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 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] / 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 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] / 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

Life as a deck of cards: A perspective on autistic females’ experiences / Robyn STEWARD in Autism, 21-6 (August 2017)  

Public ISBD [article]  inAutism > 21-6 (August 2017) . - p.659-660 Titre : Life as a deck of cards: A perspective on autistic females’ experiences Type de document : texte imprimé Auteurs : Robyn STEWARD, Auteur Article en page(s) : p.659-660 Langues : Anglais (eng) Index. décimale : PER Périodiques En ligne : http://dx.doi.org/10.1177/1362361317704976 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=311 [article] Life as a deck of cards: A perspective on autistic females’ experiences [texte imprimé] / Robyn STEWARD, Auteur . - p.659-660. Langues : Anglais (eng) in Autism > 21-6 (August 2017) . - p.659-660 Index. décimale : PER Périodiques En ligne : http://dx.doi.org/10.1177/1362361317704976 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=311

"Life is Much More Difficult to Manage During Periods": Autistic Experiences of Menstruation / Robyn STEWARD in Journal of Autism and Developmental Disorders, 48-12 (December 2018)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 48-12 (December 2018) . - p.4287-4292 Titre : "Life is Much More Difficult to Manage During Periods": Autistic Experiences of Menstruation Type de document : texte imprimé Auteurs : Robyn STEWARD, Auteur ; Laura CRANE, Auteur ; Eilish MAIRI ROY, Auteur ; Anna REMINGTON, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.4287-4292 Langues : Anglais (eng) Mots-clés : Autism  Menarche  Menstruation  Self-regulation  Sensory sensitivities  Women's health Index. décimale : PER Périodiques Résumé : Although menarche and menstruation are perceived to be overwhelmingly negative events for developmentally-disabled women, women's health issues remain under-researched in autism. Here, we conducted a preliminary investigation of the experiences of post-menarcheal autistic (n = 123) and non-autistic (n = 114) respondents to a brief online survey. Although autistic respondents reported many overlapping issues and experiences with non-autistic respondents, they also highlighted distinct-and sometimes-distressing-issues relating to menstruation, especially a cyclical amplification of autistic-related challenges, including sensory differences and difficulties with regulating emotion and behavior, which had a significant, negative impact on their lives. These initial findings call for systematic research on the potential causes, correlates and consequences of menstrual-related problems in autistic individuals-across the spectrum and the lifespan. En ligne : http://dx.doi.org/10.1007/s10803-018-3664-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=371 [article] "Life is Much More Difficult to Manage During Periods": Autistic Experiences of Menstruation [texte imprimé] / Robyn STEWARD, Auteur ; Laura CRANE, Auteur ; Eilish MAIRI ROY, Auteur ; Anna REMINGTON, Auteur ; Elizabeth PELLICANO, Auteur . - p.4287-4292. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 48-12 (December 2018) . - p.4287-4292 Mots-clés : Autism  Menarche  Menstruation  Self-regulation  Sensory sensitivities  Women's health Index. décimale : PER Périodiques Résumé : Although menarche and menstruation are perceived to be overwhelmingly negative events for developmentally-disabled women, women's health issues remain under-researched in autism. Here, we conducted a preliminary investigation of the experiences of post-menarcheal autistic (n = 123) and non-autistic (n = 114) respondents to a brief online survey. Although autistic respondents reported many overlapping issues and experiences with non-autistic respondents, they also highlighted distinct-and sometimes-distressing-issues relating to menstruation, especially a cyclical amplification of autistic-related challenges, including sensory differences and difficulties with regulating emotion and behavior, which had a significant, negative impact on their lives. These initial findings call for systematic research on the potential causes, correlates and consequences of menstrual-related problems in autistic individuals-across the spectrum and the lifespan. En ligne : http://dx.doi.org/10.1007/s10803-018-3664-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=371

'People should be allowed to do what they like': Autistic adults' views and experiences of stimming / Steven K. KAPP in Autism, 23-7 (October 2019)  

Public ISBD [article]  inAutism > 23-7 (October 2019) . - p.1782-1792 Titre : 'People should be allowed to do what they like': Autistic adults' views and experiences of stimming Type de document : texte imprimé Auteurs : Steven K. KAPP, Auteur ; Robyn STEWARD, Auteur ; Laura CRANE, Auteur ; Daisy ELLIOTT, Auteur ; Chris ELPHICK, Auteur ; Elizabeth PELLICANO, Auteur ; Ginny RUSSELL, Auteur Article en page(s) : p.1782-1792 Langues : Anglais (eng) Mots-clés : adults  autism  neurodiversity  repetitive behaviour  repetitive movements  self-stimulatory behaviour  stereotypies  stimming Index. décimale : PER Périodiques Résumé : 'Stereotyped or repetitive motor movements' are characterised as core features in the diagnosis of autism, yet many autistic adults (and the neurodiversity movement) have reclaimed them as 'stimming'. Supported by a growing body of scientific research, autistic adults argue that these behaviours may serve as useful coping mechanisms, yet little research has examined stimming from the perspective of autistic adults. Through interviews and focus groups, we asked 32 autistic adults to share their perceptions and experiences of stimming, including the reasons they stim, any value doing so may hold for them and their perceptions of others' reactions to stimming. Using thematic analysis, we identified two themes: stimming as (1) a self-regulatory mechanism and (2) lacking in social acceptance, but can become accepted through understanding. Autistic adults highlighted the importance of stimming as an adaptive mechanism that helps them to soothe or communicate intense emotions or thoughts and thus objected to treatment that aims to eliminate the behaviour. En ligne : http://dx.doi.org/10.1177/1362361319829628 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=406 [article] 'People should be allowed to do what they like': Autistic adults' views and experiences of stimming [texte imprimé] / Steven K. KAPP, Auteur ; Robyn STEWARD, Auteur ; Laura CRANE, Auteur ; Daisy ELLIOTT, Auteur ; Chris ELPHICK, Auteur ; Elizabeth PELLICANO, Auteur ; Ginny RUSSELL, Auteur . - p.1782-1792. Langues : Anglais (eng) in Autism > 23-7 (October 2019) . - p.1782-1792 Mots-clés : adults  autism  neurodiversity  repetitive behaviour  repetitive movements  self-stimulatory behaviour  stereotypies  stimming Index. décimale : PER Périodiques Résumé : 'Stereotyped or repetitive motor movements' are characterised as core features in the diagnosis of autism, yet many autistic adults (and the neurodiversity movement) have reclaimed them as 'stimming'. Supported by a growing body of scientific research, autistic adults argue that these behaviours may serve as useful coping mechanisms, yet little research has examined stimming from the perspective of autistic adults. Through interviews and focus groups, we asked 32 autistic adults to share their perceptions and experiences of stimming, including the reasons they stim, any value doing so may hold for them and their perceptions of others' reactions to stimming. Using thematic analysis, we identified two themes: stimming as (1) a self-regulatory mechanism and (2) lacking in social acceptance, but can become accepted through understanding. Autistic adults highlighted the importance of stimming as an adaptive mechanism that helps them to soothe or communicate intense emotions or thoughts and thus objected to treatment that aims to eliminate the behaviour. En ligne : http://dx.doi.org/10.1177/1362361319829628 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=406

The autism-friendly guide to periods / Robyn STEWARD in Good Autism Practice - GAP, 23-1 (Spring 2022)

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The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype / Sarah BARGIELA in Journal of Autism and Developmental Disorders, 46-10 (October 2016)  

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