robin HARWOOD, Auteur ; Karen MEACHAM, Auteur ; Connie KASARI, Auteur Article en page(s) : p.1357-1368 Langues : Anglais (eng) Mots-clés : adolescent daughter autistic mother interpretative phenomenological analysis parent-child relationship Index. décimale : PER Périodiques Résumé : Little is known about the parenting experiences of autistic mothers, yet there is reason to believe that autistic mothers of non-autistic daughters have a unique set of experiences, especially during their daughters' adolescence. Seven autistic mothers of adolescent (n = 5) and adult (n = 2) non-autistic daughters were interviewed about their experiences of raising their daughters during adolescence. Data were analyzed using an Interpretative Phenomenological Analysis (IPA) approach and four superordinate themes were identified: (1) Closeness in relationships (expressed affection, safety and support, understanding mothers' autism), (2) Parenting strengths (problem-solving skills, positive strategies for managing conflict), (3) Identifying own social challenges (understanding social dynamics, friendships and social groups), and (4) Building daughters' social skills (concern about daughters' social development, creating opportunities for positive social interactions). This research highlights the strengths of autistic mothers and the loving relationships they have with their daughters. Mothers in this study also revealed specific challenges, such as interacting with other parents who often ignored or excluded them. This study, therefore, emphasizes the need for greater societal awareness, understanding, acceptance, and inclusion of the autistic community. Lay Abstract Little is known about the parenting experiences of autistic mothers, especially those who have daughters who are not on the autism spectrum. In this study, we interviewed seven autistic mothers who have raised or are currently raising non-autistic teenage daughters. Mothers were asked to describe what parenting was/is like during their daughters' teenage years. We analyzed the transcripts of the interviews and found several common themes. Mothers described their relationships with their daughters to be loving, safe, and empathetic. Mothers described several strengths when it came to parenting, such as helping their daughters solve problems and using positive strategies to handle conflict with their daughters. Mothers also described challenges they faced when interacting with other non-autistic people and when trying to form relationships with them. Mothers tried to build their daughters' social skills so that they would not experience the same challenges. This study shows that autistic mothers have close, loving relationships with their non-autistic teenage daughters but have trouble forming relationships with other non-autistic people. It is, therefore, important that non-autistic parents are more understanding and welcoming of autistic mothers. En ligne : https://dx.doi.org/10.1177/13623613241241577 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529
in Autism > 28-6 (June 2024) . - p.1357-1368[article] "I do my best to do right by her": Autistic motherhood and the experience of raising a non-autistic adolescent daughter [Texte imprimé et/ou numérique] / Natalie LIBSTER, Auteur ; Robin HARWOOD, Auteur ; Karen MEACHAM, Auteur ; Connie KASARI, Auteur . - p.1357-1368.
Langues : Anglais (eng)
in Autism > 28-6 (June 2024) . - p.1357-1368
Mots-clés : adolescent daughter autistic mother interpretative phenomenological analysis parent-child relationship Index. décimale : PER Périodiques Résumé : Little is known about the parenting experiences of autistic mothers, yet there is reason to believe that autistic mothers of non-autistic daughters have a unique set of experiences, especially during their daughters' adolescence. Seven autistic mothers of adolescent (n = 5) and adult (n = 2) non-autistic daughters were interviewed about their experiences of raising their daughters during adolescence. Data were analyzed using an Interpretative Phenomenological Analysis (IPA) approach and four superordinate themes were identified: (1) Closeness in relationships (expressed affection, safety and support, understanding mothers' autism), (2) Parenting strengths (problem-solving skills, positive strategies for managing conflict), (3) Identifying own social challenges (understanding social dynamics, friendships and social groups), and (4) Building daughters' social skills (concern about daughters' social development, creating opportunities for positive social interactions). This research highlights the strengths of autistic mothers and the loving relationships they have with their daughters. Mothers in this study also revealed specific challenges, such as interacting with other parents who often ignored or excluded them. This study, therefore, emphasizes the need for greater societal awareness, understanding, acceptance, and inclusion of the autistic community. Lay Abstract Little is known about the parenting experiences of autistic mothers, especially those who have daughters who are not on the autism spectrum. In this study, we interviewed seven autistic mothers who have raised or are currently raising non-autistic teenage daughters. Mothers were asked to describe what parenting was/is like during their daughters' teenage years. We analyzed the transcripts of the interviews and found several common themes. Mothers described their relationships with their daughters to be loving, safe, and empathetic. Mothers described several strengths when it came to parenting, such as helping their daughters solve problems and using positive strategies to handle conflict with their daughters. Mothers also described challenges they faced when interacting with other non-autistic people and when trying to form relationships with them. Mothers tried to build their daughters' social skills so that they would not experience the same challenges. This study shows that autistic mothers have close, loving relationships with their non-autistic teenage daughters but have trouble forming relationships with other non-autistic people. It is, therefore, important that non-autistic parents are more understanding and welcoming of autistic mothers. En ligne : https://dx.doi.org/10.1177/13623613241241577 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 "I have to charge my social battery": Perspectives from autistic young adults on Quality of Life / Elisabeth ØVERLAND in Autism, 28-6 (June 2024)
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Titre : "I have to charge my social battery": Perspectives from autistic young adults on Quality of Life Type de document : Texte imprimé et/ou numérique Auteurs : Elisabeth ØVERLAND, Auteur ; Åshild Lappegard HAUGE, Auteur ; Stian ORM, Auteur ; Merete Glenne ØIE, Auteur ; Erik Winther SKOGLI, Auteur ; Elizabeth PELLICANO, Auteur ; Per Normann ANDERSEN, Auteur Article en page(s) : p.1369-1381 Langues : Anglais (eng) Mots-clés : autism emerging adulthood quality of life reflexive thematic analysis Index. décimale : PER Périodiques Résumé : Several studies report on lower quality of life for autistic people when compared to non-autistic people. However, there are ongoing discussions about the conceptualization of quality of life for the autistic population. This qualitative study investigated self-perceived quality of life in the context of autistic young adults' everyday lives. Participants (age range 21-29 years) were recruited from a 10-year follow-up study, Lillehammer Neurodevelopmental Follow-up Study, all diagnosed in childhood and adolescence. Fourteen individual in-depth interviews were conducted. When asked about what was important for having a good quality of life, our autistic participants described relationships to people and pets as important, as well as having meaningful activities. Specific interests had guided many to their choice of both academic and work career. Many also described obstacles in their environment that had influenced their quality of life negatively, such as being misunderstood by teachers and other professionals, being bullied, and sensory and emotional overload. Our findings indicate that those in supportive roles should provide help with establishing connections to activities and people/animals, as this seems to be essential for creating a good quality of life. Taking advantage of passions and interests can create opportunities for autistic people. Findings suggest that future research should address the communication barriers between autistic people and professionals that can lead to misunderstandings. Lay abstract In this study we have asked a group of autistic young adults to describe what is important for their quality of life. The 14 participants (aged 21-29 years) were recruited from a 10-year follow-up study of autistic people. During interviews, our participants described the importance of having relationships with family, friends and pets. Having meaningful activities and being able to immerse themselves in particular interests was also reported to be important for a good quality of life. Interests had also guided their choice of what to study and what to do for work. They also spoke of how communication problems with professionals, bullying and sensory and emotional overload could have a negative impact on quality of life. Future interventions should focus on how professionals can help autistic people to connect to people/animals and meaningful activities, as the participants described this as important for having a good quality of life. These findings may be helpful in enhancing how passions and interests can be seen as opportunities for both academic and work careers for autistic people. Future research and interventions should also look at the communication barriers between autistic people and professionals, and how two-way understanding can be improved. En ligne : https://dx.doi.org/10.1177/13623613241245578 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529
in Autism > 28-6 (June 2024) . - p.1369-1381[article] "I have to charge my social battery": Perspectives from autistic young adults on Quality of Life [Texte imprimé et/ou numérique] / Elisabeth ØVERLAND, Auteur ; Åshild Lappegard HAUGE, Auteur ; Stian ORM, Auteur ; Merete Glenne ØIE, Auteur ; Erik Winther SKOGLI, Auteur ; Elizabeth PELLICANO, Auteur ; Per Normann ANDERSEN, Auteur . - p.1369-1381.
Langues : Anglais (eng)
in Autism > 28-6 (June 2024) . - p.1369-1381
Mots-clés : autism emerging adulthood quality of life reflexive thematic analysis Index. décimale : PER Périodiques Résumé : Several studies report on lower quality of life for autistic people when compared to non-autistic people. However, there are ongoing discussions about the conceptualization of quality of life for the autistic population. This qualitative study investigated self-perceived quality of life in the context of autistic young adults' everyday lives. Participants (age range 21-29 years) were recruited from a 10-year follow-up study, Lillehammer Neurodevelopmental Follow-up Study, all diagnosed in childhood and adolescence. Fourteen individual in-depth interviews were conducted. When asked about what was important for having a good quality of life, our autistic participants described relationships to people and pets as important, as well as having meaningful activities. Specific interests had guided many to their choice of both academic and work career. Many also described obstacles in their environment that had influenced their quality of life negatively, such as being misunderstood by teachers and other professionals, being bullied, and sensory and emotional overload. Our findings indicate that those in supportive roles should provide help with establishing connections to activities and people/animals, as this seems to be essential for creating a good quality of life. Taking advantage of passions and interests can create opportunities for autistic people. Findings suggest that future research should address the communication barriers between autistic people and professionals that can lead to misunderstandings. Lay abstract In this study we have asked a group of autistic young adults to describe what is important for their quality of life. The 14 participants (aged 21-29 years) were recruited from a 10-year follow-up study of autistic people. During interviews, our participants described the importance of having relationships with family, friends and pets. Having meaningful activities and being able to immerse themselves in particular interests was also reported to be important for a good quality of life. Interests had also guided their choice of what to study and what to do for work. They also spoke of how communication problems with professionals, bullying and sensory and emotional overload could have a negative impact on quality of life. Future interventions should focus on how professionals can help autistic people to connect to people/animals and meaningful activities, as the participants described this as important for having a good quality of life. These findings may be helpful in enhancing how passions and interests can be seen as opportunities for both academic and work careers for autistic people. Future research and interventions should also look at the communication barriers between autistic people and professionals, and how two-way understanding can be improved. En ligne : https://dx.doi.org/10.1177/13623613241245578 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 "I?m dealing with a health care system that doesn?t get it": Barriers and facilitators to inclusive healthcare for autistic adults / Kiley J. MCLEAN in Autism, 28-6 (June 2024)
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[article]
Titre : "I?m dealing with a health care system that doesn?t get it": Barriers and facilitators to inclusive healthcare for autistic adults Type de document : Texte imprimé et/ou numérique Auteurs : Kiley J. MCLEAN, Auteur ; Meghan HAAS, Auteur ; Jamie KOENIG, Auteur ; Megan HORVATH, Auteur ; Mariah VIGIL, Auteur ; Nicole E. WERNER, Auteur ; Lauren BISHOP, Auteur Article en page(s) : p.1382-1393 Langues : Anglais (eng) Mots-clés : adults autism spectrum disorders health services qualitative research Index. décimale : PER Périodiques Résumé : Emerging research points to high rates of major psychiatric disorders and chronic medical conditions among autistic adults. However, the unique healthcare needs of autistic adults are often overlooked, perhaps due to limitations in population-level surveillance and widespread public misconceptions about autism in adulthood. Understanding the mechanisms underlying this prevalence of poor health outcomes in autistic adults requires an exploration into the lived experiences of autistic adults across their lifespans. This study uses a qualitative approach to investigate the healthcare experiences of autistic adults. We conducted semi-structured interviews with 23 autistic adults in the United States, ranging in age from 18 to 56?years, seven of whom identified as nonbinary or gender non-conforming. We asked autistic adults about how they manage their health and interact with healthcare systems. Through thematic analysis of the data, barriers to receipt of quality care for autistic adults were identified. Results were then conceptualized through the Systems Engineering Initiative for Patient Safety model of work system and patient safety. Through this model, this study describes the interactions between autistic adults and their healthcare systems, pointing to specific areas for improvement and intervention. Overall, findings advocate for a system-level approach to improving health outcomes of autistic adults. Lay abstract Research has suggested that autistic adults may have a bigger chance of having mental health and physical health conditions such as depression, anxiety, sleep disorders, diabetes, obesity, and heart problems than adults without autism. Unfortunately, the unique healthcare needs of autistic adults are often overlooked, so it is not clear why autistic adults have worse health or what can be done to improve it. This study wants to find out the challenges autistic adults experience in taking care of their health and in going to different doctors. Researchers interviewed autistic adults across the country about their healthcare experiences. The interviewed autistic adults told the researchers about the barriers (things that did not help) and facilitators (things that did help) that impacted whether they received the care they needed. The researchers then organized what they learned from the autistic adults into a model called the Systems Engineering Initiative for Patient Safety model of work system and patient safety. This model explains how different parts of a healthcare system (person, tasks, technology and tools, environment, and organization) interact with one another and impact the healthcare experiences and outcomes of the patients in their care, like autistic adults. Overall, this study advocates for a systems-level approach to improving the healthcare experiences of autistic adults and their health outcomes. En ligne : https://dx.doi.org/10.1177/13623613241236380 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529
in Autism > 28-6 (June 2024) . - p.1382-1393[article] "I?m dealing with a health care system that doesn?t get it": Barriers and facilitators to inclusive healthcare for autistic adults [Texte imprimé et/ou numérique] / Kiley J. MCLEAN, Auteur ; Meghan HAAS, Auteur ; Jamie KOENIG, Auteur ; Megan HORVATH, Auteur ; Mariah VIGIL, Auteur ; Nicole E. WERNER, Auteur ; Lauren BISHOP, Auteur . - p.1382-1393.
