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Centre Hospitalier le Vinatier
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Auteur Rebecca POULSEN
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Documents disponibles écrits par cet auteur (7)
Faire une suggestion Affiner la rechercheAnti-ableist language is fully compatible with high-quality autism research: Response to Singer et al. (2023) / Heini M. NATRI in Autism Research, 16-4 (April 2023)
Titre : Contributing to an autism biobank: Diverse perspectives from autistic participants, family members and researchers Type de document : texte imprimé Auteurs : Hannah RAPAPORT, Auteur ; Rebecca POULSEN, Auteur ; Michael YUDELL, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.1719-1731 Langues : Anglais (eng) Mots-clés : autism biobanks bioethics biomarkers genetics Index. décimale : PER Périodiques Résumé : There has been intense debate within the autistic and autism communities about the use of autism biobanks - repositories containing biological and phenotypic materials - and of genomic autism research more broadly. Here, we sought to understand the views and experiences of those contributing to one specific biobank, the Australian Autism Biobank. We adopted a multi-informant approach, conducting semi-structured interviews with 77 people, including 18 autistic probands, 46 parents and seven siblings, all of whom donated material to the Biobank, as well as six researchers employed on the project. Specifically, we asked: what motivated participants and researchers to contribute to the Australian Autism Biobank? And how did they feel about their involvement in that process? We analysed the data using reflexive thematic analysis, adopting an inductive approach within an essentialist framework. We identified three themes, which revealed a wide diversity of viewpoints, including positive conceptualisations of autism linked to neurodiversity and more negative conceptualisations linked to hopes for the development of genetic screening and reproductive choice. These findings have implications for the meaning, value and future directions of autism science. This research has been conducted using the Australian Autism Biobank resource. Lay abstract A lot of autism research has focused on finding genes that might cause autism. To conduct these genetic studies, researchers have created 'biobanks' - collections of biological samples (such as blood, saliva, urine, stool and hair) and other health information (such as cognitive assessments and medical histories). Our study focused on the Australian Autism Biobank, which collected biological and health information from almost 1000 Australian autistic children and their families. We wanted to know what people thought about giving their information to the Biobank and why they chose to do so. We spoke to 71 people who gave to the Biobank, including 18 autistic adolescents and young adults, 46 of their parents and seven of their siblings. We also spoke to six researchers who worked on the Biobank project. We found that people were interested in giving their information to the Biobank so they could understand why some people were autistic. Some people felt knowing why could help them make choices about having children in the future. People also wanted to be involved in the Biobank because they believed it could be a resource that could help others in the future. They also trusted that scientists would keep their information safe and were keen to know how that information might be used in the future. Our findings show that people have lots of different views about autism biobanks. We suggest researchers should listen to these different views as they develop their work. En ligne : https://dx.doi.org/10.1177/13623613231203938 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531
in Autism > 28-7 (July 2024) . - p.1719-1731[article] Contributing to an autism biobank: Diverse perspectives from autistic participants, family members and researchers [texte imprimé] / Hannah RAPAPORT, Auteur ; Rebecca POULSEN, Auteur ; Michael YUDELL, Auteur ; Elizabeth PELLICANO, Auteur . - p.1719-1731.
