Bridging autism, science and society: moving toward an ethically informed approach to autism research / Elizabeth PELLICANO in Autism Research, 4-4 (August 2011)  

Public ISBD [article]  inAutism Research > 4-4 (August 2011) . - p.271-282 Titre : Bridging autism, science and society: moving toward an ethically informed approach to autism research Type de document : Texte imprimé et/ou numérique Auteurs : Elizabeth PELLICANO, Auteur ; Marc STEARS, Auteur Année de publication : 2011 Article en page(s) : p.271-282 Langues : Anglais (eng) Mots-clés : autism  ethics  genetics  neuroscience  neurodiversity  activism Index. décimale : PER Périodiques Résumé : Recent developments in the science of autism have provoked widespread unease among autism activists. Drawing on the findings of a major international gathering of researchers, ethicists, and activists, this paper presents the first major analysis of the ethical questions arising from this unease. We outline the scientific developments that have provoked the most discomfort, analyze the response to these developments from within and without the autism community, and trace the current state of the ethical debate. Having done so, we contend that these ethical questions are unlikely to be resolved as they depend on fundamentally conflicting assumptions about the nature and desirability of neurocognitive difference. We conclude by arguing for a new range of democratic mechanisms that could enable the scientific community, autistics, and other concerned parties to respond collectively to such entrenched ethical disputes. En ligne : http://dx.doi.org/10.1002/aur.201 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=141 [article] Bridging autism, science and society: moving toward an ethically informed approach to autism research [Texte imprimé et/ou numérique] / Elizabeth PELLICANO, Auteur ; Marc STEARS, Auteur . - 2011 . - p.271-282. Langues : Anglais (eng) in Autism Research > 4-4 (August 2011) . - p.271-282 Mots-clés : autism  ethics  genetics  neuroscience  neurodiversity  activism Index. décimale : PER Périodiques Résumé : Recent developments in the science of autism have provoked widespread unease among autism activists. Drawing on the findings of a major international gathering of researchers, ethicists, and activists, this paper presents the first major analysis of the ethical questions arising from this unease. We outline the scientific developments that have provoked the most discomfort, analyze the response to these developments from within and without the autism community, and trace the current state of the ethical debate. Having done so, we contend that these ethical questions are unlikely to be resolved as they depend on fundamentally conflicting assumptions about the nature and desirability of neurocognitive difference. We conclude by arguing for a new range of democratic mechanisms that could enable the scientific community, autistics, and other concerned parties to respond collectively to such entrenched ethical disputes. En ligne : http://dx.doi.org/10.1002/aur.201 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=141

COVID-19, social isolation and the mental health of autistic people and their families: A qualitative study / Elizabeth PELLICANO in Autism, 26-4 (May 2022)  