Langues : Anglais (eng)
in Autism > 28-6 (June 2024) . - p.1382-1393
Mots-clés : adults autism spectrum disorders health services qualitative research Index. décimale : PER Périodiques Résumé : Emerging research points to high rates of major psychiatric disorders and chronic medical conditions among autistic adults. However, the unique healthcare needs of autistic adults are often overlooked, perhaps due to limitations in population-level surveillance and widespread public misconceptions about autism in adulthood. Understanding the mechanisms underlying this prevalence of poor health outcomes in autistic adults requires an exploration into the lived experiences of autistic adults across their lifespans. This study uses a qualitative approach to investigate the healthcare experiences of autistic adults. We conducted semi-structured interviews with 23 autistic adults in the United States, ranging in age from 18 to 56?years, seven of whom identified as nonbinary or gender non-conforming. We asked autistic adults about how they manage their health and interact with healthcare systems. Through thematic analysis of the data, barriers to receipt of quality care for autistic adults were identified. Results were then conceptualized through the Systems Engineering Initiative for Patient Safety model of work system and patient safety. Through this model, this study describes the interactions between autistic adults and their healthcare systems, pointing to specific areas for improvement and intervention. Overall, findings advocate for a system-level approach to improving health outcomes of autistic adults. Lay abstract Research has suggested that autistic adults may have a bigger chance of having mental health and physical health conditions such as depression, anxiety, sleep disorders, diabetes, obesity, and heart problems than adults without autism. Unfortunately, the unique healthcare needs of autistic adults are often overlooked, so it is not clear why autistic adults have worse health or what can be done to improve it. This study wants to find out the challenges autistic adults experience in taking care of their health and in going to different doctors. Researchers interviewed autistic adults across the country about their healthcare experiences. The interviewed autistic adults told the researchers about the barriers (things that did not help) and facilitators (things that did help) that impacted whether they received the care they needed. The researchers then organized what they learned from the autistic adults into a model called the Systems Engineering Initiative for Patient Safety model of work system and patient safety. This model explains how different parts of a healthcare system (person, tasks, technology and tools, environment, and organization) interact with one another and impact the healthcare experiences and outcomes of the patients in their care, like autistic adults. Overall, this study advocates for a systems-level approach to improving the healthcare experiences of autistic adults and their health outcomes. En ligne : https://dx.doi.org/10.1177/13623613241236380 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 'I?m not just being difficult .?.?. I?m finding it difficult': A qualitative approach to understanding experiences of autistic parents when interacting with statutory services regarding their autistic child / Sarah RADEV in Autism, 28-6 (June 2024)
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Titre : 'I?m not just being difficult .?.?. I?m finding it difficult': A qualitative approach to understanding experiences of autistic parents when interacting with statutory services regarding their autistic child Type de document : Texte imprimé et/ou numérique Auteurs : Sarah RADEV, Auteur ; Megan FREETH, Auteur ; Andrew R. THOMPSON, Auteur Article en page(s) : p.1394-1404 Langues : Anglais (eng) Mots-clés : adults advocacy autism spectrum disorders education services health services parents qualitative research schoolage children Index. décimale : PER Périodiques Résumé : The experiences of autistic parents when interacting with statutory services for their autistic children is not well understood. This study investigates the experiences of autistic parents' interactions with statutory services, including education and healthcare, in relation to their autistic children. Interpretative Phenomenological Analysis was used to investigate their experiences. Ten autistic mothers of autistic children in mainstream education completed semi-structured interviews, which were co-developed with autistic parents. Two superordinate themes were developed: (1) The wider system is the problem and (2) Feeling judged and stigmatised. While Theme 1 demonstrates some similarities in the experiences of autistic parents to that of non-autistic parents in previous studies, theme 2 is unique to autistic parents who may feel that they are being treated differently. These themes indicate the importance of training encouraging a strength-based rather than deficit-based understanding of autism. Participants highlighted the wider system is the problem rather than individual professionals, and that it places some families at a disadvantage. Lay abstract Becoming a parent is an important part of adult life for many people, including autistic people. Many parents of autistic children can find getting the right support for their children difficult. Knowledge is currently poor about how this is experienced by parents who are also autistic themselves. The main researcher is also an autistic parent to an autistic child and other experts by experience were consulted in the development of the study. Ten autistic mothers with autistic children in mainstream education were interviewed about their experiences of seeking support for their autistic children from services such as healthcare and education. Participants talked about finding the overall system being the main problem, rather than the individuals working in it, and about needing to fight to get the right support for their children. These are points that non-autistic parents have also raised before. Participants also talked about feeling judged and stigmatised for being autistic, and about struggling to manage sensory and communication difficulties, which is something that has not been talked about by non-autistic parents. Improving services to offer better support to autistic families is important and can be achieved through better training. This training should be developed and run by autistic adults and focus on positive aspects of autism, rather than negative. En ligne : https://dx.doi.org/10.1177/13623613231212794 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529
in Autism > 28-6 (June 2024) . - p.1394-1404[article] 'I?m not just being difficult .?.?. I?m finding it difficult': A qualitative approach to understanding experiences of autistic parents when interacting with statutory services regarding their autistic child [Texte imprimé et/ou numérique] / Sarah RADEV, Auteur ; Megan FREETH, Auteur ; Andrew R. THOMPSON, Auteur . - p.1394-1404.
Langues : Anglais (eng)
in Autism > 28-6 (June 2024) . - p.1394-1404
Mots-clés : adults advocacy autism spectrum disorders education services health services parents qualitative research schoolage children Index. décimale : PER Périodiques Résumé : The experiences of autistic parents when interacting with statutory services for their autistic children is not well understood. This study investigates the experiences of autistic parents' interactions with statutory services, including education and healthcare, in relation to their autistic children. Interpretative Phenomenological Analysis was used to investigate their experiences. Ten autistic mothers of autistic children in mainstream education completed semi-structured interviews, which were co-developed with autistic parents. Two superordinate themes were developed: (1) The wider system is the problem and (2) Feeling judged and stigmatised. While Theme 1 demonstrates some similarities in the experiences of autistic parents to that of non-autistic parents in previous studies, theme 2 is unique to autistic parents who may feel that they are being treated differently. These themes indicate the importance of training encouraging a strength-based rather than deficit-based understanding of autism. Participants highlighted the wider system is the problem rather than individual professionals, and that it places some families at a disadvantage. Lay abstract Becoming a parent is an important part of adult life for many people, including autistic people. Many parents of autistic children can find getting the right support for their children difficult. Knowledge is currently poor about how this is experienced by parents who are also autistic themselves. The main researcher is also an autistic parent to an autistic child and other experts by experience were consulted in the development of the study. Ten autistic mothers with autistic children in mainstream education were interviewed about their experiences of seeking support for their autistic children from services such as healthcare and education. Participants talked about finding the overall system being the main problem, rather than the individuals working in it, and about needing to fight to get the right support for their children. These are points that non-autistic parents have also raised before. Participants also talked about feeling judged and stigmatised for being autistic, and about struggling to manage sensory and communication difficulties, which is something that has not been talked about by non-autistic parents. Improving services to offer better support to autistic families is important and can be achieved through better training. This training should be developed and run by autistic adults and focus on positive aspects of autism, rather than negative. En ligne : https://dx.doi.org/10.1177/13623613231212794 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 "A perfect storm": Autistic experiences of menopause and midlife / Miranda J. BRADY in Autism, 28-6 (June 2024)
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Titre : "A perfect storm": Autistic experiences of menopause and midlife Type de document : Texte imprimé et/ou numérique Auteurs : Miranda J. BRADY, Auteur ; Christine A. JENKINS, Auteur ; Julie M. GAMBLE-TURNER, Auteur ; Rachel L. MOSELEY, Auteur ; Margaret JANSE VAN RENSBURG, Auteur ; Rose J. MATTHEWS, Auteur Article en page(s) : p.1405-1418 Langues : Anglais (eng) Mots-clés : autism and ageing autism in women autistic research autistic support community participation in research health services menopause mental health neurodivergence Index. décimale : PER Périodiques Résumé : Previous research indicates that menopause can be an extremely difficult transition for some autistic people. This study asks how autistic people experience menopause and how they can better access services, support and information; autistic Community Research Associates played an important role in each stage of the research. Online focus groups and interviews were conducted with 24 autistic participants who lived in Canada (n = 13) or the United Kingdom (n = 11) and had experience with the menopausal transition. Transcripts were coded and analysed by four team members using reflexive thematic analysis. Four themes and eight subthemes were identified: (1) Complexity, multiplicity and intensity of symptoms (0 subthemes); (2) Life experience and adversity converging at midlife (three subthemes); (3) The importance of knowledge and connection (two subthemes); and (4) Barriers to support and care (three subthemes). Limitations include a potential sample bias towards difficult experiences of menopause. The majority of our sample had a late diagnosis or discovery of autism, and their experiences might not generalize to wider autistic populations. This research may help autistic people prepare for menopause and recognize symptoms earlier. Hearing about the experiences of others may let autistic people who struggle with menopause know they are not alone. Lay abstract Previous studies report that menopause can be a very difficult transition for some autistic people. This study focuses on how autistic people experience menopause and what support and information might help them. Autistic Community Research Associates played an important role in the research and co-authored this article. We held four focus groups and eight interviews online with 24 autistic participants who lived in either Canada (n = 13) or the United Kingdom (n = 11). We analysed participant conversations using a method called reflexive thematic analysis. Participants described many intense challenges during menopause. Four themes and eight subthemes were identified across participant groups: (1) Complexity, multiplicity and intensity of symptoms (0 subthemes); (2) Life experience and adversity converging at midlife (three subthemes); (3) The importance of knowledge and connection (two subthemes); and (4) Barriers to support and care (three subthemes). The experiences of our participants may not be the same as other autistic people, and the study could have been more inclusive of diverse autistic groups. However, hearing about the experiences of others may provide reassurance to autistic people who struggle with menopause and let them know they are not alone. En ligne : https://dx.doi.org/10.1177/13623613241244548 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529
in Autism > 28-6 (June 2024) . - p.1405-1418[article] "A perfect storm": Autistic experiences of menopause and midlife [Texte imprimé et/ou numérique] / Miranda J. BRADY, Auteur ; Christine A. JENKINS, Auteur ; Julie M. GAMBLE-TURNER, Auteur ; Rachel L. MOSELEY, Auteur ; Margaret JANSE VAN RENSBURG, Auteur ; Rose J. MATTHEWS, Auteur . - p.1405-1418.