Langues : Anglais (eng)
in Autism > 28-7 (July 2024) . - p.1719-1731
Mots-clés : autism biobanks bioethics biomarkers genetics Index. décimale : PER Périodiques Résumé : There has been intense debate within the autistic and autism communities about the use of autism biobanks - repositories containing biological and phenotypic materials - and of genomic autism research more broadly. Here, we sought to understand the views and experiences of those contributing to one specific biobank, the Australian Autism Biobank. We adopted a multi-informant approach, conducting semi-structured interviews with 77 people, including 18 autistic probands, 46 parents and seven siblings, all of whom donated material to the Biobank, as well as six researchers employed on the project. Specifically, we asked: what motivated participants and researchers to contribute to the Australian Autism Biobank? And how did they feel about their involvement in that process? We analysed the data using reflexive thematic analysis, adopting an inductive approach within an essentialist framework. We identified three themes, which revealed a wide diversity of viewpoints, including positive conceptualisations of autism linked to neurodiversity and more negative conceptualisations linked to hopes for the development of genetic screening and reproductive choice. These findings have implications for the meaning, value and future directions of autism science. This research has been conducted using the Australian Autism Biobank resource. Lay abstract A lot of autism research has focused on finding genes that might cause autism. To conduct these genetic studies, researchers have created 'biobanks' - collections of biological samples (such as blood, saliva, urine, stool and hair) and other health information (such as cognitive assessments and medical histories). Our study focused on the Australian Autism Biobank, which collected biological and health information from almost 1000 Australian autistic children and their families. We wanted to know what people thought about giving their information to the Biobank and why they chose to do so. We spoke to 71 people who gave to the Biobank, including 18 autistic adolescents and young adults, 46 of their parents and seven of their siblings. We also spoke to six researchers who worked on the Biobank project. We found that people were interested in giving their information to the Biobank so they could understand why some people were autistic. Some people felt knowing why could help them make choices about having children in the future. People also wanted to be involved in the Biobank because they believed it could be a resource that could help others in the future. They also trusted that scientists would keep their information safe and were keen to know how that information might be used in the future. Our findings show that people have lots of different views about autism biobanks. We suggest researchers should listen to these different views as they develop their work. En ligne : https://dx.doi.org/10.1177/13623613231203938 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531
Titre : Experiences of student and trainee autism researchers during the COVID-19 pandemic Type de document : texte imprimé Auteurs : Sowmyashree Mayur KAKU, Auteur ; Alana J. MCVEY, Auteur ; Alan H. GERBER, Auteur ; Charlotte M. PRETZSCH, Auteur ; Desiree R. JONES, Auteur ; Fathima KODAKKADAN, Auteur ; Jiedi LEI, Auteur ; Lauren SINGER, Auteur ; Lucy CHITEHWE, Auteur ; Rebecca POULSEN, Auteur ; Marika C. COFFMAN, Auteur Article en page(s) : p.413-420 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Abstract Circumstances surrounding the COVID-19 pandemic have resulted in significant personal and professional adjustments. Students and trainees, including those in autism research, face unique challenges to accomplishing their training and career goals during this unprecedented time. In this commentary, we, as members of the International Society for Autism Research Student and Trainee Committee, describe our personal experiences, which may or may not align with those of other students and trainees. Our experiences have varied both in terms of the ease (or lack thereof) with which we adapted and the degree to which we were supported in the transition to online research and clinical practice. We faced and continue to adjust to uncertainties about future training and academic positions, for which opportunities have been in decline and have subsequently negatively impacted our mental health. Students and trainees' prospects have been particularly impacted compared to more established researchers and faculty. In addition to the challenges we have faced, however, there have also been unexpected benefits in our training during the pandemic, which we describe here. We have learned new coping strategies which, we believe, have served us well. The overarching goal of this commentary is to describe these experiences and strategies in the hope that they will benefit the autism research community moving forward. Here, we provide a set of recommendations for faculty, especially mentors, to support students and trainees as well as strategies for students and trainees to bolster their self-advocacy, both of which we see as crucial for our future careers. Lay Summary The COVID-19 pandemic has affected students and trainees, including those in autism research, in different ways. Here, we describe our personal experiences. These experiences include challenges. For example, it has been difficult to move from in-person to online work. It has also been difficult to keep up with work and training goals. Moreover, working from home has made it hard to connect with our supervisors and mentors. As a result, many of us have felt unsure about how to make the best career choices. Working in clinical services and getting to know and support our patients online has also been challenging. Overall, the pandemic has made us feel more isolated and some of us have struggled to cope with that. On the other hand, our experiences have also included benefits. For example, by working online, we have been able to join meetings all over the world. Also, the pandemic has pushed us to learn new skills. Those include technical skills but also skills for well-being. Next, we describe our experiences of returning to work. Finally, we give recommendations for trainees and supervisors on how to support each other and to build a strong community. En ligne : https://doi.org/10.1002/aur.2662 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=473
in Autism Research > 15-3 (March 2022) . - p.413-420[article] Experiences of student and trainee autism researchers during the COVID-19 pandemic [texte imprimé] / Sowmyashree Mayur KAKU, Auteur ; Alana J. MCVEY, Auteur ; Alan H. GERBER, Auteur ; Charlotte M. PRETZSCH, Auteur ; Desiree R. JONES, Auteur ; Fathima KODAKKADAN, Auteur ; Jiedi LEI, Auteur ; Lauren SINGER, Auteur ; Lucy CHITEHWE, Auteur ; Rebecca POULSEN, Auteur ; Marika C. COFFMAN, Auteur . - p.413-420.