Public ISBD [article]  inAutism > 26-4 (May 2022) . - p.914-927 Titre : COVID-19, social isolation and the mental health of autistic people and their families: A qualitative study Type de document : Texte imprimé et/ou numérique Auteurs : Elizabeth PELLICANO, Auteur ; Simon BRETT, Auteur ; Jacquiline DEN HOUTING, Auteur ; Melanie HEYWORTH, Auteur ; Iliana MAGIATI, Auteur ; Robyn STEWARD, Auteur ; Anna URBANOWICZ, Auteur ; Marc STEARS, Auteur Article en page(s) : p.914-927 Langues : Anglais (eng) Mots-clés : Adolescent  Adult  Autism Spectrum Disorder  Autistic Disorder  Covid-19  Child  Communicable Disease Control  Humans  Mental Health  Pandemics  Social Isolation  participatory research  qualitative research Index. décimale : PER Périodiques Résumé : In this study, we show that autistic people and their families have found it very difficult to deal with the lockdowns during the COVID-19 pandemic. Autistic and non-autistic researchers spoke to 144 people, including 44 autistic adults, 84 parents of autistic children and 16 autistic young people (12-18?years old). We asked them about their everyday lives and mental health during lockdown. People told us that they enjoyed having fewer obligations and demands compared to pre-COVID-19 life. They felt that life was quieter and calmer. But people also told us again and again how much they missed meeting people in real life, especially their friends, and their therapists and support workers. People told us that their mental health suffered because they did not have contact with their friends and services. Importantly, many people (including researchers) think that autistic people do not want friends or to be around people. But our results show that is not true. Many autistic people do want friends and to be around other people. Some people's mental health has been damaged by not being able to see people during COVID-19. Autistic people need support in many areas of life so they can keep socialising and seeing their friends even through difficult times, like pandemics. En ligne : https://dx.doi.org/10.1177/13623613211035936 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=473 [article] COVID-19, social isolation and the mental health of autistic people and their families: A qualitative study [Texte imprimé et/ou numérique] / Elizabeth PELLICANO, Auteur ; Simon BRETT, Auteur ; Jacquiline DEN HOUTING, Auteur ; Melanie HEYWORTH, Auteur ; Iliana MAGIATI, Auteur ; Robyn STEWARD, Auteur ; Anna URBANOWICZ, Auteur ; Marc STEARS, Auteur . - p.914-927. Langues : Anglais (eng) in Autism > 26-4 (May 2022) . - p.914-927 Mots-clés : Adolescent  Adult  Autism Spectrum Disorder  Autistic Disorder  Covid-19  Child  Communicable Disease Control  Humans  Mental Health  Pandemics  Social Isolation  participatory research  qualitative research Index. décimale : PER Périodiques Résumé : In this study, we show that autistic people and their families have found it very difficult to deal with the lockdowns during the COVID-19 pandemic. Autistic and non-autistic researchers spoke to 144 people, including 44 autistic adults, 84 parents of autistic children and 16 autistic young people (12-18?years old). We asked them about their everyday lives and mental health during lockdown. People told us that they enjoyed having fewer obligations and demands compared to pre-COVID-19 life. They felt that life was quieter and calmer. But people also told us again and again how much they missed meeting people in real life, especially their friends, and their therapists and support workers. People told us that their mental health suffered because they did not have contact with their friends and services. Importantly, many people (including researchers) think that autistic people do not want friends or to be around people. But our results show that is not true. Many autistic people do want friends and to be around other people. Some people's mental health has been damaged by not being able to see people during COVID-19. Autistic people need support in many areas of life so they can keep socialising and seeing their friends even through difficult times, like pandemics. En ligne : https://dx.doi.org/10.1177/13623613211035936 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=473

“It just fits my needs better”: Autistic students and parents’ experiences of learning from home during the early phase of the COVID-19 pandemic / Melanie HEYWORTH in Autism & Developmental Language Impairments, 6 (January-December 2021)  