Langues : Anglais (eng)
in Autism > 28-6 (June 2024) . - p.1405-1418
Mots-clés : autism and ageing autism in women autistic research autistic support community participation in research health services menopause mental health neurodivergence Index. décimale : PER Périodiques Résumé : Previous research indicates that menopause can be an extremely difficult transition for some autistic people. This study asks how autistic people experience menopause and how they can better access services, support and information; autistic Community Research Associates played an important role in each stage of the research. Online focus groups and interviews were conducted with 24 autistic participants who lived in Canada (n = 13) or the United Kingdom (n = 11) and had experience with the menopausal transition. Transcripts were coded and analysed by four team members using reflexive thematic analysis. Four themes and eight subthemes were identified: (1) Complexity, multiplicity and intensity of symptoms (0 subthemes); (2) Life experience and adversity converging at midlife (three subthemes); (3) The importance of knowledge and connection (two subthemes); and (4) Barriers to support and care (three subthemes). Limitations include a potential sample bias towards difficult experiences of menopause. The majority of our sample had a late diagnosis or discovery of autism, and their experiences might not generalize to wider autistic populations. This research may help autistic people prepare for menopause and recognize symptoms earlier. Hearing about the experiences of others may let autistic people who struggle with menopause know they are not alone. Lay abstract Previous studies report that menopause can be a very difficult transition for some autistic people. This study focuses on how autistic people experience menopause and what support and information might help them. Autistic Community Research Associates played an important role in the research and co-authored this article. We held four focus groups and eight interviews online with 24 autistic participants who lived in either Canada (n = 13) or the United Kingdom (n = 11). We analysed participant conversations using a method called reflexive thematic analysis. Participants described many intense challenges during menopause. Four themes and eight subthemes were identified across participant groups: (1) Complexity, multiplicity and intensity of symptoms (0 subthemes); (2) Life experience and adversity converging at midlife (three subthemes); (3) The importance of knowledge and connection (two subthemes); and (4) Barriers to support and care (three subthemes). The experiences of our participants may not be the same as other autistic people, and the study could have been more inclusive of diverse autistic groups. However, hearing about the experiences of others may provide reassurance to autistic people who struggle with menopause and let them know they are not alone. En ligne : https://dx.doi.org/10.1177/13623613241244548 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 A qualitative exploration of an autism-specific self-compassion program: The ASPAA / Chris EDWARDS in Autism, 28-6 (June 2024)
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Titre : A qualitative exploration of an autism-specific self-compassion program: The ASPAA Type de document : Texte imprimé et/ou numérique Auteurs : Chris EDWARDS, Auteur ; Vicki GIBBS, Auteur ; Abigail M.A. LOVE, Auteur ; Lydia BROWN, Auteur ; Ru Ying CAI, Auteur Article en page(s) : p.1419-1430 Langues : Anglais (eng) Mots-clés : autistic adults intervention online qualitative research self-compassion Index. décimale : PER Périodiques Résumé : As mental health concerns coupled with inadequate supports have been described as reaching crisis proportions in autistic people, there is a pressing need for accessible and effective support systems. While self-compassion has shown various benefits in the general population, its application in supporting autistic individuals remains limited. This study investigated the experiences of 39 autistic adults who participated in an autism-specific online self-compassion program. The program included a series of five modules which incorporated psychoeducation, meditation, and self-reflective exercises that were completed over a 5-week period. Qualitative data was collected through weekly check-ins and a post-program survey, which underwent thematic analysis through the lens of an autistic researcher resulting in four key themes: the positive impact of self-compassion, challenges faced during the program, recognizing self-compassion as a journey, and the value of program adaptations. These findings shed light on the experiences of autistic adults engaging with self-compassion interventions, highlighting both the benefits and barriers they encountered. The study underscores the importance of developing tailored interventions that consider the unique needs and perspectives of autistic individuals to promote improved mental health outcomes and foster inclusivity. Lay abstract Autistic people often struggle to find the right support for their mental health. We wanted to change that by trying a new approach to help autistic adults with their emotions and well-being. We focused on something called "self-compassion," which is a way of being kind and understanding toward ourselves. This approach has worked well for many people, but we didn?t know if it would work for autistic individuals. We invited 39 autistic adults to join an online program that taught them about self-compassion. The program lasted 5?weeks and included educational materials, meditation exercises, and self-reflection activities. We asked the participants for feedback each week and at the end of the program. From their responses, we discovered four important things. First, self-compassion had a big positive impact on the well-being of autistic adults. Second, they faced some challenges during the program. Third, they saw self-compassion as a journey that takes time and practice. Finally, they described how they valued changes to help autistic people engage with the program. Our findings show that self-compassion can really help autistic adults. We learned about the benefits they experienced and the difficulties they faced. Most importantly, we found that personalized support is crucial for autistic individuals. By creating programs that consider their specific needs, we can improve their mental health and make their lives better. En ligne : https://dx.doi.org/10.1177/13623613241234097 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529
in Autism > 28-6 (June 2024) . - p.1419-1430[article] A qualitative exploration of an autism-specific self-compassion program: The ASPAA [Texte imprimé et/ou numérique] / Chris EDWARDS, Auteur ; Vicki GIBBS, Auteur ; Abigail M.A. LOVE, Auteur ; Lydia BROWN, Auteur ; Ru Ying CAI, Auteur . - p.1419-1430.
Langues : Anglais (eng)
in Autism > 28-6 (June 2024) . - p.1419-1430
Mots-clés : autistic adults intervention online qualitative research self-compassion Index. décimale : PER Périodiques Résumé : As mental health concerns coupled with inadequate supports have been described as reaching crisis proportions in autistic people, there is a pressing need for accessible and effective support systems. While self-compassion has shown various benefits in the general population, its application in supporting autistic individuals remains limited. This study investigated the experiences of 39 autistic adults who participated in an autism-specific online self-compassion program. The program included a series of five modules which incorporated psychoeducation, meditation, and self-reflective exercises that were completed over a 5-week period. Qualitative data was collected through weekly check-ins and a post-program survey, which underwent thematic analysis through the lens of an autistic researcher resulting in four key themes: the positive impact of self-compassion, challenges faced during the program, recognizing self-compassion as a journey, and the value of program adaptations. These findings shed light on the experiences of autistic adults engaging with self-compassion interventions, highlighting both the benefits and barriers they encountered. The study underscores the importance of developing tailored interventions that consider the unique needs and perspectives of autistic individuals to promote improved mental health outcomes and foster inclusivity. Lay abstract Autistic people often struggle to find the right support for their mental health. We wanted to change that by trying a new approach to help autistic adults with their emotions and well-being. We focused on something called "self-compassion," which is a way of being kind and understanding toward ourselves. This approach has worked well for many people, but we didn?t know if it would work for autistic individuals. We invited 39 autistic adults to join an online program that taught them about self-compassion. The program lasted 5?weeks and included educational materials, meditation exercises, and self-reflection activities. We asked the participants for feedback each week and at the end of the program. From their responses, we discovered four important things. First, self-compassion had a big positive impact on the well-being of autistic adults. Second, they faced some challenges during the program. Third, they saw self-compassion as a journey that takes time and practice. Finally, they described how they valued changes to help autistic people engage with the program. Our findings show that self-compassion can really help autistic adults. We learned about the benefits they experienced and the difficulties they faced. Most importantly, we found that personalized support is crucial for autistic individuals. By creating programs that consider their specific needs, we can improve their mental health and make their lives better. En ligne : https://dx.doi.org/10.1177/13623613241234097 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 Access to Part C, Early Intervention for children younger than 4?years evaluated for autism spectrum disorder / Adriana I. MENDEZ in Autism, 28-6 (June 2024)
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Titre : Access to Part C, Early Intervention for children younger than 4?years evaluated for autism spectrum disorder Type de document : Texte imprimé et/ou numérique Auteurs : Adriana I. MENDEZ, Auteur ; Emma MCQUEEN, Auteur ; Scott GILLESPIE, Auteur ; Ami KLIN, Auteur ; Cheryl KLAIMAN, Auteur ; Katherine PICKARD, Auteur Article en page(s) : p.1431-1440 Langues : Anglais (eng) Mots-clés : autism spectrum disorder disparities early intervention service access Index. décimale : PER Périodiques Résumé : Despite consensus on the importance of early detection and intervention for autistic children, health disparities exist, limiting access to timely services. One specific service type in the United States is Individuals with Disabilities Education Act, Part C Early Intervention programs, which are federally funded interventions for children birth-to-three with developmental delays. This study aimed to assess access to Part C, Early Intervention services for children who were evaluated for autism spectrum disorder and to examine factors that predicted parent-reported access to these services. This study extracted sociodemographic and service access data from the medical records of 709 children aged 12-40?months who were evaluated for autism spectrum disorder. Results showed that only 50% of the sample had reportedly accessed Part C, Early Intervention services. Those who identified as Black had decreased odds of having accessed Part C, Early Intervention, relative to those who identified as White, while those with a lower age of first parent concern had increased odds of having accessed Part C, Early Intervention. When inputting the independently significant variables into the model, both variables, identifying as Black and a lower age of first concern, remained significantly associated with accessing Part C, Early Intervention. Future work should investigate how these disparities come to be. Lay abstract Health disparities are defined as preventable differences in the opportunities to achieve optimal health outcomes experienced by marginalized and underrepresented communities. For families with autistic children, health disparities limit accessing early intervention services-which have been found to improve quality of life and other outcomes. One specific early intervention service in the United States is Individuals with Disabilities Education Act, Part C Early Intervention programs, which are federally funded interventions for children birth-to-three with developmental delays. This study adds to this topic by examining which factors impact accessing Part C, Early Intervention services for children who were evaluated for autism. Results showed that only half of the sample received these services despite there being concerns about development for all children. In addition, results showed that those who identified as Black had decreased odds of having accessed Part C, Early Intervention compared to those who identified as White. These results suggest that there are disparities when it comes to accessing important early intervention services that may be negatively impacting the Black autistic community. En ligne : https://dx.doi.org/10.1177/13623613241229150 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529
in Autism > 28-6 (June 2024) . - p.1431-1440[article] Access to Part C, Early Intervention for children younger than 4?years evaluated for autism spectrum disorder [Texte imprimé et/ou numérique] / Adriana I. MENDEZ, Auteur ; Emma MCQUEEN, Auteur ; Scott GILLESPIE, Auteur ; Ami KLIN, Auteur ; Cheryl KLAIMAN, Auteur ; Katherine PICKARD, Auteur . - p.1431-1440.