Langues : Anglais (eng)
in Autism Research > 15-3 (March 2022) . - p.413-420
Index. décimale : PER Périodiques Résumé : Abstract Circumstances surrounding the COVID-19 pandemic have resulted in significant personal and professional adjustments. Students and trainees, including those in autism research, face unique challenges to accomplishing their training and career goals during this unprecedented time. In this commentary, we, as members of the International Society for Autism Research Student and Trainee Committee, describe our personal experiences, which may or may not align with those of other students and trainees. Our experiences have varied both in terms of the ease (or lack thereof) with which we adapted and the degree to which we were supported in the transition to online research and clinical practice. We faced and continue to adjust to uncertainties about future training and academic positions, for which opportunities have been in decline and have subsequently negatively impacted our mental health. Students and trainees' prospects have been particularly impacted compared to more established researchers and faculty. In addition to the challenges we have faced, however, there have also been unexpected benefits in our training during the pandemic, which we describe here. We have learned new coping strategies which, we believe, have served us well. The overarching goal of this commentary is to describe these experiences and strategies in the hope that they will benefit the autism research community moving forward. Here, we provide a set of recommendations for faculty, especially mentors, to support students and trainees as well as strategies for students and trainees to bolster their self-advocacy, both of which we see as crucial for our future careers. Lay Summary The COVID-19 pandemic has affected students and trainees, including those in autism research, in different ways. Here, we describe our personal experiences. These experiences include challenges. For example, it has been difficult to move from in-person to online work. It has also been difficult to keep up with work and training goals. Moreover, working from home has made it hard to connect with our supervisors and mentors. As a result, many of us have felt unsure about how to make the best career choices. Working in clinical services and getting to know and support our patients online has also been challenging. Overall, the pandemic has made us feel more isolated and some of us have struggled to cope with that. On the other hand, our experiences have also included benefits. For example, by working online, we have been able to join meetings all over the world. Also, the pandemic has pushed us to learn new skills. Those include technical skills but also skills for well-being. Next, we describe our experiences of returning to work. Finally, we give recommendations for trainees and supervisors on how to support each other and to build a strong community. En ligne : https://doi.org/10.1002/aur.2662 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=473
Titre : How auditory processing influences the autistic profile: A review Type de document : texte imprimé Auteurs : Rebecca POULSEN, Auteur ; Z. WILLIAMS, Auteur ; Patrick DWYER, Auteur ; Elizabeth PELLICANO, Auteur ; P.F. SOWMAN, Auteur ; D. MCALPINE, Auteur Article en page(s) : p.2452-2470 Langues : Anglais (eng) Mots-clés : auditory processing autism autistic traits decreased sound tolerance Index. décimale : PER Périodiques Résumé : Abstract We need to combine sensory data from various sources to make sense of the world around us. This sensory data helps us understand our surroundings, influencing our experiences and interactions within our everyday environments. Recent interest in sensory-focused approaches to supporting autistic people has fixed on auditory processing?the sense of hearing and the act of listening?and its crucial role in language, communications, and social domains, as well as non-social autism-specific attributes, to understand better how sensory processing might differ in autistic people. In this narrative review, we synthesize published research into auditory processing in autistic people and the relationship between auditory processing and autistic attributes in a contextually novel way. The