Public ISBD [article]  inAutism & Developmental Language Impairments > 6 (January-December 2021) . - 23969415211057681 Titre : “It just fits my needs better”: Autistic students and parents’ experiences of learning from home during the early phase of the COVID-19 pandemic Type de document : Texte imprimé et/ou numérique Auteurs : Melanie HEYWORTH, Auteur ; Simon BRETT, Auteur ; Jacquiline DEN HOUTING, Auteur ; Iliana MAGIATI, Auteur ; Robyn STEWARD, Auteur ; Anna URBANOWICZ, Auteur ; Marc STEARS, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : 23969415211057681 Langues : Anglais (eng) Mots-clés : education  schools  student-teacher relationship  inclusion Index. décimale : PER Périodiques Résumé : Background and aimsThe COVID-19 pandemic has caused unprecedented disruption to people's lives, especially for families, whose children have been taken out of schools during lockdown restrictions and required to learn from home. Little is known, however, about the perceived impact of the lockdown restrictions on the educational experiences of autistic children and young people – a group whose conventional schooling experiences are already often challenging. In this study, we sought to (1) understand these experiences from the perspectives of autistic young people and their parents, and (2) identify the underlying sources of positive experiences at this challenging time, in order to inform the ways in which autistic children might flourish at school in more normal times.MethodsNinety-one Australian participants, including 16 autistic young people aged 12–18 years, 32 autistic parents and 43 non-autistic parents of autistic young people aged 3–18 years, took part in semi-structured interviews about their experiences of life during the initial phase of the COVID-19 pandemic. The interviews were subjected to reflexive, thematic analysis to identify themes and subthemes for each research question.ResultsOverall, our participants initially found the transition to learning from home extremely challenging, with parents reporting that the support received from schools was far from adequate. After that initial period of transition, however, many autistic children reported flourishing at home both educationally and personally. For these children and families, we identified three key ingredients essential to this flourishing, including: (i) the importance of connected, trusting relationships (‘people’); (ii) the sensory and social safety of home (‘place’); and (iii) the flexibility to pace and structure learning to suit the individual child (‘time’).ConclusionsWhile the initial COVID-19 lockdown presented many challenges to children learning at home, there were aspects of this otherwise-unsettling situation that enabled children to thrive and from which we can learn for the future.ImplicationsThese findings have important implications for understanding how and when autistic children might thrive in institutional educational settings once the pandemic subsides, focusing on the relationships between teachers and students, the nature of the physical learning environment and the need for greater flexibility in planning the school day. En ligne : http://dx.doi.org/10.1177/23969415211057681 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=459 [article] “It just fits my needs better”: Autistic students and parents’ experiences of learning from home during the early phase of the COVID-19 pandemic [Texte imprimé et/ou numérique] / Melanie HEYWORTH, Auteur ; Simon BRETT, Auteur ; Jacquiline DEN HOUTING, Auteur ; Iliana MAGIATI, Auteur ; Robyn STEWARD, Auteur ; Anna URBANOWICZ, Auteur ; Marc STEARS, Auteur ; Elizabeth PELLICANO, Auteur . - 23969415211057681. Langues : Anglais (eng) in Autism & Developmental Language Impairments > 6 (January-December 2021) . - 23969415211057681 Mots-clés : education  schools  student-teacher relationship  inclusion Index. décimale : PER Périodiques Résumé : Background and aimsThe COVID-19 pandemic has caused unprecedented disruption to people's lives, especially for families, whose children have been taken out of schools during lockdown restrictions and required to learn from home. Little is known, however, about the perceived impact of the lockdown restrictions on the educational experiences of autistic children and young people – a group whose conventional schooling experiences are already often challenging. In this study, we sought to (1) understand these experiences from the perspectives of autistic young people and their parents, and (2) identify the underlying sources of positive experiences at this challenging time, in order to inform the ways in which autistic children might flourish at school in more normal times.MethodsNinety-one Australian participants, including 16 autistic young people aged 12–18 years, 32 autistic parents and 43 non-autistic parents of autistic young people aged 3–18 years, took part in semi-structured interviews about their experiences of life during the initial phase of the COVID-19 pandemic. The interviews were subjected to reflexive, thematic analysis to identify themes and subthemes for each research question.ResultsOverall, our participants initially found the transition to learning from home extremely challenging, with parents reporting that the support received from schools was far from adequate. After that initial period of transition, however, many autistic children reported flourishing at home both educationally and personally. For these children and families, we identified three key ingredients essential to this flourishing, including: (i) the importance of connected, trusting relationships (‘people’); (ii) the sensory and social safety of home (‘place’); and (iii) the flexibility to pace and structure learning to suit the individual child (‘time’).ConclusionsWhile the initial COVID-19 lockdown presented many challenges to children learning at home, there were aspects of this otherwise-unsettling situation that enabled children to thrive and from which we can learn for the future.ImplicationsThese findings have important implications for understanding how and when autistic children might thrive in institutional educational settings once the pandemic subsides, focusing on the relationships between teachers and students, the nature of the physical learning environment and the need for greater flexibility in planning the school day. En ligne : http://dx.doi.org/10.1177/23969415211057681 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=459

The hidden inequalities of COVID-19 / Elizabeth PELLICANO in Autism, 24-6 (August 2020)  

Public ISBD [article]  inAutism > 24-6 (August 2020) . - p.1309-1310 Titre : The hidden inequalities of COVID-19 Type de document : Texte imprimé et/ou numérique Auteurs : Elizabeth PELLICANO, Auteur ; Marc STEARS, Auteur Article en page(s) : p.1309-1310 Langues : Anglais (eng) Index. décimale : PER Périodiques En ligne : http://dx.doi.org/10.1177/1362361320927590 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=428 [article] The hidden inequalities of COVID-19 [Texte imprimé et/ou numérique] / Elizabeth PELLICANO, Auteur ; Marc STEARS, Auteur . - p.1309-1310. Langues : Anglais (eng) in Autism > 24-6 (August 2020) . - p.1309-1310 Index. décimale : PER Périodiques En ligne : http://dx.doi.org/10.1177/1362361320927590 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=428

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