Langues : Anglais (eng)
in Autism > 28-6 (June 2024) . - p.1431-1440
Mots-clés : autism spectrum disorder disparities early intervention service access Index. décimale : PER Périodiques Résumé : Despite consensus on the importance of early detection and intervention for autistic children, health disparities exist, limiting access to timely services. One specific service type in the United States is Individuals with Disabilities Education Act, Part C Early Intervention programs, which are federally funded interventions for children birth-to-three with developmental delays. This study aimed to assess access to Part C, Early Intervention services for children who were evaluated for autism spectrum disorder and to examine factors that predicted parent-reported access to these services. This study extracted sociodemographic and service access data from the medical records of 709 children aged 12-40?months who were evaluated for autism spectrum disorder. Results showed that only 50% of the sample had reportedly accessed Part C, Early Intervention services. Those who identified as Black had decreased odds of having accessed Part C, Early Intervention, relative to those who identified as White, while those with a lower age of first parent concern had increased odds of having accessed Part C, Early Intervention. When inputting the independently significant variables into the model, both variables, identifying as Black and a lower age of first concern, remained significantly associated with accessing Part C, Early Intervention. Future work should investigate how these disparities come to be. Lay abstract Health disparities are defined as preventable differences in the opportunities to achieve optimal health outcomes experienced by marginalized and underrepresented communities. For families with autistic children, health disparities limit accessing early intervention services-which have been found to improve quality of life and other outcomes. One specific early intervention service in the United States is Individuals with Disabilities Education Act, Part C Early Intervention programs, which are federally funded interventions for children birth-to-three with developmental delays. This study adds to this topic by examining which factors impact accessing Part C, Early Intervention services for children who were evaluated for autism. Results showed that only half of the sample received these services despite there being concerns about development for all children. In addition, results showed that those who identified as Black had decreased odds of having accessed Part C, Early Intervention compared to those who identified as White. These results suggest that there are disparities when it comes to accessing important early intervention services that may be negatively impacting the Black autistic community. En ligne : https://dx.doi.org/10.1177/13623613241229150 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 Addressing disruptive behaviors within naturalistic developmental behavioral interventions: Clinical decision-making, intervention outcomes, and implications for practice / Elizabeth H. KUSHNER in Autism, 28-6 (June 2024)
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Titre : Addressing disruptive behaviors within naturalistic developmental behavioral interventions: Clinical decision-making, intervention outcomes, and implications for practice Type de document : Texte imprimé et/ou numérique Auteurs : Elizabeth H. KUSHNER, Auteur ; Nicole HENDRIX, Auteur ; Nailah ISLAM, Auteur ; Katherine PICKARD, Auteur Article en page(s) : p.1441-1456 Langues : Anglais (eng) Mots-clés : disruptive behaviors implementation science interventions-psychosocial/behavioral Index. décimale : PER Périodiques Résumé : Naturalistic developmental behavioral interventions are an empirically supported intervention approach for young autistic children. Despite the prevalence of disruptive behaviors among autistic children, most manualized caregiver-mediated naturalistic developmental behavioral interventions include limited formal guidance on when and how to manage disruptive behavior. The present study sought to characterize how clinicians address disruptive behaviors within the caregiver-mediated naturalistic developmental behavioral intervention, Project ImPACT, the effect of disruptive behavior on Project ImPACT delivery, and the extent to which disruptive behavior impacts social communication outcomes. Data collection was embedded within outpatient early intervention services and included clinicians' report of adaptations to address behavior within the electronic medical record, child social communication outcomes from 124 children and their caregivers, and interviews with certified Project ImPACT coaches and trainers. Results indicate that close to one-third of Project ImPACT sessions included adaptations made to address behavior and regulation. Furthermore, adaptations made to address disruptive behavior were associated with more adaptations to Project ImPACT overall, although behavior adaptations were not associated with child social communication outcomes. Qualitatively, clinicians described using a flexible approach to integrate content and coaching related to behavior and regulation. The present study indicates several future directions for supporting clinicians in addressing behavior and regulation within the naturalistic developmental behavioral intervention framework. Lay Abstract Naturalistic developmental behavioral interventions are a common and well-researched type of intervention for young autistic children that focus on supporting social communication. These interventions often do not include formal guidelines on how to address disruptive behaviors, even though they are common among autistic children. This study measured how often clinicians delivering a specific naturalistic developmental behavioral intervention, Project ImPACT, adapted how they delivered the program to address disruptive behavior, and how these adaptations related to children?s social communication outcomes at the end of their participation in the intervention. We also spoke with clinicians about how they address disruptive behavior and emotion regulation during their sessions. In this study, clinicians adapted Project ImPACT to address disruptive behaviors in about one-third of all sessions. These adaptations did not affect children?s social communication outcomes. Clinicians discussed how they felt social communication, disruptive behavior, and emotion regulation are linked to one another and that they often try to integrate intervention strategies to address each of these areas. However, they note that a clinicians' approach to addressing disruptive behavior might vary depending on their level of training and experience. These results indicate several future directions for supporting clinicians in addressing behavior and regulation effectively within these types of interventions. En ligne : https://dx.doi.org/10.1177/13623613231203308 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529
in Autism > 28-6 (June 2024) . - p.1441-1456[article] Addressing disruptive behaviors within naturalistic developmental behavioral interventions: Clinical decision-making, intervention outcomes, and implications for practice [Texte imprimé et/ou numérique] / Elizabeth H. KUSHNER, Auteur ; Nicole HENDRIX, Auteur ; Nailah ISLAM, Auteur ; Katherine PICKARD, Auteur . - p.1441-1456.
Langues : Anglais (eng)
in Autism > 28-6 (June 2024) . - p.1441-1456
Mots-clés : disruptive behaviors implementation science interventions-psychosocial/behavioral Index. décimale : PER Périodiques Résumé : Naturalistic developmental behavioral interventions are an empirically supported intervention approach for young autistic children. Despite the prevalence of disruptive behaviors among autistic children, most manualized caregiver-mediated naturalistic developmental behavioral interventions include limited formal guidance on when and how to manage disruptive behavior. The present study sought to characterize how clinicians address disruptive behaviors within the caregiver-mediated naturalistic developmental behavioral intervention, Project ImPACT, the effect of disruptive behavior on Project ImPACT delivery, and the extent to which disruptive behavior impacts social communication outcomes. Data collection was embedded within outpatient early intervention services and included clinicians' report of adaptations to address behavior within the electronic medical record, child social communication outcomes from 124 children and their caregivers, and interviews with certified Project ImPACT coaches and trainers. Results indicate that close to one-third of Project ImPACT sessions included adaptations made to address behavior and regulation. Furthermore, adaptations made to address disruptive behavior were associated with more adaptations to Project ImPACT overall, although behavior adaptations were not associated with child social communication outcomes. Qualitatively, clinicians described using a flexible approach to integrate content and coaching related to behavior and regulation. The present study indicates several future directions for supporting clinicians in addressing behavior and regulation within the naturalistic developmental behavioral intervention framework. Lay Abstract Naturalistic developmental behavioral interventions are a common and well-researched type of intervention for young autistic children that focus on supporting social communication. These interventions often do not include formal guidelines on how to address disruptive behaviors, even though they are common among autistic children. This study measured how often clinicians delivering a specific naturalistic developmental behavioral intervention, Project ImPACT, adapted how they delivered the program to address disruptive behavior, and how these adaptations related to children?s social communication outcomes at the end of their participation in the intervention. We also spoke with clinicians about how they address disruptive behavior and emotion regulation during their sessions. In this study, clinicians adapted Project ImPACT to address disruptive behaviors in about one-third of all sessions. These adaptations did not affect children?s social communication outcomes. Clinicians discussed how they felt social communication, disruptive behavior, and emotion regulation are linked to one another and that they often try to integrate intervention strategies to address each of these areas. However, they note that a clinicians' approach to addressing disruptive behavior might vary depending on their level of training and experience. These results indicate several future directions for supporting clinicians in addressing behavior and regulation effectively within these types of interventions. En ligne : https://dx.doi.org/10.1177/13623613231203308 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 An ecological systems model of employee experience in industry-led autism employment programmes / Simon M. BURY in Autism, 28-6 (June 2024)
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Titre : An ecological systems model of employee experience in industry-led autism employment programmes Type de document : Texte imprimé et/ou numérique Auteurs : Simon M. BURY, Auteur ; Rosslynn ZULLA, Auteur ; Jennifer R. SPOOR, Auteur ; Rebecca L. FLOWER, Auteur ; David B. NICHOLAS, Auteur ; Darren HEDLEY, Auteur Article en page(s) : p.1457-1470 Langues : Anglais (eng) Mots-clés : autism employment autistic adults ecological systems supported employment Index. décimale : PER Périodiques Résumé : Industry-led employment programmes have emerged to transition autistic people into employment and meet industry labour needs. However, theoretical research is limited in this area, often failing to appreciate the influence of the broader employment ecosystem. In this study, we interviewed 33 autistic employees (n = 29 males, Mage = 29.00?years) from two industry-led employment programmes regarding their experience of the programme?s supports, relationships and impact. We used qualitative content analysis to identify five themes: (1) working involves multiple job tasks that evolve as the employment context changes; (2) workplace relations are diverse and shaped by the type of work and the work environment; (3) workplace needs evolve as autistic individuals navigate the work environment; (4) developing a professional identity in the workplace through mastery and integration; and (5) recommendations for the development of supportive workplace environments for autistic individuals. We describe the way that factors within (e.g. training) and outside the two employment programmes changed and interacted over time to contribute to the participant?s work experience and professional identity. Building on ecological systems theory, our unique contribution to the literature is a new model capturing individual and workplace factors that contribute to the work experience of autistic people who participate in industry employment programmes. Lay Abstract We asked 33 autistic adults from two industry-led employment programmes about their experiences in the programmes. These are programmes started by companies to recruit and support autistic people in work. We also asked about their workplace supports, relationships and how they thought the programme had impacted their life. Understanding the experiences of people in these industry-led employment programmes is important as the information can help to improve the programmes and participants' experiences. After reviewing the interviews, we found five themes that best described the employee?s experience: (1) working involves multiple job tasks that evolve as the employment context changes; (2) relationships in the workplace are diverse and are influenced by the type of work participants do and the work environment; (3) workplace needs change as the autistic employees learn to navigate their work environment; (4) autistic employees develop a professional identity in the workplace as they master work and feel more integrated in the workplace; and (5) recommendations for the development of supportive workplace environments for autistic people. We explored the way that aspects of the two employment programmes (e.g. training) and factors outside the programme changed with time and contributed to the participant?s experience. We developed a new model to capture individual and workplace factors that contribute to the experience of autistic people who participate in industry employment programmes. En ligne : https://dx.doi.org/10.1177/13623613241241574 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529
in Autism > 28-6 (June 2024) . - p.1457-1470[article] An ecological systems model of employee experience in industry-led autism employment programmes [Texte imprimé et/ou numérique] / Simon M. BURY, Auteur ; Rosslynn ZULLA, Auteur ; Jennifer R. SPOOR, Auteur ; Rebecca L. FLOWER, Auteur ; David B. NICHOLAS, Auteur ; Darren HEDLEY, Auteur . - p.1457-1470.
Langues : Anglais (eng)
in Autism > 28-6 (June 2024) . - p.1457-1470
Mots-clés : autism employment autistic adults ecological systems supported employment Index. décimale : PER Périodiques Résumé : Industry-led employment programmes have emerged to transition autistic people into employment and meet industry labour needs. However, theoretical research is limited in this area, often failing to appreciate the influence of the broader employment ecosystem. In this study, we interviewed 33 autistic employees (n = 29 males, Mage = 29.00?years) from two industry-led employment programmes regarding their experience of the programme?s supports, relationships and impact. We used qualitative content analysis to identify five themes: (1) working involves multiple job tasks that evolve as the employment context changes; (2) workplace relations are diverse and shaped by the type of work and the work environment; (3) workplace needs evolve as autistic individuals navigate the work environment; (4) developing a professional identity in the workplace through mastery and integration; and (5) recommendations for the development of supportive workplace environments for autistic individuals. We describe the way that factors within (e.g. training) and outside the two employment programmes changed and interacted over time to contribute to the participant?s work experience and professional identity. Building on ecological systems theory, our unique contribution to the literature is a new model capturing individual and workplace factors that contribute to the work experience of autistic people who participate in industry employment programmes. Lay Abstract We asked 33 autistic adults from two industry-led employment programmes about their experiences in the programmes. These are programmes started by companies to recruit and support autistic people in work. We also asked about their workplace supports, relationships and how they thought the programme had impacted their life. Understanding the experiences of people in these industry-led employment programmes is important as the information can help to improve the programmes and participants' experiences. After reviewing the interviews, we found five themes that best described the employee?s experience: (1) working involves multiple job tasks that evolve as the employment context changes; (2) relationships in the workplace are diverse and are influenced by the type of work participants do and the work environment; (3) workplace needs change as the autistic employees learn to navigate their work environment; (4) autistic employees develop a professional identity in the workplace as they master work and feel more integrated in the workplace; and (5) recommendations for the development of supportive workplace environments for autistic people. We explored the way that aspects of the two employment programmes (e.g. training) and factors outside the programme changed with time and contributed to the participant?s experience. We developed a new model to capture individual and workplace factors that contribute to the experience of autistic people who participate in industry employment programmes. En ligne : https://dx.doi.org/10.1177/13623613241241574 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 A longitudinal study of loneliness in autism and other neurodevelopmental disabilities: Coping with loneliness from childhood through adulthood / Hillary SCHILTZ in Autism, 28-6 (June 2024)
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Titre : A longitudinal study of loneliness in autism and other neurodevelopmental disabilities: Coping with loneliness from childhood through adulthood Type de document : Texte imprimé et/ou numérique Auteurs : Hillary SCHILTZ, Auteur ; Dena GOHARI, Auteur ; Jamie PARK, Auteur ; Catherine LORD, Auteur Article en page(s) : p.1471-1486 Langues : Anglais (eng) Mots-clés : autism coping lifespan loneliness Index. décimale : PER Périodiques Résumé : Many autistic people and people with non-spectrum neurodevelopmental disabilities (e.g. intellectual disability) report feeling lonely, which can negatively impact their well-being. There is little longitudinal research, however, tracking changes in how autistic people experience, conceptualize, and cope with loneliness throughout their lives. A longitudinal sample of 114 people, which included autistic participants and participants with neurodevelopmental disabilities, characterized experiences of loneliness, perceptions of other people?s loneliness, and strategies used to cope with loneliness from childhood to adulthood. Level of loneliness and coping strategies were coded from Autism Diagnostic Observation Schedule Modules 3 and 4 protocol forms. Autism Diagnostic Observation Schedule Loneliness Ratings were correlated across time and increased from adolescence to young adulthood. The most common loneliness coping strategies were Behavioral Distraction (e.g. watching TV) and Instrumental Action (e.g. seeking social contact), which were both used by more people in adulthood than childhood. Those who used Behavioral Distraction and a greater number of coping strategies had higher Autism Diagnostic Observation Schedule Loneliness-Self Ratings (i.e. were lonelier) during adolescence and adulthood. Findings highlight adulthood as a particularly vulnerable time for loneliness and indicate a need for more support and social opportunities for autistic adults and adults with neurodevelopmental disabilities who wish to make more social connections. Lay abstract We know that many autistic people feel lonely, but we don?t know whether their loneliness changes over time. Our research study followed autistic people and people with other non-spectrum neurodevelopmental disabilities from childhood through young adulthood and asked them about their loneliness. While many people told us they felt lonely or very lonely, a sizable group also told us that they do not feel lonely. We found that people who reported feeling lonely earlier in life were likely to also report feeling lonely later in life. Overall, autistic people and people with other neurodevelopmental disabilities in our study became lonelier from adolescence to adulthood. People described multiple ways they cope with feeling lonely, such as distracting themselves or reaching out to connect with another person. People who used distraction tended to be lonelier than those who did not. Our findings tell us that there is a need for greater support of social connections for many autistic people as they become adults. En ligne : https://dx.doi.org/10.1177/13623613231217337 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529
in Autism > 28-6 (June 2024) . - p.1471-1486[article] A longitudinal study of loneliness in autism and other neurodevelopmental disabilities: Coping with loneliness from childhood through adulthood [Texte imprimé et/ou numérique] / Hillary SCHILTZ, Auteur ; Dena GOHARI, Auteur ; Jamie PARK, Auteur ; Catherine LORD, Auteur . - p.1471-1486.