purpose is to understand the relationship between these domains more fully, drawing on evidence gleaned from experiential perspectives through to neurological investigations. We also examine the relationship between auditory processing and diagnosable auditory conditions, such as hyperacusis, misophonia, phonophobia, and intolerance to loud sounds, as well as its relation to sleep, anxiety, and sensory overload. Through reviewing experiential, behavioral and neurological literature, we demonstrate that auditory processes interact with and shape the broader autistic profile?something not previously considered. Through a better understanding of the potential impact of auditory experiences, our review aims to inform future research on investigating the relationship between auditory processing and autistic traits through quantitative measures or using qualitative experiential inquiry to examine this relationship more holistically. En ligne : https://dx.doi.org/10.1002/aur.3259 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=544
in Autism Research > 17-12 (December 2024) . - p.2452-2470[article] How auditory processing influences the autistic profile: A review [texte imprimé] / Rebecca POULSEN, Auteur ; Z. WILLIAMS, Auteur ; Patrick DWYER, Auteur ; Elizabeth PELLICANO, Auteur ; P.F. SOWMAN, Auteur ; D. MCALPINE, Auteur . - p.2452-2470.
Langues : Anglais (eng)
in Autism Research > 17-12 (December 2024) . - p.2452-2470
Mots-clés : auditory processing autism autistic traits decreased sound tolerance Index. décimale : PER Périodiques Résumé : Abstract We need to combine sensory data from various sources to make sense of the world around us. This sensory data helps us understand our surroundings, influencing our experiences and interactions within our everyday environments. Recent interest in sensory-focused approaches to supporting autistic people has fixed on auditory processing?the sense of hearing and the act of listening?and its crucial role in language, communications, and social domains, as well as non-social autism-specific attributes, to understand better how sensory processing might differ in autistic people. In this narrative review, we synthesize published research into auditory processing in autistic people and the relationship between auditory processing and autistic attributes in a contextually novel way. The purpose is to understand the relationship between these domains more fully, drawing on evidence gleaned from experiential perspectives through to neurological investigations. We also examine the relationship between auditory processing and diagnosable auditory conditions, such as hyperacusis, misophonia, phonophobia, and intolerance to loud sounds, as well as its relation to sleep, anxiety, and sensory overload. Through reviewing experiential, behavioral and neurological literature, we demonstrate that auditory processes interact with and shape the broader autistic profile?something not previously considered. Through a better understanding of the potential impact of auditory experiences, our review aims to inform future research on investigating the relationship between auditory processing and autistic traits through quantitative measures or using qualitative experiential inquiry to examine this relationship more holistically. En ligne : https://dx.doi.org/10.1002/aur.3259 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=544
Titre : Meaningful research for autistic people? Ask autistics! Type de document : texte imprimé Auteurs : Rebecca POULSEN, Auteur ; Charlotte BROWNLOW, Auteur ; Wenn LAWSON, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.3-5 Langues : Anglais (eng) Index. décimale : PER Périodiques En ligne : http://dx.doi.org/10.1177/13623613211064421 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=451
in Autism > 26-1 (January 2022) . - p.3-5[article] Meaningful research for autistic people? Ask autistics! [texte imprimé] / Rebecca POULSEN, Auteur ; Charlotte BROWNLOW, Auteur ; Wenn LAWSON, Auteur ; Elizabeth PELLICANO, Auteur . - p.3-5.
Langues : Anglais (eng)
in Autism > 26-1 (January 2022) . - p.3-5
Index. décimale : PER Périodiques En ligne : http://dx.doi.org/10.1177/13623613211064421 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=451
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