Langues : Anglais (eng)
in Autism > 28-6 (June 2024) . - p.1471-1486
Mots-clés : autism coping lifespan loneliness Index. décimale : PER Périodiques Résumé : Many autistic people and people with non-spectrum neurodevelopmental disabilities (e.g. intellectual disability) report feeling lonely, which can negatively impact their well-being. There is little longitudinal research, however, tracking changes in how autistic people experience, conceptualize, and cope with loneliness throughout their lives. A longitudinal sample of 114 people, which included autistic participants and participants with neurodevelopmental disabilities, characterized experiences of loneliness, perceptions of other people?s loneliness, and strategies used to cope with loneliness from childhood to adulthood. Level of loneliness and coping strategies were coded from Autism Diagnostic Observation Schedule Modules 3 and 4 protocol forms. Autism Diagnostic Observation Schedule Loneliness Ratings were correlated across time and increased from adolescence to young adulthood. The most common loneliness coping strategies were Behavioral Distraction (e.g. watching TV) and Instrumental Action (e.g. seeking social contact), which were both used by more people in adulthood than childhood. Those who used Behavioral Distraction and a greater number of coping strategies had higher Autism Diagnostic Observation Schedule Loneliness-Self Ratings (i.e. were lonelier) during adolescence and adulthood. Findings highlight adulthood as a particularly vulnerable time for loneliness and indicate a need for more support and social opportunities for autistic adults and adults with neurodevelopmental disabilities who wish to make more social connections. Lay abstract We know that many autistic people feel lonely, but we don?t know whether their loneliness changes over time. Our research study followed autistic people and people with other non-spectrum neurodevelopmental disabilities from childhood through young adulthood and asked them about their loneliness. While many people told us they felt lonely or very lonely, a sizable group also told us that they do not feel lonely. We found that people who reported feeling lonely earlier in life were likely to also report feeling lonely later in life. Overall, autistic people and people with other neurodevelopmental disabilities in our study became lonelier from adolescence to adulthood. People described multiple ways they cope with feeling lonely, such as distracting themselves or reaching out to connect with another person. People who used distraction tended to be lonelier than those who did not. Our findings tell us that there is a need for greater support of social connections for many autistic people as they become adults. En ligne : https://dx.doi.org/10.1177/13623613231217337 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 App-based meditation habits maintain reductions in depression symptoms among autistic adults / Chad STECHER in Autism, 28-6 (June 2024)
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Titre : App-based meditation habits maintain reductions in depression symptoms among autistic adults Type de document : Texte imprimé et/ou numérique Auteurs : Chad STECHER, Auteur ; Broc A. PAGNI, Auteur ; Sara CLOONAN, Auteur ; Schuyler VINK, Auteur ; Ethan HILL, Auteur ; Destiny OGBEAMA, Auteur ; Shanna DELANEY, Auteur ; B. Blair BRADEN, Auteur Article en page(s) : p.1487-1502 Langues : Anglais (eng) Mots-clés : anchoring depression meditation mindfulness mobile health Index. décimale : PER Périodiques Résumé : Mobile app-based meditation is an effective self-care solution for depression, but limited evidence exists for the long-term benefits among autistic adults, who are at increased risk of experiencing depression. The primary goal of this study was to examine the feasibility and effectiveness of incorporating habit training into an app-based meditation intervention to maintain reductions in depressive symptoms among autistic adults. Participants were randomized to an App Only (who only received access to the meditation app), App?+?Habit Training (who received the meditation app and instructions for anchoring their app-based meditation to an existing routine), or a waitlist control group. All participants completed questionnaires at baseline, post-intervention, and 6 months post-intervention, and responded to SMS ecological momentary assessments regarding their meditation practice during the 8-week intervention and an 8-week follow-up period. The results show that the App?+?Habit Training group reported significantly more days with meditation per week during and after the intervention (p < 0.05) and also experienced a larger decrease in depression symptoms post-intervention and 6 months later (p < 0.05) relative to the control group. These findings demonstrate that app-based meditation habits are an effective self-care solution for autistic adults with depression, and anchoring is a promising strategy for establishing other healthy habits among autistic adults. Lay Abstract Existing research has identified an increased risk of depression among autistic adults, which can negatively impact their adaptive functioning abilities and socioeconomic outcomes. Mobile app-based meditation is a feasible, accessible, and effective self-care solution for depression among neurotypical adults, but there is limited evidence for the long-term benefits of app-based meditation among autistic adults. Habits are a key behavioral strategy for maintaining behavior change, and anchoring is one effective habit formation intervention that has yet to be tested among autistic adults. This study demonstrates that it is both feasible and effective to integrate the anchoring habit formation strategy into an app-based meditation intervention for establishing meditation habits among autistic adults. In addition, the study shows that app-based meditation habits were successful at maintaining reductions in depressive symptoms over 6 months. These results demonstrate the power of anchoring-based habit formation interventions for establishing healthy habits among autistic adults, which offers a promising behavioral intervention technique for establishing other healthy habits among autistic adults. The study also shows that app-based meditation habits are an effective long-term self-care solution for managing depressive symptoms among autistic adults that should be used by mental health providers and policymakers. Future research should test this combined anchoring and app-based meditation intervention technique among larger samples of autistic adults and over longer durations to better understand the mechanisms underlying the success of this intervention. En ligne : https://dx.doi.org/10.1177/13623613231200679 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529
in Autism > 28-6 (June 2024) . - p.1487-1502[article] App-based meditation habits maintain reductions in depression symptoms among autistic adults [Texte imprimé et/ou numérique] / Chad STECHER, Auteur ; Broc A. PAGNI, Auteur ; Sara CLOONAN, Auteur ; Schuyler VINK, Auteur ; Ethan HILL, Auteur ; Destiny OGBEAMA, Auteur ; Shanna DELANEY, Auteur ; B. Blair BRADEN, Auteur . - p.1487-1502.
Langues : Anglais (eng)
in Autism > 28-6 (June 2024) . - p.1487-1502
Mots-clés : anchoring depression meditation mindfulness mobile health Index. décimale : PER Périodiques Résumé : Mobile app-based meditation is an effective self-care solution for depression, but limited evidence exists for the long-term benefits among autistic adults, who are at increased risk of experiencing depression. The primary goal of this study was to examine the feasibility and effectiveness of incorporating habit training into an app-based meditation intervention to maintain reductions in depressive symptoms among autistic adults. Participants were randomized to an App Only (who only received access to the meditation app), App?+?Habit Training (who received the meditation app and instructions for anchoring their app-based meditation to an existing routine), or a waitlist control group. All participants completed questionnaires at baseline, post-intervention, and 6 months post-intervention, and responded to SMS ecological momentary assessments regarding their meditation practice during the 8-week intervention and an 8-week follow-up period. The results show that the App?+?Habit Training group reported significantly more days with meditation per week during and after the intervention (p < 0.05) and also experienced a larger decrease in depression symptoms post-intervention and 6 months later (p < 0.05) relative to the control group. These findings demonstrate that app-based meditation habits are an effective self-care solution for autistic adults with depression, and anchoring is a promising strategy for establishing other healthy habits among autistic adults. Lay Abstract Existing research has identified an increased risk of depression among autistic adults, which can negatively impact their adaptive functioning abilities and socioeconomic outcomes. Mobile app-based meditation is a feasible, accessible, and effective self-care solution for depression among neurotypical adults, but there is limited evidence for the long-term benefits of app-based meditation among autistic adults. Habits are a key behavioral strategy for maintaining behavior change, and anchoring is one effective habit formation intervention that has yet to be tested among autistic adults. This study demonstrates that it is both feasible and effective to integrate the anchoring habit formation strategy into an app-based meditation intervention for establishing meditation habits among autistic adults. In addition, the study shows that app-based meditation habits were successful at maintaining reductions in depressive symptoms over 6 months. These results demonstrate the power of anchoring-based habit formation interventions for establishing healthy habits among autistic adults, which offers a promising behavioral intervention technique for establishing other healthy habits among autistic adults. The study also shows that app-based meditation habits are an effective long-term self-care solution for managing depressive symptoms among autistic adults that should be used by mental health providers and policymakers. Future research should test this combined anchoring and app-based meditation intervention technique among larger samples of autistic adults and over longer durations to better understand the mechanisms underlying the success of this intervention. En ligne : https://dx.doi.org/10.1177/13623613231200679 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 Atypical pattern separation memory and its association with restricted interests and repetitive behaviors in autistic children / Lang CHEN in Autism, 28-6 (June 2024)
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Titre : Atypical pattern separation memory and its association with restricted interests and repetitive behaviors in autistic children Type de document : Texte imprimé et/ou numérique Auteurs : Lang CHEN, Auteur ; Jin LIU, Auteur ; Julia Boram KANG, Auteur ; Miriam ROSENBERG-LEE, Auteur ; Daniel A. ABRAMS, Auteur ; Vinod MENON, Auteur Article en page(s) : p.1503-1518 Langues : Anglais (eng) Mots-clés : ASD heterogeneity pattern separation recognition memory RRIB Index. décimale : PER Périodiques Résumé : Emerging research suggests that episodic memory challenges are commonly encountered by autistic individuals; however, the specific nature of these memory challenges remains elusive. Here, we address critical gaps in the literature by examining pattern separation memory, the ability to store distinct memories of similar stimuli, and its links to the core autistic trait of repetitive, restricted interests and behaviors. Utilizing a large sample of over 120 autistic children and well-matched non-autistic peers, we found that autistic children showed significantly reduced performance on pattern separation memory. A clustering analysis identified three distinct pattern separation memory profiles in autism, each characterized by reduced or increased generalization abilities. Importantly, pattern separation memory was negatively correlated with the severity of repetitive, restricted interest and behavior symptoms in autism. These findings offer new evidence for challenges in pattern separation memory in autism and emphasize the need to consider these challenges when assessing and supporting autistic individuals in educational and clinical settings. Lay abstract Memory challenges remain understudied in childhood autism. Our study investigates one specific aspect of memory function, known as pattern separation memory, in autistic children. Pattern separation memory refers to the critical ability to store unique memories of similar stimuli; however, its role in childhood autism remains largely uncharted. Our study first uncovered that the pattern separation memory was significantly reduced in autistic children, and then showed that reduced memory performance was linked to their symptoms of repetitive, restricted interest and behavior. We also identified distinct subgroups with profiles of reduced and increased generalization for pattern separation memory. More than 72% of autistic children showed a tendency to reduce memory generalization, focusing heavily on unique details of objects for memorization. This focus made it challenging for them to identify commonalities across similar entities. Interestingly, a smaller proportion of autistic children displayed an opposite pattern of increased generalization, marked by challenges in differentiating between similar yet distinct objects. Our findings advance the understanding of memory function in autism and have practical implications for devising personalized learning strategies that align with the unique memory patterns exhibited by autistic children. This study will be of broad interest to researchers in psychology, psychiatry, and brain development as well as teachers, parents, clinicians, and the wider public. En ligne : https://dx.doi.org/10.1177/13623613231223354 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529
in Autism > 28-6 (June 2024) . - p.1503-1518[article] Atypical pattern separation memory and its association with restricted interests and repetitive behaviors in autistic children [Texte imprimé et/ou numérique] / Lang CHEN, Auteur ; Jin LIU, Auteur ; Julia Boram KANG, Auteur ; Miriam ROSENBERG-LEE, Auteur ; Daniel A. ABRAMS, Auteur ; Vinod MENON, Auteur . - p.1503-1518.
Langues : Anglais (eng)
in Autism > 28-6 (June 2024) . - p.1503-1518
Mots-clés : ASD heterogeneity pattern separation recognition memory RRIB Index. décimale : PER Périodiques Résumé : Emerging research suggests that episodic memory challenges are commonly encountered by autistic individuals; however, the specific nature of these memory challenges remains elusive. Here, we address critical gaps in the literature by examining pattern separation memory, the ability to store distinct memories of similar stimuli, and its links to the core autistic trait of repetitive, restricted interests and behaviors. Utilizing a large sample of over 120 autistic children and well-matched non-autistic peers, we found that autistic children showed significantly reduced performance on pattern separation memory. A clustering analysis identified three distinct pattern separation memory profiles in autism, each characterized by reduced or increased generalization abilities. Importantly, pattern separation memory was negatively correlated with the severity of repetitive, restricted interest and behavior symptoms in autism. These findings offer new evidence for challenges in pattern separation memory in autism and emphasize the need to consider these challenges when assessing and supporting autistic individuals in educational and clinical settings. Lay abstract Memory challenges remain understudied in childhood autism. Our study investigates one specific aspect of memory function, known as pattern separation memory, in autistic children. Pattern separation memory refers to the critical ability to store unique memories of similar stimuli; however, its role in childhood autism remains largely uncharted. Our study first uncovered that the pattern separation memory was significantly reduced in autistic children, and then showed that reduced memory performance was linked to their symptoms of repetitive, restricted interest and behavior. We also identified distinct subgroups with profiles of reduced and increased generalization for pattern separation memory. More than 72% of autistic children showed a tendency to reduce memory generalization, focusing heavily on unique details of objects for memorization. This focus made it challenging for them to identify commonalities across similar entities. Interestingly, a smaller proportion of autistic children displayed an opposite pattern of increased generalization, marked by challenges in differentiating between similar yet distinct objects. Our findings advance the understanding of memory function in autism and have practical implications for devising personalized learning strategies that align with the unique memory patterns exhibited by autistic children. This study will be of broad interest to researchers in psychology, psychiatry, and brain development as well as teachers, parents, clinicians, and the wider public. En ligne : https://dx.doi.org/10.1177/13623613231223354 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 Autism and sexual and gender minority identity in college students: Examination of self-reported rates, functional outcomes, and treatment engagement / Elia F. SOTO in Autism, 28-6 (June 2024)
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Titre : Autism and sexual and gender minority identity in college students: Examination of self-reported rates, functional outcomes, and treatment engagement Type de document : Texte imprimé et/ou numérique Auteurs : Elia F. SOTO, Auteur ; Destiny ORANTES, Auteur ; Natalie RUSSO, Auteur ; Kevin M. ANTSHEL, Auteur Article en page(s) : p.1519-1539 Langues : Anglais (eng) Mots-clés : autism autism spectrum disorder college LGBTQ+ sexual and gender minority SGM Index. décimale : PER Périodiques Résumé : This study builds on existing literature on autism spectrum disorder (autism) and sexual and gender minority (SGM) identities and is the first to examine self-declared frequency rates, associated functional impairments, and treatment engagement levels for sexual minority (SM) and non-SM populations with and without autism cross-sectionally via a large nationwide college-student sample across 3?years. Using data from the American College Health Association-National College Health Assessment (ACHA-NCHA) III, we analyzed data from 81,286 college students (ages 18-25?years old) randomly selected from 75 U.S. colleges and universities. Included ACHA-NCHA-III measures consisted of self-reported demographics, SM and gender minority (GM) identities, autism diagnosis, stress, academic impairment, mental health symptoms, and treatment engagement. We found a 2.8% self-declared frequency of autism in the SM group, compared with 0.9% self-declared frequency among the non-SM sample. Autistic college students with both SM and GM identities had the greatest levels of reported adverse stress and the most negative academic and mental health outcomes (i.e., suicidality), followed by college students with two minority identities (i.e., Autism and SM, SM and GM), across all groups. These findings emphasize the need for mental healthcare providers to consider SM and GM identities in non-autistic and, especially, in autistic college students to assess suicide risk and inform treatment. Lay abstract Autistic individuals and those who identify with a sexual and/or gender minority are both at risk for various mental health concerns and related impairments. However, the connection between autism and sexual and/or gender minorities and mental health and functional outcomes is not clear. Here, we provide evidence of these connections by analyzing data from a large nationally representative dataset from the American College Health Association-National College Health Assessment III. We found that autistic college students who identify with both sexual and gender minorities reported the highest rates of stress, academic, and mental health concerns including suicidality when compared with autistic college students with or without a sexual and/or gender minority. In addition, college students with at least two identities, such as autism and a sexual minority identity or both a sexual and gender minority identity, reported the next highest rates of concern. These findings affirm the need for mental healthcare providers to consider the intersections of a sexual and gender minority identities in non-autistic and, especially, in autistic college students to develop and provide better support and resources. En ligne : https://dx.doi.org/10.1177/13623613241236228 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529
in Autism > 28-6 (June 2024) . - p.1519-1539[article] Autism and sexual and gender minority identity in college students: Examination of self-reported rates, functional outcomes, and treatment engagement [Texte imprimé et/ou numérique] / Elia F. SOTO, Auteur ; Destiny ORANTES, Auteur ; Natalie RUSSO, Auteur ; Kevin M. ANTSHEL, Auteur . - p.1519-1539.
Langues : Anglais (eng)
in Autism > 28-6 (June 2024) . - p.1519-1539
Mots-clés : autism autism spectrum disorder college LGBTQ+ sexual and gender minority SGM Index. décimale : PER Périodiques Résumé : This study builds on existing literature on autism spectrum disorder (autism) and sexual and gender minority (SGM) identities and is the first to examine self-declared frequency rates, associated functional impairments, and treatment engagement levels for sexual minority (SM) and non-SM populations with and without autism cross-sectionally via a large nationwide college-student sample across 3?years. Using data from the American College Health Association-National College Health Assessment (ACHA-NCHA) III, we analyzed data from 81,286 college students (ages 18-25?years old) randomly selected from 75 U.S. colleges and universities. Included ACHA-NCHA-III measures consisted of self-reported demographics, SM and gender minority (GM) identities, autism diagnosis, stress, academic impairment, mental health symptoms, and treatment engagement. We found a 2.8% self-declared frequency of autism in the SM group, compared with 0.9% self-declared frequency among the non-SM sample. Autistic college students with both SM and GM identities had the greatest levels of reported adverse stress and the most negative academic and mental health outcomes (i.e., suicidality), followed by college students with two minority identities (i.e., Autism and SM, SM and GM), across all groups. These findings emphasize the need for mental healthcare providers to consider SM and GM identities in non-autistic and, especially, in autistic college students to assess suicide risk and inform treatment. Lay abstract Autistic individuals and those who identify with a sexual and/or gender minority are both at risk for various mental health concerns and related impairments. However, the connection between autism and sexual and/or gender minorities and mental health and functional outcomes is not clear. Here, we provide evidence of these connections by analyzing data from a large nationally representative dataset from the American College Health Association-National College Health Assessment III. We found that autistic college students who identify with both sexual and gender minorities reported the highest rates of stress, academic, and mental health concerns including suicidality when compared with autistic college students with or without a sexual and/or gender minority. In addition, college students with at least two identities, such as autism and a sexual minority identity or both a sexual and gender minority identity, reported the next highest rates of concern. These findings affirm the need for mental healthcare providers to consider the intersections of a sexual and gender minority identities in non-autistic and, especially, in autistic college students to develop and provide better support and resources. En ligne : https://dx.doi.org/10.1177/13623613241236228 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 Autistic adults' views on the design and processes within randomised controlled trials: The APRiCoT study / Lucy BEASANT in Autism, 28-6 (June 2024)
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Titre : Autistic adults' views on the design and processes within randomised controlled trials: The APRiCoT study Type de document : Texte imprimé et/ou numérique Auteurs : Lucy BEASANT, Auteur ; Alba REALPE, Auteur ; Sarah DOUGLAS, Auteur ; Lorcan KENNY, Auteur ; Dheeraj RAI, Auteur ; Nicola MILLS, Auteur Article en page(s) : p.1540-1550 Langues : Anglais (eng) Mots-clés : autistic adults co-production learning disabilities qualitative research trial methodology Index. décimale : PER Périodiques Résumé : The purpose of this study is to explore the views of autistic adults on randomised controlled trials, specifically on processes such as randomisation and blinding, to understand the barriers and facilitators for recruiting autistic people to randomised controlled trials involving medications. We conducted one-to-one interviews with 49 autistic adults. Interviews were audio-recorded and analysed thematically. The participants found randomised controlled trial processes acceptable and linked positive attitudes towards randomised controlled trial participation to autistic peoples' heightened sense of fairness and preference for evidence-driven knowledge. However, randomised controlled trial designs may be incompatible with a (1) preference for a controlled predictable world, (2) perceived vulnerability at physical and mental health levels and (3) history of misunderstanding and exclusion, crucially from healthcare professionals. Suggestions that emerged from our findings include efforts to co-produce research to nurture trust and adapting communication practices to improve access to trials. Autistic people are a highly motivated group to work with research teams to mitigate barriers to randomised controlled trial participation. We explored what psychosocial determinants play a role in the acceptability of randomised controlled trials to test interventions to improve quality of life and mental health in autistic adults. The study provides useful information that may help the design and conduct of more accessible trials with and for the autistic community. Lay abstract Large randomised controlled trials are used to test healthcare treatments. Yet there are no large randomised controlled trials on effective treatments for common mental health issues affecting autistic adults. The purpose of this study was to learn what autistic adults think about randomised controlled trials in preparation for a randomised controlled trial testing a medication for anxiety. This means we wanted to know their opinions about the way randomised controlled trials are done, such as how people are chosen to be in the study and how the study is carried out. We did this by talking to 49 autistic adults individually and asking them questions. We found that most of the people we talked to were okay with the way randomised controlled trials are done. They thought it was fair and they liked that it was based on evidence. However, some autistic people might find it hard to take part in randomised controlled trials. Some people did not like the uncertainty of not knowing what treatment they would receive in a randomised controlled trial. Others felt too vulnerable and may have had bad experiences with healthcare in the past. We found that it is important to involve autistic people early on and at every stage when designing a clinical trial. Care about how clear and precise the study communication is will build trust and improve access to research. Our study indicates that it is possible to conduct large randomised controlled trials with and for autistic people. This can ultimately contribute to the improvement of healthcare outcomes for this population. En ligne : https://dx.doi.org/10.1177/13623613231202432 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529
in Autism > 28-6 (June 2024) . - p.1540-1550[article] Autistic adults' views on the design and processes within randomised controlled trials: The APRiCoT study [Texte imprimé et/ou numérique] / Lucy BEASANT, Auteur ; Alba REALPE, Auteur ; Sarah DOUGLAS, Auteur ; Lorcan KENNY, Auteur ; Dheeraj RAI, Auteur ; Nicola MILLS, Auteur . - p.1540-1550.
Langues : Anglais (eng)
in Autism > 28-6 (June 2024) . - p.1540-1550
Mots-clés : autistic adults co-production learning disabilities qualitative research trial methodology Index. décimale : PER Périodiques Résumé : The purpose of this study is to explore the views of autistic adults on randomised controlled trials, specifically on processes such as randomisation and blinding, to understand the barriers and facilitators for recruiting autistic people to randomised controlled trials involving medications. We conducted one-to-one interviews with 49 autistic adults. Interviews were audio-recorded and analysed thematically. The participants found randomised controlled trial processes acceptable and linked positive attitudes towards randomised controlled trial participation to autistic peoples' heightened sense of fairness and preference for evidence-driven knowledge. However, randomised controlled trial designs may be incompatible with a (1) preference for a controlled predictable world, (2) perceived vulnerability at physical and mental health levels and (3) history of misunderstanding and exclusion, crucially from healthcare professionals. Suggestions that emerged from our findings include efforts to co-produce research to nurture trust and adapting communication practices to improve access to trials. Autistic people are a highly motivated group to work with research teams to mitigate barriers to randomised controlled trial participation. We explored what psychosocial determinants play a role in the acceptability of randomised controlled trials to test interventions to improve quality of life and mental health in autistic adults. The study provides useful information that may help the design and conduct of more accessible trials with and for the autistic community. Lay abstract Large randomised controlled trials are used to test healthcare treatments. Yet there are no large randomised controlled trials on effective treatments for common mental health issues affecting autistic adults. The purpose of this study was to learn what autistic adults think about randomised controlled trials in preparation for a randomised controlled trial testing a medication for anxiety. This means we wanted to know their opinions about the way randomised controlled trials are done, such as how people are chosen to be in the study and how the study is carried out. We did this by talking to 49 autistic adults individually and asking them questions. We found that most of the people we talked to were okay with the way randomised controlled trials are done. They thought it was fair and they liked that it was based on evidence. However, some autistic people might find it hard to take part in randomised controlled trials. Some people did not like the uncertainty of not knowing what treatment they would receive in a randomised controlled trial. Others felt too vulnerable and may have had bad experiences with healthcare in the past. We found that it is important to involve autistic people early on and at every stage when designing a clinical trial. Care about how clear and precise the study communication is will build trust and improve access to research. Our study indicates that it is possible to conduct large randomised controlled trials with and for autistic people. This can ultimately contribute to the improvement of healthcare outcomes for this population. En ligne : https://dx.doi.org/10.1177/13623613231202432 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 Autistic preschoolers display reduced attention orientation for competition but intact facilitation from a parallel competitor: Eye-tracking and behavioral data / Luodi YU in Autism, 28-6 (June 2024)
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Titre : Autistic preschoolers display reduced attention orientation for competition but intact facilitation from a parallel competitor: Eye-tracking and behavioral data Type de document : Texte imprimé et/ou numérique Auteurs : Luodi YU, Auteur ; Zhiren WANG, Auteur ; Yuebo FAN, Auteur ; Lizhi BAN, Auteur ; Laurent MOTTRON, Auteur Article en page(s) : p.1551-1564 Langues : Anglais (eng) Mots-clés : autism lateral tutorship parallel competition social attention social facilitation Index. décimale : PER Périodiques Résumé : While overt social atypicalities remain a key component of the autistic phenotype, recent reframing of autistic social motivation suggests that these atypicalities do not overlap with their actual level of social engagement. Our study aimed to investigate autistic preschoolers' visual attention toward social situations with unequal interactive load and determine the potential benefits of parallel competition, a form of lateral tutorship. The study observed 26 autistic preschoolers and 20 typically developing children. First, a gaze-contingent procedure measured visual attention toward videos of parallel competitive play, overtly cooperative play, and a non-social object. Then, a motor task and a cognitive task were conducted, both independently and with a parallel competitor to assess the effect of parallel engagement on children?s performance. Eye-tracking demonstrated autistic children displayed reduced attention toward competition than typically developing children. However, behavioral data revealed the presence of a parallel competitor significantly and similarly improved performance for autistics and typically developing children. These findings suggest a dissociation between social attention and social facilitation in young autistic children, indicating that atypical visual patterns toward social situations do not necessarily preclude them from benefiting from these situations. As such, activities parallel to the child activities, or lateral tutorship, may represent an addition to traditional joint-interactive activities in early education for autistic children. Lay Abstract Recent research suggests that we might have underestimated the social motivation of autistic individuals. Autistic children might be engaged in a social situation, even if they seem not to be attending to people in a typical way. Our study investigated how young autistic children behave in a "parallel" situation, which we call "parallel competition," where people participate in friendly contests side-by-side but without direct interaction. First, we used eye-tracking technology to observe how much autistic children pay attention to two video scenarios: one depicting parallel competition, and the other where individuals play directly with each other. The results showed that autistic children looked less toward the parallel competition video than their typically developing peers. However, when autistic children took part in parallel competitions themselves, playing physical and cognitive games against a teacher, their performance improved relative to playing individually just as much as their typically developing peers. This suggests that even though autistic children pay attention to social events differently, they can still benefit from the presence of others. These findings suggest complementing traditional cooperative activities by incorporating parallel activities into educational programs for young autistic children. By doing so, we can create more inclusive learning environments for these children. En ligne : https://dx.doi.org/10.1177/13623613241239416 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529
in Autism > 28-6 (June 2024) . - p.1551-1564[article] Autistic preschoolers display reduced attention orientation for competition but intact facilitation from a parallel competitor: Eye-tracking and behavioral data [Texte imprimé et/ou numérique] / Luodi YU, Auteur ; Zhiren WANG, Auteur ; Yuebo FAN, Auteur ; Lizhi BAN, Auteur ; Laurent MOTTRON, Auteur . - p.1551-1564.
Langues : Anglais (eng)
in Autism > 28-6 (June 2024) . - p.1551-1564
Mots-clés : autism lateral tutorship parallel competition social attention social facilitation Index. décimale : PER Périodiques Résumé : While overt social atypicalities remain a key component of the autistic phenotype, recent reframing of autistic social motivation suggests that these atypicalities do not overlap with their actual level of social engagement. Our study aimed to investigate autistic preschoolers' visual attention toward social situations with unequal interactive load and determine the potential benefits of parallel competition, a form of lateral tutorship. The study observed 26 autistic preschoolers and 20 typically developing children. First, a gaze-contingent procedure measured visual attention toward videos of parallel competitive play, overtly cooperative play, and a non-social object. Then, a motor task and a cognitive task were conducted, both independently and with a parallel competitor to assess the effect of parallel engagement on children?s performance. Eye-tracking demonstrated autistic children displayed reduced attention toward competition than typically developing children. However, behavioral data revealed the presence of a parallel competitor significantly and similarly improved performance for autistics and typically developing children. These findings suggest a dissociation between social attention and social facilitation in young autistic children, indicating that atypical visual patterns toward social situations do not necessarily preclude them from benefiting from these situations. As such, activities parallel to the child activities, or lateral tutorship, may represent an addition to traditional joint-interactive activities in early education for autistic children. Lay Abstract Recent research suggests that we might have underestimated the social motivation of autistic individuals. Autistic children might be engaged in a social situation, even if they seem not to be attending to people in a typical way. Our study investigated how young autistic children behave in a "parallel" situation, which we call "parallel competition," where people participate in friendly contests side-by-side but without direct interaction. First, we used eye-tracking technology to observe how much autistic children pay attention to two video scenarios: one depicting parallel competition, and the other where individuals play directly with each other. The results showed that autistic children looked less toward the parallel competition video than their typically developing peers. However, when autistic children took part in parallel competitions themselves, playing physical and cognitive games against a teacher, their performance improved relative to playing individually just as much as their typically developing peers. This suggests that even though autistic children pay attention to social events differently, they can still benefit from the presence of others. These findings suggest complementing traditional cooperative activities by incorporating parallel activities into educational programs for young autistic children. By doing so, we can create more inclusive learning environments for these children. En ligne : https://dx.doi.org/10.1177/13623613241239416 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 Autistic young people adaptively use gaze to facilitate joint attention during multi-gestural dyadic interactions / Nathan CARUANA in Autism, 28-6 (June 2024)
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Titre : Autistic young people adaptively use gaze to facilitate joint attention during multi-gestural dyadic interactions Type de document : Texte imprimé et/ou numérique Auteurs : Nathan CARUANA, Auteur ; Patrick NALEPKA, Auteur ; Glicyr A. PEREZ, Auteur ; Christine INKLEY, Auteur ; Courtney MUNRO, Auteur ; Hannah RAPAPORT, Auteur ; Simon BRETT, Auteur ; David M. KAPLAN, Auteur ; Michael J. RICHARDSON, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.1565-1581 Langues : Anglais (eng) Mots-clés : eye contact gaze non-verbal communication social interaction virtual reality Index. décimale : PER Périodiques Résumé : Autistic people often experience difficulties navigating face-to-face social interactions. Historically, the empirical literature has characterised these difficulties as cognitive 'deficits' in social information processing. However, the empirical basis for such claims is lacking, with most studies failing to capture the complexity of social interactions, often distilling them into singular communicative modalities (e.g. gaze-based communication) that are rarely used in isolation in daily interactions. The current study examined how gaze was used in concert with communicative hand gestures during joint attention interactions. We employed an immersive virtual reality paradigm, where autistic (n = 22) and non-autistic (n = 22) young people completed a collaborative task with a non-autistic confederate. Integrated eye-, head- and hand-motion-tracking enabled dyads to communicate naturally with each other while offering objective measures of attention and behaviour. Autistic people in our sample were similarly, if not more, effective in responding to hand-cued joint attention bids compared with non-autistic people. Moreover, both autistic and non-autistic people demonstrated an ability to adaptively use gaze information to aid coordination. Our findings suggest that the intersecting fields of autism and social neuroscience research may have overstated the role of eye gaze during coordinated social interactions. Lay abstract Autistic people have been said to have 'problems' with joint attention, that is, looking where someone else is looking. Past studies of joint attention have used tasks that require autistic people to continuously look at and respond to eye-gaze cues. But joint attention can also be done using other social cues, like pointing. This study looked at whether autistic and non-autistic young people use another person?s eye gaze during joint attention in a task that did not require them to look at their partner?s face. In the task, each participant worked together with their partner to find a computer-generated object in virtual reality. Sometimes the participant had to help guide their partner to the object, and other times, they followed their partner?s lead. Participants were told to point to guide one another but were not told to use eye gaze. Both autistic and non-autistic participants often looked at their partner?s face during joint attention interactions and were faster to respond to their partner?s hand-pointing when the partner also looked at the object before pointing. This shows that autistic people can and do use information from another person?s eyes, even when they don?t have to. It is possible that, by not forcing autistic young people to look at their partner?s face and eyes, they were better able to gather information from their partner?s face when needed, without being overwhelmed. This shows how important it is to design tasks that provide autistic people with opportunities to show what they can do. En ligne : https://dx.doi.org/10.1177/13623613231211967 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529
in Autism > 28-6 (June 2024) . - p.1565-1581[article] Autistic young people adaptively use gaze to facilitate joint attention during multi-gestural dyadic interactions [Texte imprimé et/ou numérique] / Nathan CARUANA, Auteur ; Patrick NALEPKA, Auteur ; Glicyr A. PEREZ, Auteur ; Christine INKLEY, Auteur ; Courtney MUNRO, Auteur ; Hannah RAPAPORT, Auteur ; Simon BRETT, Auteur ; David M. KAPLAN, Auteur ; Michael J. RICHARDSON, Auteur ; Elizabeth PELLICANO, Auteur . - p.1565-1581.
Langues : Anglais (eng)
in Autism > 28-6 (June 2024) . - p.1565-1581
Mots-clés : eye contact gaze non-verbal communication social interaction virtual reality Index. décimale : PER Périodiques Résumé : Autistic people often experience difficulties navigating face-to-face social interactions. Historically, the empirical literature has characterised these difficulties as cognitive 'deficits' in social information processing. However, the empirical basis for such claims is lacking, with most studies failing to capture the complexity of social interactions, often distilling them into singular communicative modalities (e.g. gaze-based communication) that are rarely used in isolation in daily interactions. The current study examined how gaze was used in concert with communicative hand gestures during joint attention interactions. We employed an immersive virtual reality paradigm, where autistic (n = 22) and non-autistic (n = 22) young people completed a collaborative task with a non-autistic confederate. Integrated eye-, head- and hand-motion-tracking enabled dyads to communicate naturally with each other while offering objective measures of attention and behaviour. Autistic people in our sample were similarly, if not more, effective in responding to hand-cued joint attention bids compared with non-autistic people. Moreover, both autistic and non-autistic people demonstrated an ability to adaptively use gaze information to aid coordination. Our findings suggest that the intersecting fields of autism and social neuroscience research may have overstated the role of eye gaze during coordinated social interactions. Lay abstract Autistic people have been said to have 'problems' with joint attention, that is, looking where someone else is looking. Past studies of joint attention have used tasks that require autistic people to continuously look at and respond to eye-gaze cues. But joint attention can also be done using other social cues, like pointing. This study looked at whether autistic and non-autistic young people use another person?s eye gaze during joint attention in a task that did not require them to look at their partner?s face. In the task, each participant worked together with their partner to find a computer-generated object in virtual reality. Sometimes the participant had to help guide their partner to the object, and other times, they followed their partner?s lead. Participants were told to point to guide one another but were not told to use eye gaze. Both autistic and non-autistic participants often looked at their partner?s face during joint attention interactions and were faster to respond to their partner?s hand-pointing when the partner also looked at the object before pointing. This shows that autistic people can and do use information from another person?s eyes, even when they don?t have to. It is possible that, by not forcing autistic young people to look at their partner?s face and eyes, they were better able to gather information from their partner?s face when needed, without being overwhelmed. This shows how important it is to design tasks that provide autistic people with opportunities to show what they can do. En ligne : https://dx.doi.org/10.1177/13623613231211967 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 Short report: Evaluation of wider community support for a neurodiversity teaching programme designed using participatory methods / Reesha ZAHIR in Autism, 28-6 (June 2024)
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Titre : Short report: Evaluation of wider community support for a neurodiversity teaching programme designed using participatory methods Type de document : Texte imprimé et/ou numérique Auteurs : Reesha ZAHIR, Auteur ; Alyssa M. ALCORN, Auteur ; Sarah MCGEOWN, Auteur ; Will MANDY, Auteur ; Dinah AITKEN, Auteur ; Fergus MURRAY, Auteur ; Sue FLETCHER-WATSON, Auteur Article en page(s) : p.1582-1590 Langues : Anglais (eng) Mots-clés : education neurodiversity participatory methods Index. décimale : PER Périodiques Résumé : Children with neurodevelopmental diagnoses often experience discrimination from their peers at school. This may result from a lack of understanding, and intolerance of differences in their thinking, communication and social interactions. Learning About Neurodiversity at School (LEANS) is a teaching programme designed to educate primary school children about the concept of neurodiversity. The LEANS programme was created by a neurodiverse team, using participatory methods. In the current study, we evaluated whether the wider neurodiverse community endorsed the planned design generated by our participatory approach. Respondents (n = 111) rated their support for key elements of the planned LEANS content, via an online survey. Participants were majority neurodivergent (70%), 98% of whom reported moderate-to-high familiarity with neurodiversity concepts. Over 90% of respondents expressed support for the planned content presented, and 73% of respondents endorsed the draft neurodiversity definition provided. A small number of respondents provided open-ended comments giving further detail on their views. Overall, the LEANS programme plan received a high level of support from this independent, neurodiversity-aware sample - demonstrating the potential of small-group participatory methods to generate wider community support. The completed resource is now available as a free online download. Lay abstract Children with diagnoses such as autism, attention-deficit/hyperactivity disorder (ADHD), dyslexia and so on often experience bullying at school. This group can be described as neurodivergent, meaning they think and process information differently from most people. Previous research suggests that increasing people?s knowledge can be an effective way to reduce stigma and bullying. Therefore, we decided to create a primary school resource to teach about neurodiversity - the concept that all humans vary in how our brains work. Working with educators, our research team - which included neurodivergent people - developed plans for a teaching programme called Learning About Neurodiversity at School (LEANS). Next, we wanted to know whether these plans, developed by our small neurodiverse team, would be endorsed by the wider community. To find out, we conducted an online feedback survey about our plans for the resource. We analysed feedback from 111 people who participated. Most of them identified as neurodivergent (70%) and reported being familiar with neurodiversity (98%), meaning they could provide an informed opinion on our plans. Over 90% of people expressed support for the planned programme content described in the survey, and 73% of them approved our intended definition of the resource?s core concept, neurodiversity. From these results, we concluded that there was a high level of support for the planned LEANS programme content across those from the wider community who completed the survey. Consequently, we continued developing the LEANS programme in line with the initial plans from our neurodiverse team. The completed resource is now available as a free download. En ligne : https://dx.doi.org/10.1177/13623613231211046 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529
in Autism > 28-6 (June 2024) . - p.1582-1590[article] Short report: Evaluation of wider community support for a neurodiversity teaching programme designed using participatory methods [Texte imprimé et/ou numérique] / Reesha ZAHIR, Auteur ; Alyssa M. ALCORN, Auteur ; Sarah MCGEOWN, Auteur ; Will MANDY, Auteur ; Dinah AITKEN, Auteur ; Fergus MURRAY, Auteur ; Sue FLETCHER-WATSON, Auteur . - p.1582-1590.
Langues : Anglais (eng)
in Autism > 28-6 (June 2024) . - p.1582-1590
Mots-clés : education neurodiversity participatory methods Index. décimale : PER Périodiques Résumé : Children with neurodevelopmental diagnoses often experience discrimination from their peers at school. This may result from a lack of understanding, and intolerance of differences in their thinking, communication and social interactions. Learning About Neurodiversity at School (LEANS) is a teaching programme designed to educate primary school children about the concept of neurodiversity. The LEANS programme was created by a neurodiverse team, using participatory methods. In the current study, we evaluated whether the wider neurodiverse community endorsed the planned design generated by our participatory approach. Respondents (n = 111) rated their support for key elements of the planned LEANS content, via an online survey. Participants were majority neurodivergent (70%), 98% of whom reported moderate-to-high familiarity with neurodiversity concepts. Over 90% of respondents expressed support for the planned content presented, and 73% of respondents endorsed the draft neurodiversity definition provided. A small number of respondents provided open-ended comments giving further detail on their views. Overall, the LEANS programme plan received a high level of support from this independent, neurodiversity-aware sample - demonstrating the potential of small-group participatory methods to generate wider community support. The completed resource is now available as a free online download. Lay abstract Children with diagnoses such as autism, attention-deficit/hyperactivity disorder (ADHD), dyslexia and so on often experience bullying at school. This group can be described as neurodivergent, meaning they think and process information differently from most people. Previous research suggests that increasing people?s knowledge can be an effective way to reduce stigma and bullying. Therefore, we decided to create a primary school resource to teach about neurodiversity - the concept that all humans vary in how our brains work. Working with educators, our research team - which included neurodivergent people - developed plans for a teaching programme called Learning About Neurodiversity at School (LEANS). Next, we wanted to know whether these plans, developed by our small neurodiverse team, would be endorsed by the wider community. To find out, we conducted an online feedback survey about our plans for the resource. We analysed feedback from 111 people who participated. Most of them identified as neurodivergent (70%) and reported being familiar with neurodiversity (98%), meaning they could provide an informed opinion on our plans. Over 90% of people expressed support for the planned programme content described in the survey, and 73% of them approved our intended definition of the resource?s core concept, neurodiversity. From these results, we concluded that there was a high level of support for the planned LEANS programme content across those from the wider community who completed the survey. Consequently, we continued developing the LEANS programme in line with the initial plans from our neurodiverse team. The completed resource is now available as a free download. En ligne : https://dx.doi.org/10.1177/13623613231211046 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 The neurodiversity concept was developed collectively: An overdue correction on the origins of neurodiversity theory / Monique BOTHA in Autism, 28-6 (June 2024)
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Titre : The neurodiversity concept was developed collectively: An overdue correction on the origins of neurodiversity theory Type de document : Texte imprimé et/ou numérique Auteurs : Monique BOTHA, Auteur ; Robert CHAPMAN, Auteur ; Morénike GIWA ONAIWU, Auteur ; Steven K. KAPP, Auteur ; Abs STANNARD ASHLEY, Auteur ; Nick WALKER, Auteur Article en page(s) : p.1591-1594 Langues : Anglais (eng) Mots-clés : autism rights autistic activism critical neurodiversity studies neurodiversity neurodiversity history neurodiversity movement Index. décimale : PER Périodiques Résumé : We, an international group of autistic scholars of autism and neurodiversity, discuss recent findings on the origins of the concept and theorising of neurodiversity. For some time, the coinage and theorising of the concept of 'neurodiversity' has been attributed to Judy Singer. Singer wrote an Honours thesis on the subject in 1998, focused on autistic activists and allies in the autistic community email list Independent Living (InLv). This was revised into a briefer book chapter, published in 1999. Despite the widespread attribution to Singer, the terms 'neurological diversity' and 'neurodiversity' were first printed in 1997 and 1998, respectively, in the work of the journalist Harvey Blume, who himself attributed them not to Singer but rather to the online community of autistic people, such as the 'Institute for the Study of the Neurologically Typical'. Recently, Martijn Dekker reported a 1996 discussion in which one InLv poster, Tony Langdon, writes of the 'neurological diversity of people. i.e. the atypical among a society provide the different perspectives needed to generate new ideas and advances, whether they be technological, cultural, artistic or otherwise'. Going forward, we should recognise the multiple, collective origins of the neurodiversity concept rather than attributing it to any single author. Lay abstract This letter discusses the origins of the concept and theory of neurodiversity. It is important to correctly attribute concept and theories to the people who developed them. For some time, the concept of neurodiversity has primarily been attributed to one person, Judy Singer. We consider the available evidence and show that the concept and theory in fact has multiple origins. We draw particular attention to recent archival findings that show the concept of 'neurological diversity' was being used years earlier than previously thought. 'Neurodiversity' means the same thing as 'neurological diversity' and does not change the theory in any way. We conclude that both the concept of neurological diversity or neurodiversity, and the body of theory surrounding it, should be understood as having been collectively developed by neurodivergent people. En ligne : https://dx.doi.org/10.1177/13623613241237871 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529
in Autism > 28-6 (June 2024) . - p.1591-1594[article] The neurodiversity concept was developed collectively: An overdue correction on the origins of neurodiversity theory [Texte imprimé et/ou numérique] / Monique BOTHA, Auteur ; Robert CHAPMAN, Auteur ; Morénike GIWA ONAIWU, Auteur ; Steven K. KAPP, Auteur ; Abs STANNARD ASHLEY, Auteur ; Nick WALKER, Auteur . - p.1591-1594.
Langues : Anglais (eng)
in Autism > 28-6 (June 2024) . - p.1591-1594
Mots-clés : autism rights autistic activism critical neurodiversity studies neurodiversity neurodiversity history neurodiversity movement Index. décimale : PER Périodiques Résumé : We, an international group of autistic scholars of autism and neurodiversity, discuss recent findings on the origins of the concept and theorising of neurodiversity. For some time, the coinage and theorising of the concept of 'neurodiversity' has been attributed to Judy Singer. Singer wrote an Honours thesis on the subject in 1998, focused on autistic activists and allies in the autistic community email list Independent Living (InLv). This was revised into a briefer book chapter, published in 1999. Despite the widespread attribution to Singer, the terms 'neurological diversity' and 'neurodiversity' were first printed in 1997 and 1998, respectively, in the work of the journalist Harvey Blume, who himself attributed them not to Singer but rather to the online community of autistic people, such as the 'Institute for the Study of the Neurologically Typical'. Recently, Martijn Dekker reported a 1996 discussion in which one InLv poster, Tony Langdon, writes of the 'neurological diversity of people. i.e. the atypical among a society provide the different perspectives needed to generate new ideas and advances, whether they be technological, cultural, artistic or otherwise'. Going forward, we should recognise the multiple, collective origins of the neurodiversity concept rather than attributing it to any single author. Lay abstract This letter discusses the origins of the concept and theory of neurodiversity. It is important to correctly attribute concept and theories to the people who developed them. For some time, the concept of neurodiversity has primarily been attributed to one person, Judy Singer. We consider the available evidence and show that the concept and theory in fact has multiple origins. We draw particular attention to recent archival findings that show the concept of 'neurological diversity' was being used years earlier than previously thought. 'Neurodiversity' means the same thing as 'neurological diversity' and does not change the theory in any way. We conclude that both the concept of neurological diversity or neurodiversity, and the body of theory surrounding it, should be understood as having been collectively developed by neurodivergent people. En ligne : https://dx.doi.org/10.1177/13623613241237871 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529